CPPIH Incompetence Dossier


This is a dossier of correspondence, set out in numbered clauses, linking to and evidencing just one person’s experience of the Commission for Patient and Public Involvement in Health’s (CPPIH) incompetence and equivocality since the inauguration of PPI Forums in December 2003. How much this one person’s experience has been repeated for others is not known. BUT, there is evidence here it has been widespread.

Some of the correspondence is incidental and not indexed. As the dossier is chronological, some of the correspondence overlaps its indexed position in places. Please bear with it.

Some of the correspondence does not constitute direct evidence and is opinion. However, that opinion in itself is evidence of widespread disquiet about CPPIH maladministration. Much of the correspondence is direct evidence of CPPIH incompetence, equivocation and failure to abide by Standards in Public Life..


1 to 32: early simple omissions, misinformings, withholding of information FSO attempts to usurp PPI Forum independence and official lies

12 to 32: how I, as a forum member was ignored and undermined by the FSO

33: the first instance of evidence of incompetence from another area

35: how my disability was discriminated against by CPPIH.

40: how CPPIH could get away with disability discrimination then.

41: my 1st communication with other agencies with concerns around CPPIH maladministration.

43: my first response to CPPIH’s excuses around their discrimination

44 to 81: first articles and their progress

46: first contact with my constituency MP about the absence of CPPIH CRB checks

58: CPPIH failure to pay expenses

56, 61, 63, 69: more evidence from elsewhere

70 to 76: Correspondence with CPPIH Policy Executive with admission that forums were not yet functioning as the public had been told by Sharon Grant and others

66: CPPIH failure to provide information

72: incorrect information

82, 83: more incorrect information

84: my disabilty discrimination response to CPPIH CEO

83, 85, 92, 93, 108: FSO (Shaw Trust) incompetence

91, 94: more failure to supply information

95: first information on resignations from PPI forums

96: first Parliamentary Ombudsman inquiries

97: CPPIH failure to reply or acknowledge

98, 99: obtaining forum information from a hospital trust that CPPIH or the FSO had failed to provide

90: CPPIH abuse of another forum member

103: advice from the Committee on Standards in Public Life

106: more evidence from elsewhere (Action on Pain)

111: advice about accountability protocols from the Parliamentary Ombudsman

115: letter to MP re CPPIH incompetence

119: my letter to Harry Cayton

120: letter from Cliff Prior, Rethink confirming anomalies

127 to 129: more CPPIH evasion

131: MP example of DH/CPPIH evasion tactics which run contrary to Ombudsmans advice (not recognising ‘parent body’ protocol)

132: response to my MP’s letter to Rosie Winterton by the then CPPIH CEO, Laura McMurtie

134: my reply to Laura McMurtie

137: mail to Meredith Vivian, DH PPI Lead

142: another MP letter to Laura Mc Murtie

146: more circular evasion (refusing to recognise the ‘parent body’ accountability protocol)

151: prophetic mail from David Pink, Long term Medical Conditions Alliance (a member of the 2006 ‘Expert Panel’ on the future of PPI)

155: more CPPIH failure to reply

156: my letter to Public Concern at Work

158: PCW reply

160 and 164: eventual contact from Lowden and Fiona Wood January 2005 to my mail last November

169: my response to Fiona Wood

171: more CPPIH failure to inform

172: reply from Fiona Wood

173: FoI response from CPPIH (resignations, disiplinaries)

176: John Fearn’s letter to Rosie Winterton

177: mail to UNISON re ‘Year of the Volunteer’ CPPIH unfair practices

179: my initial formal complaint which led to the PO referral

181: the John Reid ALB review’s evidence of CPPIH incompetence

182: mail to the Committee on Standards in Public Life

183: DH omission and evasion?

185: my second formal complaint letter

186: JF complaint to Norwich and Norfolk Volunteer Service (FSO)

187: reply from the Committee on Standards in Public Life

188: my mail to Mental Magazine on DH consultation

189: MM responses

191 to 201: second stage of my formal complaint

198: “Why I Resigned” by a former PPI Deputy Chair

202 to 204: letters from a London PPI member

205: London member comments on CPPIH Standards of Conduct Policy

206: London member correspondence suggesting (amongst other things) CPPIH fraud

207: Paul Burns’ paper, ‘Justice for Patient and Public Involvement Volunteers’ (for the 2005 PPI conference)

209: the 2005 conference report ‘One Disenchanted View’

210: the first allegation of my defamation

211 to 226: correspondence around the defamation allegation

227 to 233: PPEyes launched

230: KMS freedom of speech?

234: CPPIH reply to my FoI request around employment policy (confirming flawed practice)

235, 238, 248: Equal Opportunities Commission correspondence

236: London member mail re employment practice

240: the threatening letter from CPPIH lawyers

241 to 260: various responses

254: FoI request to Lowden re public expenditure on lawyers

261: PPEyes closed down by CPPIH lawyers

263 to 275: various responses

266: FoI Lowden reply

271: my further FoI request including current resignation figures

276: fax from JF to his MP

277: my letter to PO Investigation Officer following his initial phone call

278: CPPIH FoI response showing dubious employment practice

279: my referral to the Information Commissioners Office re Lowden’s refusal to give information about public expenditure on solicitors

280, 281: PO action and CPPIH admission of maladministration

283: subsequent mail from JF

282 to 288: various responses

285: FoI results (resignations now 2248)

287: letter from PO Investigations Manager preparing to backtrack

289: Health Service Journal article by Ian Lloyd

290: PO Investigations Manager’s draft report (complete turnabout)

291: my response

292: PO final report to my MP confirming the ‘Ombudstwist’

296: summary of events leading to the Ombudstwist

297: my conclusions on the Ombudstwist

298: letter to an Observer journalist from a London PPI member

299: letter from an ex PPI member to his MP re the Ombudstwist

300: a response from Northern Ireland

301: London member to the Observer

302: mail from Committee on Standards in Public Life

304: up-to-date debate on PPI

Incompetent : “Not qualified or able (to do); not able to function; not legally qualified.” (Oxford Combined Dictionary, Oxford University Press, 1982).

“1 : not legally qualified
2 : inadequate to or unsuitable for a particular purpose
3 a : lacking the qualities needed for effective action b : unable to function properly.”
(Merriam-Webster Online Dictionary).

Equivocal : “Of double or doubtful meaning; of uncertain nature; questionable, dubious.” (Oxford Combined Dictionary, Oxford University Press, 1982).

“Subject to two or more interpretations and usually used to mislead or confuse.”
(Merriam-Webster Online Dictionary).

The most important element in this dossier of evidence is that it should be used as a learning tool for the future.



From the only known other new member of SNPCT PPI forum - Did you find the Welcome Day very useful? I did in parts, but I did get a little bit fed up of listening about the mileage rate! Have you had any correspondence from the PPI yet. I was under the impression that we were to receive further information about our working practises as well as a list of our other Forum members and about the LNP's. Our post can be a bit slow but I would have thought we would have received something by now, especially as I understand the start date is next Monday. Sheena 24.11.03


Hello Sheena.

Yes I enjoyed the day but Michael Cartiss is Michael Cartiss!!! 'Twas ever so. Bessie Boothroyd got a bit fed up too.

No I haven't heard anything from them yet but mailed the regional office on Friday saying so and asking if this might be because the Southern Norfolk PCT Forum are below statutory numbers. Also asked if this is so, what will happen?

Thought I would have a reply by now but nothing today. I'll copy their reply to you as soon as I have one.

Mike. 24.11.03.


Hello Sheena.

Still no e mail reply and nothing by post, but I phoned the regional office this afternoon and was referred to a person called Diana. She didn't seem to know what I was talking about and appeared to be in a slightly different universe to that of welcome day one. She said she had Southern Norfolk PCT down as South Norfolk (but would correct it) and kept talking of Norwich and Norfolk being notified and they would notify us?? She also said Norwich and Norfolk had a welcome day tomorrow and they could raise any queries then??

I told her you and I were appointed Forum members but couldn't contact others from our Forum because we don't know who or where they are. She told me there are only four, including you and I, who have signed and returned their assent forms but they are still waiting for other appointees to sign that they accept the offer of appointment. I'm afraid we're still in the position of not knowing who the other two definite appointees are. Perhaps it might be an idea for you and I to write individual letters to Cambridge (the address is on the CPPIH website under contact us) giving them permission to share our details with the others so they can contact us. I did ask her what would happen if we didn't get the statutory Forum numbers and she just said something llike: oh well - we'll just have to keep trying.

I've copied this e mail (at least I'm being open and transparent) to the regional office so they know that at least we're taliking to each other and hoping they might take note of what we're saying. If we hear nothing in the next couple of days I'll try to get some sense higher up.

Best wishes.

Mike. 26.11.03.


to CPPIH - Hello.

Sheena Garden and I are appointed Forum members for Southern Norfolk PCT. I mailed you last Friday saying:

At the PPI Forum members induction day 1 (Norwich 17.11.03.) we were told there had been an oversight in getting the above permissions and that these had now been sent out urgently to appointed members as the necessary permissions are preventing forum members contacting each other.

This is just to let you know (without being critical) I have still not had anything of the kind nor any other contact from you. I am wondering if this might be because numbers for the Southern Norfolk PCT Forum have fallen short (there were indications this might be so) and what will happen if this is the case?

MC 26.11.03.


Hi Mike. Am I under the impression that the left hand doesn't know what the right hand is doing? I thought we were told at the Welcome Day that our Forum had 6 members. I think I will give the CPPIH a ring to see if they can throw some light on the problem. I have a name there that I will ring, at least she is someone who I have spoken to before. I will let you know the outcome. Sheena 27.11.03.


Hi Mike
Spoke to James from the Welcome Day. He thought that we should have been kept up to date with any happenings. A list of our 6 forum members will be, or has been, (I can't remember which) passed to our LNP (Norwich and Norfolk Voluntary Services) and they will contact us about a meeting. A provisional date is the 9th December. The N & N V. S. phone number is 01603 883824 if we have any queries.
The Knowledge Management System password will be given to us by the LNP
I asked James if 6 forum members was sufficient for us to proceed and he said yes. There are 3 other possible members in the pipeline.
To get hold of James or any other members of the team, their phone number is now
01223 633900.
The guide book should be with us some time later next week!!!! Sheena 28.11.03.


to ppi@nvs.org and cppih - Hello.

I have two separate issues:

1. I am a PPI member for the above PCT. At the first CPPIH induction day two weeks ago now, we were told we would be individually contacted urgently for completion of Data Protection Act permissions and would be kept up to date with developments. This arose from concerns that some us did not know who all their colleagues are and could not begin to network; and concerns that the numbers appointed for this PPI would not reach statutory requirements (there were only two of us representing the Southern Norfolk PPI at the induction day).

At the end of that first week, having heard nothing at all, I mailed the CPPIH Eastern office to ask what was happening. I got no reply. When I phoned them the following Tuesday (of last week) their response was opaque which suggested they didn't really know what they were doing themselves. Following my own failure to get any sense, my colleague (Sheena Garden) phoned them and managed to speak to one of the CPPIH representative who was at the induction meeting.

Sheena was told we should have been kept up to date but that a list of our Forum members has been passed on to your organisation and it was implied that you will be responsible for keeping us up to date. Can you please tell me if this is accurate and, if so, let me know by return what is going on - it now a fortnight since the induction meeting and I think a respectful reminder is due that the PPI Forums are supposed to be up and running by today!!

2. At the abovementioned induction day we were told that our administrative supports and access to necessary facilities would be made available through yourselves. However, living where I do, I have encountered problems of access for myself as a potential volunteer, and for people in these rural communities to much needed voluntary services of various kinds.

In the context of putting together a small community newspaper, I had spoken to yourselves (including Neil Woodruff at Long Stratton) and other individual voluntary organisations about this in the past and received what I can only call evasive or indifferent responses. Because of this I have to say I was personally dismayed to learn that your organisation, having largely neglected this rural part of Norfolk, is to be our PPI Local Network Provider.

I will say now that trying to get into Norwich or even Long Stratton for administrative supports or to use facilities is not practicable and something I will not even consider. Can you then please tell me what arrangements you intend to make to fulfil your PPI responsibilities in my case.

Thank you.

Mike Cox. 01.12.03


Dear Mr Cox

I am sorry to hear about the problems you have had getting correct information. I will address the points you have raised and hope that this clarifies the situation. I have also spoken to the regional manager, Brenda Cook, to address some of the points which you raised which have a regional focus. I am particularly concerned that you did not receive a reply to your email. It is no excuse but I know that the Regional Office has been very busy interviewing and training forum members.

1. Data protection information. I checked this with Region and think that there may have been some misunderstanding about the information which you were given. On the original application form there were 2
boxes which forum members needed to tick to ensure that information could be passed on to the Forum Support Organisations( the new name for Local Network Providers). There needed to be signed information about Data protection from Forum Support Organisations which was submitted at the end of November. As a
result we received details of our forum members at the end of last week (Thursday) and are in the process of examining details. As you are probably aware recruitment is continuing at the regional level. I understand from the last figures released (today) that the Southern Norfolk forum has reached its required number of 7.

As regards sharing information about other forum members, it has been agreed that individual forum members at the early forum meetings will be able to indicate if they are happy for their personal information to be given out to other forum members. Some people have indicated that they would not want to have this information shared. This is obviously something which will be addressed at the first meetings.

2. I note your comments about access and we are very keen as the local Forum Support Organisation to explore with individual forum members any practical issues around meetings, venues times etc. ( on the information which we have received I understand that you would not be able to make morning meetings). The first informal meetings in December will again be an opportunity to find out what are the preferences of the forum members. As you will know from your welcome day one of the important elements of the PPI forums was not to predetermine how and when and in what way members meet and communicate. These first meetings will give the forums a chance to consider flexible ways of communicating and working together such as emails/internet. We would anticipate exploring with forum members their support requirements in an equally flexible way. We can also use your local knowledge as forum members about meeting places to ensure that the maximum number of forum members can attend meetings.

Although NVS is the lead organisation for the local consortium the running of PPI will be carried out by a new team of staff who have been specifically recruited to this work. I note your comments about your previous experience of NVS and will pass them on to the organisation.

Our next step is to contact the forum members who have been confirmed in place and to organise informal meetings in December. The first formal public meetings of the forum will be in January.

I hope this information is helpful and thank you for bringing your concerns to our attention.

Best Wishes

Mary Mustoe
PPI Project Set Up Co-ordinator
direct line: 01603 883 824 01.12.03.


Hello Mary Mustoe.

Thank you for your prompt reply. That is very much appreciated. Part of the frustration is around the strongly promoted requirement that PPI Forums will be responsible for their own running and how they go about this - the current arrangements seem to be setting up barriers to that and PPI independence appears to be being compromised by organisation via a third party.

Just with reference to your note about my limits for meetings. The baseline is that I need about two and a half hours to get out of the house in the mornings. This I do reliably for about seventy five percent of the time - which means if there is a meeting first thing in the morning I can usually make it by rising earlier than usual (as with the induction day a fortnight ago). The problem is with the other twenty five percent of the time when unpredictable snags crop up, which means I can never GUARANTEE to attend morning meetings.

I should say too that my remarks about access were not in relation to meetings - I am happy to get to a meeting anywhere, providing there are reasonable parking facilities. Those remarks were around necessary direct access to administration, office facilities, hardware and softrware - a topic which came up at the induction day and of which it was said that LNP is there to meet those eventualities. There obviously needs to be some discussion about this in the first meeting with yourselves.

Best wishes.

Mike Cox. 02.12.03.


Thanks for your comments and I hope this is the start of a productive
dialogue which can ensure that everyone feels fully able to be involved.

There is a letter coming out today to all Forum Members about the
informal meetings in December.

However, I can let you know ahead of that letter arriving that the
meeting for Southern Norfolk will take place at the Breckland Lodge at
Attleborough which has ample parking facilities. The time of the meeting
is at 2pm so I hope that this will be convenient and mean that you do
not have to rush. The date of the meeting is Monday 15th December 2003.
If you are not able to attend the letter will give full information
about how we can proceed.

I hope we can meet on the 15th and look forward to seeing you then.

Best Wishes

Mary Mustoe
PPI Project Set Up Co-ordinator 02.12.03.


Hello Sheena.

Chief Executive NHS guidelines to all NHS bodies to which PPI Forums are relevant downloadable as a PDF file from: http://www.doh.gov.uk/cebulletin4december03.htm#8

This very clearly summarises PPI functions, powers, roles and the requirements of all NHS and local authority bodies to comply with PPI powers.

Best wishes.

Mike. 06.12.03.


Document produced for 1st forum meeting on 15.12.03.

First PCT PPI Forum Needs

A Draft Discussion Document

The revised (Feb 2003) core DoH PPI policy document

The main emphasis from the new duty is that open discussion with patients, the public, and with staff, needs to begin right at the beginning .”
“All stakeholders need to feel that they have had the opportunity to influence the debate at important stages, and that they have been kept properly informed throughout.”(my italics)

This is intended to be a basis for joint and individual contribution. It is founded on the stated functions of Primary Care Trust PPI Forums contained in:

  • The NHS Reform and Health Care Professions Act 2002
  • The Patients’ Forums (Functions) Regulations 2003 No. 2124
  • The guidance notes to all NHS bodies issued by the NHS Chief Executive Officer on 04.12.03.

The above functions as set out in the Chief Executive notes are reproduced here and attached.

Each needs section is on a separate page with room for written individual and joint deletions, additions and suggestions. Separate continuation sheets can be used if necessary.

Immediate Information Needs:

  • designated SNPCT PPI Forum contacts
  • contact details for local PPI leads and PALS managers
  • details of SNPCT catchement area
  • what is SNPCT doing around new GP contracts?
  • copy of the ‘Strengthening Accountability Practice Guidelines’
  • copy of the SNPCT ‘local delivery plan’
  • copy of the SNPCT ‘baseline assessment’
  • copy of SNPCT ‘strategy for patient and public involvement’
  • copy of SNPCT ‘PPI planning process’
  • access to SNPCT’s ‘involvement and consultation diary/database’
  • access to ‘Cabinet Office guidelines’
  • copy of the ‘local compact’ for partnerships
  • what epidemiology arrangements exist?
  • which PCTs border ours and who are the contacts?
  • proportions of SNPCT patients where primary care straddles boundaries
  • directory of all (including private) services commissioned by SNPCT
  • all specific hospital trusts used by SNPCT
  • existing patient groups and societies
  • existing voluntary organisations (including those operating in our area from adjacent counties)
  • details of Local Authority Overview and Scrutiny Committees, including county overlaps.
  • details of any plans for Care Trusts/Children’s Trusts
  • details of any other LA partnerships, i.e. services for older people, mental health, learning difficulties
  • details of Commission for Health Improvement contacts
  • details of Commission for Health Audit Inspection contacts
  • details of Patient Environment Action Teams contacts

Immediate Training Needs:

  • public presentation
  • relating to the media
  • new legislation and developments
  • anti discriminatory practice
  • ethics, values and PPI protocols
  • advocacy
  • information technology

Support Needs:

  • accessible administrative and secretarial facilities
  • accessible office facilities
  • materials and resources for working from home
  • available specialist professional resources when necessary
  • accessible and readily available reference and advice services
  • ready references for medical jargon and doctors’ codes

Primary Care Trust PPI Forum Functions

The NHS Chief Executive Officer’s guidance notes of 04.12.03. provide a good summary of the functions which are directly quoted below. He says “...all PPI forums”, and this list includes the additional functions of “PPI forums set up for PCTs” (below the dotted line), “will:

  • monitor and review the range and operation of services provided by NHS Trusts and in the case of Forums set up for PCTs, services provided and commissioned by the PCT

  • provide advice, reports and recommendations based on the reviews that they carry out

  • obtain the views of patients and their carers about the range and operation of services and report those views to the relevant trust

  • refer matters of concern to the relevant overview and scrutiny committees and/or the CPPIH (and others)

  • make available to patients and their carers advice and information about services
  • promote, encourage and support the involvement of the public in consultation exercises and processes relating to health policy development locally

  • provide advice to NHS and other bodies about how to encourage public involvement

  • provide information and advice about complaints procedures

  • represent the public views on matters that affect their health

  • provide independent complaints advocacy services when the existing arrangements come to an end” (see paras 29 and 30 of the notes)

N.B. (and others) above refers to the provision in the Act that Forums can: “make such other representations or referrals as it thinks fit, to such persons or bodies as it thinks fit, about matters arising in the course of its exercising its functions.”


Patient and Public Involvement in Health Forums

Informal Meeting of the Southern Norfolk Primary Care Trust
Patient And Public Involvement Forum
15th December 2003

1. Attendance:
Mike Cox - micox@btopenworId.com
Helen Darby
Ca role Darnell - pawhouse@btinternet.com
Sheena Garden - sheenagarden@hotmail.com
David Sanders - davidsandersspringhousTe2O2161.fsnet.co.uk1 61

Mary Mustoe - Project Set up Co-ordinator
Stephen McCormack - Forum Support Organisation Manager
David Fuilman - Forum Facilitator - East Anglian Ambulance Trust
Helen Wilson - Chair of Southern Norfolk PCT (joined for the final 30 minutes)
Jonathan Cook - Southern Norfolk PCT oined for the final 30 minutes)

2. Welcome - Mary Mustoe welcomed all present to this first informal meeting. Ann Polley, Director of Norwich and Norfolk Voluntary Services (NVS), was unable to attend this meeting because of sickness but Mary extended a warm welcome to Forum members on behalf of Ann and the Consortium.

The Consortium, of which NVS is the lead agency, is made up of a variety of organisations including: Age Concern, Glaven District Caring Community, Norfolk Rural Community Council, Norwich and District Citizens Advice Bureau, Norfolk Coalition of Disabled People, Norfolk Deaf Association, Norfolk Federation of
Women's Institutes.

As Forum Support Organisation for Central Norfolk, NVS is therefore responsible for 7 Forums, one each for:

° North Norfolk Primary Care Trust
° Southern Norfolk Primary Care Trust
- Broadland Primary Care Trust
° Norwich Primary Care Trust
° East Anglian Ambulance NHS Trust
° Norfolk and Norwich University Hospital NHS Trust
° Norfolk Mental Health Care NHS Trust

Lorraine Nelhams will be the Facilitator for the Southern Norfolk Primary Care Trust Patient And Public Involvement Forum. She will begin working part time on 19th January 2004

Mary then introduced Stephen McCormack who has been appointed as the Patient and Public Involvement in Health Forums

Forum Support Organisation Manager. He will be responsible for managing the Forum Facilitators and their administration supportT and is managed by Ann Polley, Director of NVS

3. Stephen outlined to the meeting the FSO future hopes for the Forums. The aim would be to build on work done previously by organisations such as the Community Health Councils whilst also recognising the talents and skills of Forum members who had come to this work to make a difference and contribute their knowledge and expertise. The role of the Forum will be developed by Forum members in line with the rights and responsibilities given to them by their statutory duties. The role of the Forum Support Organ isation and Facilitators is to enable Forum members to operate efficiently and to be supported in this task.

Stephen reiterated the details of Mary Mustoe's letter to Forum members that this first meeting was an opportunity for Forum members to meet together informally and to share information about themselves.

4. Introductions - David Fullman, who is the first Forum Facilitator to be in post led, a session on introductions. The meeting agreed that this information could be shared with other Forum members. It was asked that those members who were not able to attend today could produce an introduction which could be shared at the next meeting.

Mike Cox - has experience as a patient and in mental health social work.

Helen Darby - lives in Old Buckenham. Her background is medical and scientific and she has worked in research for most of her life. She can talk the language that is used within the NHS and is happy to provide translation services.

Sheena Garden - was a clerical officer at St James University Hospital in Leeds and then moved to Norfolk. She wants to put something back into the NHS.

Carole Darnell - was an auxiliary nurse and worked with Thames Valley police. She is also a patient.

David Sanders - is also a patient now. He worked for 28 years with the Medical Research Council. He was a member of the Community Health Council and was their observer on the PCT.

Stephen McCormack - Stephen has a financial background with a variety of large banking corporations working with people and change management. His mother was involved with the CHC in Gateshead and his father had very poor health suffering from a very early age from TB and its historic treatment. Stephen and his family received a great deal of help from the NHS and he wants to be able to contribute to this initiative as a way of putting something back.
Patient and Public Involvement in Health Forums

Mary Mustoe - Project Set Up Co-ordinator for NVS in this initiative, background in Probation, Social Services, Voluntary Sector and Partnership working including Drug Action Team and Connexions.

David Fullman - David came to UEA over 30 years ago and never left the area. He worked in the NHS in the Hospital stores and then finance before moving to the Civil Service. Offered and accepted a leaving package and was able to follow up a range of voluntary and local community work including being a City Councillor.

5. Forum Members' guide
Forum members were given the most recent edition (version 6) of the draft guidance for Forum members.

The Commission is keen to hear from Forum members how useful they have found this draft document and if there are any things that they would like changed or inserted. The date for responses to this draft is the 10th January 2004 although the final version will be reviewed after about 6 months of use to encapsulate any more contributions from the Forum, etc.

David led the group through the major items in the guide and referred them to page 5 for the terms of reference for Forums.

The Forum agreed it would be helpful if members could familiarise themselves with the contents before the meeting in public in January 2004.

Mike Cox handed round a document that contained his thoughts on the initial needs of Forum members.

6. Trust liaison - Jonathan Cook, Director of Clinical and Corporate Governance at Southern Norfolk PCT was welcomed. His responsibilities include risk management, staff education, PPI and communications. He is a nurse by background. A Sub-Committee of the PCT Board is dealing with PPI from their point of view, and they would like to involve a representative of the PPI Forum in this. They need to review how they communicate.

Helen Wilson joined the meeting and stressed that the PCT recognises the value of the PPI Forum and wishes to work very closely with it.

7. Membership and the Our Health Network - Mary talked about the
continuing recruitment process and the need to ensure that there is representation from the whole community. Certain groups seem to be difficult to involve and Forum members were asked to consider their ideas. The 'hard to reach' groups included: younger people, ethnic minority and faith groups and those with disabilities.

Patient and Public Involvement in Health Forums

Mary also reminded people of the Our Health card which the public could fill in to be consulted on specific matters, even if they were not able to commit themselves at this stage to joining a Forum. Press and local contacts were something which it would be useful to build up knowledge about for the future recruitment.

8. Meeting in Public January 2004 - In order to give maximum notice to Forum members and to ensure that the necessary timely press announcement was made it was agreed to fix a date for January. The first Forum meeting can look at future dates, times, locations etc. and it was agreed that there should be a grid of availability circulated with these minutes. The proposed date is Wednesday 21st January 2004 in the Central Hall, Back Lane, Wymond ham NRI8 OQB. It was agreed that there should be a pre meeting at 11am with the meeting in public beginning at 1I.3Oam. This would give those not able to attend today's meeting a chance to meet other Forum members and share information before the meeting in public began. One issue that needs to be discussed at that meeting is publicity.

Items for the agenda to be notified to ppi@nvs.org.uk or care of the NVS address.

In discussion some members were happy to share their contact details and their emails follow their names in the attendance list.

9. Close of meeting
This had been a very useful meeting and Stephen thanked everyone for coming and contributing to a very productive discussion.

N.B. There is no mention of the work I did for this meeting, nor the debate around it - there is just one reference to my paper being handed out - nothing more.


Hello All.

"Our vision is to move away from an outdated system of patients being on the outside, towards a new model where the voices of patients, their carers and the public are heard through every level of the service, acting as a powerful lever for change and improvement." ('Involving Patients', Department of Health, September 2001).

As a worried involved witness to how the PPI forums legislation is being implemented I wrote the following letter to Brenda Cook (Eastern England CPPIH) on 16.01.04. It is copied here for your information. I must add that these are my own views and they are not representative of any other organisation or individual, and they are apolitical.
Dear Brenda Cook.

Southern Norfolk PCT Patient and Public Involvement Forum

It is with great regret that I have to write to you about some concerns regarding the early stages of the above PPI forum. I do realise that establishing a completely new organisation brings many difficulties but my view is that fundamentally important principles and legal requirement are going by the board and while this is happening, patients, with the extinction of Community Health Councils, are left without a voice. In Commons questions on 28.06.03., Dr Ladyman, in reply to queries about the viability of the new arrangements assured the House that the Commission for Patient and Public Involvement had been established since 01.01.03. and: “The new patients' forums—one for each of the 571 trusts will be in place(my italics) from December to monitor and review the NHS and do much more.” My concerns are:

1. PPI Forums are supposed to have been up and running since 01.12.03. In addition to CPPIH having been established eleven months before then, the developments had been known about and could have been prepared for well before now - I can recall talking to you about the developing ideas over two years ago. At the moment, it feels as if there is a deliberate management strategy in place to stall and delay creating a patient and public involvement black hole. Perhaps it is naive of me to expect competent implementation: look at CAFCASS, CRB and Tax credits - PPI seems to be going the same way.

2. our FSO, rather than fulfilling its statutory role to provide us with support services, is interfering by trying to direct and control the Forum. Despite my pointing this out at our meeting on 15.12.03. (omitted from the minutes) they persisted then and not only have they decided when our first public meeting will be, they have issued an agenda for that meeting without, as far as I know, consultation (certainly not with me anyway). Further to this that FSO agenda has no “Key Meetings” content. They have ignored a consultation paper on the first needs of our Forum which I produced for that meeting.

3. the FSO has failed, so far, to provide accessible office and administrative support and despite clear requests for information have failed to produce that information.

4. despite representations from the outset we still do not know who all the members of our Forum are. Five of us have met. We are told there are two others but who they are is, for some reason (there has been acres of time to clear up any Data Protection Act necessities) being kept secret. There are two points here: the Forum cannot function because of this secrecy; and this secrecy is in breach of openness and transparency.

The reason I am involved is through at least an eighteen month keen interest and belief in these new and fresh concepts and I have set aside other demands on my time and skills in favour of a commitment to PPI. However, with some disillusion a point must be reached where thoughts of other, more positive directions and projects will have to acted upon - which are such that there will be very little time to spare for PPI when and if it gets moving. I was involved, in the early 1980s, when the embryo service user and carer movements were getting off the ground. For years organisations just paid lip service to these. Do I smell deja vu over the horizon?

In conclusion, we must remind ourselves that the ‘Nolan’ rules apply equally to yourselves and the FSOs. Are you content they are being observed?
I think it is of paramount importance that PPI Forums are truly independent; that patients' and public voices and decisions are their own and not voices and decisions hijacked by the NHS, the CPPIH, the Forum Support Organisations or political propaganda.

I also believe the meeting on 21.01.04. is less than legitimate and for that reason I will not be attending - to do so would be to condone the hijacking. I will return to full participation if I get a satisfactory reply to my letter with written assurances about true patient and public free and independent debate and decision making.

Best Wishes.

Mike. 18.01.04.


Dear Mike
I shall be attending on the 21st and will take up your concerns. I am not happy myself at the way this is all unfolding.
As you point out the government has had some two years to get the forums organised and they could have arranged an overlap with CHC to make it a smooth transition. I shall be reviewing my position in the near future .
Best wishes David Sanders 20.01.04.


Hello Sheena.

Many happy returns! Betcha Yorkshire was happier.

Have just had the 2nd welcome day notice through today - 5th February at UEA. No authorisation yet but had a long, amiable and interesting telephone discussion with Brenda Cook yesterday in which I was impressed with her frankness about Commission difficulties. I didn't ask her about the authorisations but from what she said about the situation, I would venture that we would not be able to be authorised until we are a viable Forum with seven validated members.

She is going to speak to the FSO today, check specifically on the current status of our Forum and let me have a written response to my letter. I'm waiting to see what happens in the next few days but will probably see you at UEA if that's your date too. Will let you (and everyone else) know when I get some info in black and white.

Best wishes.

Mike. 22.01.04.


Hello Mr Vivian.

Can you please help with this query or pass it to the appropriate person.

I am an appointed member of the Southern Norfolk PCT PPI Forum. There is a problem here: there are numerous statements from your department to the effect that PPI Forums were established in all NHS Trusts on 01.12.03. This is not accurate - our PPI Forum is not yet established for reasons that to date we only have five appointed members and:

The Patients' Forums (Membership and Procedure) Regulations - 2003 No. 2123.

2. (1) A Patients' Forum established for an NHS Trust shall have at least 7 members and a PCT Patients' Forum shall have at least 7 members plus members to be appointed under paragraph (4).

However, there seems to be some wooliness about the Regulations because later they say:

10. (2) The proceedings of a Patients' Forum shall not be invalidated by any vacancy in its membership or by any defect in a member's appointment.

Can you please clarify.

Yours sincerely.

Mike Cox. 23.01.04.


Dear Mr Cox

Thanks for your email.

First may I offer you my congratulations on becoming a PPI Forum member - I hope it proves to be a constructive role for both you and the PCT

I do not think we have said anywhere that PPI Forums were established in all trusts on 1 December 2003 - if you can find any examples of such statements I would like to see them. As you rightly point out not all PPI
Forums had their full complement at that date. In fact, PPI Forums were established as legal entities on 1 September 2003 - but clearly they are not formally constituted until they have 7 members - as you rightly say.

The regulations are flexible on the point you raise. They allow for the possibility that whilst a PPI Forum should have 7 members it is conceivable that for one reason or another there may not be 7 available - some leave, some are temporarily out of commission, or it may be that only five have so far been appointed. The intention though is clear - that there should be 7 - and that if there are some vacancies the proceedings are not invalidated.

My advice on this would be for the members to put in place a protocol which satisfieds them, about the number of members that must be in place for the Forum to go about its business. A PPI Forum is after all an independent body and able to manage its own affairs as it sees fit.

I hope this is helpful

Kind regards

Meredith Vivian
Head, Patient and Public Involvement 25.01.04.


Hello Mr Vivian.

Thank you for your very prompt and helpful reply.

A small selection of quotes from your website is copied below. I suppose we could differ about semantics but I would suggest that the clear impression given to any member of the public is that all PPIFs are up and running - potentially a disappointing and disempowering hiatus for patients and public, more political misinformation from a Government Department, frustration and dissillusion for many PPI appointees, and a disincentive for future volunteers.

Position Statement (Involving Patients):

"A PPIF has been set up in every Primary Care Trust and NHS Trust,...."

PPI Forum establishment:

"On 1 December 2003 PPI forums became operational."

DoH Directions to all Trusts (Gateway reference 2413) 04.12.03.:

"all PPI Forums are now in place"

Yours sincerely.

Mike Cox. 26.01.04.



Thanks for this

I understand your concern but do think your analysis of the result is rather dramatic - there is a brief time when numbers are reached and in the meantime much work can be done to develop the role of PPI Forums even without full membership.

When the information you cite was prepared we were very encouraged by the progress the Commission had made in recruting members - and the final completion is now even closer.

Good luck with your PPI Forum activities


Meredith 26.01.04.



I have forwarded to Brenda Cook a copy of your below letter - I have noted that you need to add a "." between "Brenda" and "Cook" in your e-mail address for her and she will receive the e-mail direct as you had

I have also copied the note to Lorraine Nelhams your Forum Facilitator to update her records for the Forum.

We are awaiting feedback from the all the other members of the Southern PPI forum about the information you forwarded to them about the operation of the Forum in its situation of less than 7 members. Additionally, I am awaiting confirmation from Brenda Cook about the fact that in fact the Forum may now have 7 accepted members. I will update all members of the Forum if the latter fact is confirmed.

Best Wishes

Stephen McCormack
Forum Support Organisation Manager
Tel: 01603 774321 27.01.04.


Dear Mike
at the meeting on 21st Jan we were joined by a new member , five of us then present.I put it strongly to the FSO that as there was no reference to Quorum in the guidance or Statutory Instruments we could not afford to wait while they recruited more members before we start work. They agreed to seek clarification on this point.
It would seem from the reply you received from Meredith Vivian that I was right and that we can set our own protocol as regards the Quorum we need for our meetings.
At this point of the meeting we started with the agenda as provided by the FSO. After some discussion I was asked by all those members then present to become chairman. I accepted the position initially for one year and I will review the situation after six months, by when I hope we have more members. I then took the chair for the duration of the meeting.
I will not go into all the details of the meeting here as you will get a copy of the minutes as soon as they are ready. However it was agreed that I would be the link for liason with the PCT.
Clearly we could not discuss properly the whole of the adgenda set by the FSO in the time, we have made a start though. It will take us a while to find our feet but I am optomistic that we can now begin to make the Patient and Public Forum a reality.
Regards David 28.01.04.


Hello David.

Thanks for the update, I'd heard nothing. Good news. You have my full support as Chair and PCT rep.

More news from Stephen McCormack to follow. If you're at the 5th Feb Welcome Day, see you there.

Mike. 28.01.04.


Hello Stephen.

Thank you for the information. I wondered why the CPPIH mailmaster kept sending me error messages. From what she said on the phone, she seems to have been receiving them anyway but I've made the amendment.

Do you now have contact details for the members who are not in my e mail group. For members without e mail facilities I would like the FSO to please forward group messages ASAP by other means.

Does Lorriane Nelhams have her own telephone number and e mail address?

In our phone conversation I suggested to Brenda Cook that in the interrim whilst awaiting the full operation of the PPIF, the appointed members could use the hiatus for training. She agreed but said this is your function and you were waiting for requests to come from the membership. I told her training needs were included in my paper of 15.12.03. Have you made any progress on this?

Best wishes.

Mike. 28.01.04.


Hello Everyone,

I have great pleasure in confirming that we have a 7th member for the Southern Norfolk Forum - Mrs. Jane Mewes, which means the meeting arranged for Wednesday 18th February can now be a meeting in public.

I shall be sending you the notes of the meeting of Wednesday 21st January plus other documents relating to these notes in a series of e.mails. This will unfortunately, on this occasion, take you over the 4 pages that was agreed at the last meeting but I wanted to ensure that you had all the relevant information.

In addition there are some documents that I shall have to forward to you in hard copy form through the post.

With best wishes,

Lorraine Nelhams
PPI Manager ppi.manager@nvs.org.uk 30.01.04.


Hello Lorraine.

Sorry. You are obviously using Windows and Microsoft files. Your last two e mails came to me garbled (this one and the notes of 21.01.03. Your announcement about the seventh member came through OK but this is the first I've heard about a meeting on 18th February and, although I've nothing against public meetings providing they are accessible for everyone, there is no need for a meeting to be public unless it is dealing with items under para 10 (4) of the Patients' Forums (Membership and Procedure) Regulations 2003.

Additionally, para 10 (1) of those Regulations says: ...a Patients' Forum may conduct its meetings and proceedings in such a manner as it may determine. So why are you arranging the meetings? As I have said before, the FSO must NOT try to manage the PPI - you are there to support and facilitate and even your title is a misnomer which could lead to constant tension between PPI and FSO.

My computer is a Mac with OS 8.1. My word processor is Appleworks v 6. I use Outlook Express, Macintosh Version 5.02 for e mail. I can translate Word files but the page format is sometimes lost in the process. Forms will not translate. If you haven't Mac compatible software you will need to send items to me as PDF files.

Today I received hard copies of a list of current members with contact details, confirmation that Ambulance is the preferred provider for the new primary care out-of-hours service and a survey questionnaire dated February 2003 with CHI scoring on. There was no indication from whom.

I hope we can get these issues resolved quickly.


-Unless it is stated otherwise, the views expressed here are apolitical and entirely my own and not representative of any other individual or organisation.


Dear Mike
with regard to your query about the meeting on the 18 Feb: The decision as to the date and timing of this meeting and the frequency and nature of future meetings was arrived at by a consensus of the members of the forum present on 21 Jan to suit our several and individual commitments, no pressure was applied by any member of the FSO or Commission. Had you been present you would have been party to these decisions.

With regard to our Facilitator Lorraine Nelham the choice of title was not hers; this is one of a great number of job titles dreamt up by authorities to mollify or confuse people, or as a substitute for a pay rise. Lorraine is our secretarial support and amongst other tasks we ask her to undertake she will coordinate our efforts, and with seven individuals to contend with this will take some time and patience. Lorraine has made a
excellent start and needs all our cooperation if we are to provide the answers about the health needs in Southern Norfolk (doubtless not always those the authorities want to hear). About the Out Of Hours question, this will come up at the meeting on 18thFeb
Best wishes David
ps sorry about your Mac. 03.02.04.


Hello David.

You headed your message GP Questionnaire..... but said nothing about that!

As I said, I support your election as Chair (you may recall we had some discussion about that anyway) and have respect for legitimate majority decisions.

I must underline though that, from wide experience with how the service user and carer movement went badly wrong in the initial years because of professional and corporate interference with its true independence, this issue is non-negotiable and if necessary I will pursue it separately outside the Forum. The patient's voice must be independent right from the very start and not influenced, coloured, cajoled, undermined, distorted, persuaded or pressured by corporacy or professionalism.

I did not attend the meeting on 21.01.04 because the meeting, having been managed and arranged by the FSO, not the Forum, was not a legitimate Forum. However, I have gone along with the Forum decision to elect you as Chair made at that time despite not having had the opportunity to debate the decision - I could have challenged it on the grounds of it being unconstitutional. I expect though, to be consulted on meeting times, dates and venues and other decisions and insist that should still happen. Additionally, however much a dissonant lone voice I'm seeming to be, as a member of this Forum I expect, even just out of courtesy, to have information about all Forum decisions within a reasonable time. Is my being kept uninformed some sort of childish penalisation for daring not to attend that meeting?

As for the FSO (and I'm not pointing at Lorraine Nelhams personally - it just happens she is now the FSO conduit for us), the competence of this organisation to carry out its role and functions must be under question - from the start they have tried to steer, control and manage the Forum; they are obviously Norwich centric and they offer office and administrative facilities to me that are not accessible for me - a reflection of how the NHS makes access difficult for people in rural areas; they have failed to provide expenses forms and information requested shortly after the meeting on 15.12.03; they have failed to provide training opportunities (Brenda Cook said this is their delegated responsibility); and now they have failed to take account of varying communications facilities - Macs are hardly uncommon (I don't find your comment funny) and in the interests of equity an organisation purporting to fulfil the functions of the FSO must have the software or equipment necessary to cover variations, not to do so is exclusion.

Lorraine's title is plainly unacceptable. The use of language is important and sensitive and employment strategies are no excuse. I would have expected a voluntary services organisation to have been especially conscious of that. This title installs a fallacious mindset both within and without the Forum - it must be changed.

Can somebody please tell me when and where the meeting is on the 18th? I will expect the agenda to include the issues set out here. I have also, as agreed with Brenda Cook, been doing some groundwork and however insignificant that might be I will expect a slot to report it.

Mike. 03.02.04.


Hi all
At last we are legitimate with seven members which means our next meeting on 18 Feb will be held in public.
We already have several items for the agenda but need a few more topics . 10 pm till 12 will give us two hours, probably enough for a start. Any ideas we cannot fit into this first real meeting can be held over until our next. E-mail me and Lorraine with your ideas and we will get out a final agenda.
Keep your ears to the ground, several items concerning the NHS and health in general have been in the news over the last few days.
Best wishes David Sanders 03.02.04.


to cppih - Hello.

In accordance with your values statement can you please tell me what the Commission's formal lines of accountability are?

Mike Cox. 04.02.04.


Hello David.

Agenda Items.
1. The role and functions of the FSO.
2. The FSO title PPI MANAGER.
3. Accessible office and administrative support.
4. Meeting times and venues.
5. Patient and public contact points.
6. Public communications and publicity.
7. Inequities in Primary Care access: Loddon Surgery and Beccles Practice.
8. Inequities in Community Mental Health Service access: Loddon Surgery and Beccles Practice.
9. Audit of cross-border Primary Care variations throughout the PCT.
10. Access to subsidiary services (i.e. Social Services) for patients in rural areas.
11. Facilities for a) direct PPI participation of, and; b) consultation with people who have special communication difficulties.
12. Consultation with patients with learning disabilities about the Learning Difficulties Pooled Budget arrangements.
13. Liaison and representation arrangements with other PPI forums.
14. Hospital Trust representation.
15. Correspondence and stationery.
16. Expenses.
17. Orthopaedic services.
That will do for now. I understand you already have Out of Hours Arrangements on the agenda.

Mike. 04.02.04.


Hello David.

Well at least I now have a time, not that its much use - but I still don't know where this meeting is!

You need to know - and I gave CPPIH this information from the start - That because of a disability, I have problems getting to events before 11am, especially if the event means I have to travel some distance to get there. I can, by making special arrangements, usually get to earlier events if their timing is unavoidable but that is exceptional. This is all you and the other Forum members need to know - the CPPIH does have details but those are private.

The PPI HAS TO take account of this. Not to would be in breach of the Disability Discrimination Act.

Mike. 04.02.04.


A reply from one of the many organisations I contacted to research what they thought of PPI. The vast majority had no knowledge of PPI.


I was personally involved with the Transition Advisory Board regarding the demise of CHCs, so I knew roughly what to expect with PPI Forums from the start. Not that the Government listened to much they were advised, but heck, when do they?

UKC were strangely asked to tender to provide PPI support to three forums in West London; we are based in South London and the three forums concerned were 2 in one place and a third unconnected NHS trust somewhere else. So, knowing that there was little enough money in the pot to support these forums, there was no way I was going to let us get sucked into a loss leader situation where the work required couldn't be done for the money available.

However, since then I've sat on the London Specialised Commissioning PPI Reference Group which is not a CPPIH forum only to find that the training offered to CPPIH forums is abysmal, so we are looking elsewhere for ours. The LSCG reference group has only been running about 6 months, but we recently put a review of HIV commissioning under the microscope because there are actually 7 people with HIV on the group alongside 18 others from other niche illness groups.

That review has reinforced the need for involvement of plwha in London because it is absent from just below top right the way to the bottom, except for the 3 clinics which have user groups of one sort or another.

The reason I've spent so much time on London is that there is a chance that some of the systems put in place might transfer elsewhere.

Involving people with HIV in rural areas is much more complex because there is much more to be lost through disclosure of status in communities where little is secret. But I don't need to tell you that, you know it. If you need examples, look at our internet discussion board ( www.ukcoalition.org/discus ) for <http://www.ukcoalition.org/discus ) for> some of the comments by people in rural areas.

You may know that UKC and Positively Women, with NAT and the National Long Term Survivors Group, are organising a national conference of plwha this September. The major thread will be Involvement and skilling people up to be more involved. As well as the Health Minister, we are hoping to have Sharon Grant and the Dept of Health director of PPI to learn from the event. Dept of Education and Skills are funding some work that enables us to measure what people learn from the event and how they use the knowledge afterwards.

Working from there we may be able to persuade a few plwha in rural areas to take the leap on disclosure and involvement and also to produce a toolkit that gives examples of ways in which plwha can be involved.

Does this help you at all? I would be interested to hear how you get on in Norfolk.

Best wishes 03.02.04.


Hello David.

Couple more agenda items:

Primary Care counselling services;

Draft Complaints Regulations consultation.

Mike. 04.02.04.


Dear Brenda Cook.

Southern Norfolk PCT Patient and Public Involvement Forum:
Welcome Day 2, UEA Sportspark, 05.02.04.

On the return form for this ‘Welcome Day’ I told you that it is not possible for me to participate in group discussions where there are several groups in one room. This is because I am deaf in one ear and the background noise generated obliterates verbal communication from other members of my own group.

I received a telephone call from your office about ten days ago saying you didn’t know what you could do about this. I suggested that it had been accommodated in past training activities by holding the groups in separate rooms. Your officer said he would ensure the ‘Welcome Day’ facilitators knew about this so they could make adjustments.

On arrival I found myself having to sit in a small group of four strangers at the back of the room (although I’m not suggesting this was deliberate, there was very clearly no room at the table at which my own Forum members were sitting - additionally, that only underlined a distinct feeling of alienation and exclusion from that Forum because of my challenges to the way things have been organised). The facilitators made no attempt to make any adjustments and gave no hint of recognition that there is a problem when they could obviously see me isolated and not able to participate in the first group exercise. I do not think they had any knowledge of the problem. One of the other group members did eventually try to engage me but I was certainly not going to go yet again through the embarrassing explanations of my shortcomings.

There being no point in trying to continue with the day, I left at the first reasonable opportunity not likely to cause disruption.

To top this off, I had submitted a list of agenda items (a copy went to you) for a meeting arranged for 18th February without consultation with me. On arrival at today’s event I was handed an agenda (and information about the meeting of 21.01.04 which I had not had until today) by David Saunders, Chair of the SNPCT PPI Forum, for that meeting with none of my items included.

At the entrance to the ‘Welcome Day’ I was met by Stephen McCormack of the FSO who offered a special meeting to discuss my challenges. I accepted this suggestion readily. However, after the debacle today I have concluded that my values of openness, patient voice independence and anti-discriminatory practice are, in reality, not congruous with what turns out to be the rhetoric of the PPI arrangements and that there is little point in putting myself through further stress.

I wish to resign my appointment as of now.

Despite my telephone request for expenses information and claim forms to the FSO shortly after the meeting on 15.12.03. I have received nothing. This then is my PPI mileage to date:
15.12.03. Meeting at Breckland Lodge, Attleborough. 84 miles
19.12.03. PCT meeting, Breckland Lodge, Attleborough 84 miles
Researching rural community public access points:
26.01.04. Loddon and Chedgrave 17 miles
27.01.04. Haddiscoe, Burgh St Peter and Aldeby 16 miles
02.02.04. Gillingham, Geldeston, Kirby Cane, Broome and Ditchingham 23 miles
05.02.04. ‘Welcome Day’ at UEA, Norwich 46 miles

Total 270 miles.
Yours sincerely.
Mike Cox. 05.02.04.


Hello David.

I have resigned my appointment as of today in a letter to Brenda Cook.

I will let you have copies, in the next few days, of the preparatory work I did.

Mike. 05.02.04.


preparatory work
(The need for thjis kind of information arose at a public meeting of SNPCT PPI forum in October 2005. I referred them to this work but they had no record of it)

Local Public Access Points
Eastern Sector
Southern Norfolk PCT

Local public access points are the places and facilities in relatively isolated small communities where communication with the people in those communities can begin. They are mainly quite obvious facilities but it usually takes some local knowledge, or basic legwork, to identify them. Because of this they are often overlooked.

Amongst their other functions, “...all PPI Forums will:

  • monitor and review the range and operation of services provided by NHS trusts and in the case of Forums set up for PCTs, services provided and commissioned by the PCT....”
  • “obtain the views of patients and their carers about the range and operation of services and report those views to the relevant trust....”
  • “make available to patients and their carers advice and information about services”
And specially, in the case of PCT PPI Forums:
  • “promote, encourage and support the involvement of the public in consultation exercises and processes relating to health policy development locally.....” (my emboldening)
  • “provide information and advice about complaints processes
  • represent the public views on matters that affect their health”. (all from the guidance to all trust chief executives and commissioned services issued by DoH 04.12.03.).

None of these functions can be carried out by holding public meetings which may be 25+ miles away from most small communities (as in the case of the first Southern Norfolk PCT Forum meetings); none from distributing questionnaires, however skilfully designed (although these can contribute marginally); none from hiding behind bureaucratic and structured meetings however informal. a proportion can be carried out by engaging with people on trusts’ premises but that can only be partial. Qualitative research by direct individual or group interview should be the aim.

It is essential to make direct contact with people local to their own communities and at times they are there - and to talk with those people directly. Not to do so will mean that the vast majority of people will be excluded - it will exclude people with physical and sensory disabilities - it will exclude people without reading and writing skills - it will exclude people who are for whatever reason reluctant to participate in public debates - it will exclude people with mental health problems - it will exclude people with learning disabilities - it will exclude people with language differences - it will exclude people with racial, religious and cultural sensitivities - it will exclude people who are at work - it will exclude busy mothers and fathers - it will exclude children - it will exclude many older people; etc etc etc.
These lessons, about engaging with people have been learnt by myriads of organisations, from substance abuse services to learning and skills councils, and individuals through years of experience. It would be a positive and constructive move for CPPIH and the various PPI Forums to,in turn, engage with and listen to such organisations and individuals. Research (for a Beccles voluntary publication) last year told me Norwich and Norfolk Voluntary Services (the FSO) has very little presence or knowledge in or about this sector. Voluntary services from Suffolk have to be relied on.

The following is a fundamental look at some local public access points here in the eastern sector of SNPCT. It is incomplete. I believe this kind of basic exercise is necessary as a first requirement for any rural PCT Forum. There are also some more general facilities which can be used to begin contact and communication. The most obvious of these is local radio. Forum websites can be set up with reasonable ease ( a task for the FSOs?). There is also a relatively new internet facility which, although presently lacking in information, should be invaluable as it develops. This is found at: www.ukvillages.co.uk

The Access Points
(just one example for this document)

Parish Council,
The Old Town Hall,
1 Bridge Street,
NR14 6LZ.
Clerk - Karen Read.

Post Office (opp Fire Station) - public notice boards
Two fish and chip shops, one over the hill from the PO, one on the corner below the Old Town Hall - both with public notices
The Journal (Alan Burrell 01508 521170) - a bi-monthly free community newspaper. Office just below first chip shop.
The Hollies (next to PO) and the Hollies classroom can be used for meetings but disabled access is, as yet, imperfect. Available by contact at the Old Town Hall.
Public notice board outside the Hollies.
Loddon public library (opp the Old Town Hall) - public notices and contacts for local organisations.
GP surgery (back left of church square as you look at the church) - Patient Participation Group Chair, Eddie Chaney 01508 520834.
Jubilee Hall (turn left between Old Town Hall and second chip shop and is 200 yards on the left) available for meetings (01508 528588) and has disabled access but no info about disabled toilets - due for full alterations before Oct 04.
Pubs; The Swan; The Angel; The Kings Head (all central)

© Mike Cox. 10.02.04.



Thank you for our brief conversation today and for your agreement to meet as soon as possible with myself, David, Lorraine and Christine Stevens, Community Empowerment Lead for the Commission for Patient & Public Involvement in Health.

We have now identified that myself, David, Lorraine and Christine are all available at any time on Monday afternoon next, 9th February 2004 and I am hoping to be able to arrange a meeting room at the U.E.A. Sportspark which seems a relatively convenient location for both yourself and David.

If you could advise whether this is a convenient opportunity and can select a time suitable for you I will confirm the arrangements to everyone tomorrow as soon as possible.


Stephen McCormack

FSO Manager 05.02.04.



Hello Mike
I am sorry that you feel the patients forum does not meet all your aims in addressing the inequalities in health care access and provision at Loddon and Beccles.I think we are all trying to find out exactly what the DOH had in mind in setting up PFs, I just hope they are not too disapointed and that patients and public think we are of some help.
I had already resolved to explore the situation at Loddon and Beccles with the PCT and get some answers following your e-mail of ideas for the agenda.Your follow up papers will be a great help with this, as will reps from the other PPIF's as you point out.

I wish you the best of luck for the future and hope you can get the answers you want , and better some action by the authorities to address the problems.

Sincerely David 08.02.04.


Dear Mr Cox,

Thank you for your email to the Disability Rights Commission regarding the discrimination at the Involvement forum.

The Helpline can only provide you with initial advice and information. Anything that we say to you cannot be considered to be a statement of your position in law. This is because we are only able to take initial details
from you as to the matter in question and we are unable to speak to the other party and thus will not have a full picture of the incident that has occurred.

The Disability Rights Commission can assist disabled people with advice and help on the Disability Discrimination Act 1995 (DDA). The DDA provides people with disabilities, protection against discrimination
in the field of employment, service provision and education.

I have made enquires for you and unfortunately in this case as you were a volunteer you would not have been classed as a member of the general public and the organisers of the Forum would not have had any duties under the DDA.

I hope this information will be of help to you.

Should you require any further advice or information please do not hesitate to contact us again.

Please could you quote the following reference number in any communications with the DRC 401759

Kind Regards.

Christina Cox
DRC Helpline Advisor 17.02.04.


example - sent to several organisations:

Patient and Public Involvement Forums promise a great deal for service users and carers and yet, scanning internet sites and discussion networks, it is surprising how little attention they seem to be receiving from service user and carer groups.

Since at least the early 1980s service users and carers have battled to get their voices heard as credible, legitimate and truly independent - free from attempts at interference and influence by professionals and free from attempts to manage, control and direct by corporate interests. PPI Forums then with their statutory identity and powers established by the National Health Service Reform and Health Care Professions Act 2002 and section 11 of the Health and Social Care Act 2001 - and the barrage of DoH rhetoric propounding real independent function and operation (see for example the DoH documents: Involving Patients and Strengthening Accountability and the text found on the DoH and Commission for Patient and Public Involvement in Health websites) - should offer and provide huge benefits for the development of service user and carer independence of thought, voice and action.

There are though, some early concerns that this new concept, in some places, may be going the same way as other Government new initiatives: tax credits; Criminal Records Bureau; and CAFCASS, for instance. The first and most common concern appears to be that the Commission for Patient and Public Involvement in Health, the supposedly independent national body overseeing PPI Forums, is a QUANGO and has itself no accountability to strengthen. I have directly asked them where their lines of accountability lie and have had no response whatever.

More seriously to me in the immediate sense are the local circumstances (rural Norfolk). Firstly, the PPI Forums were supposed to have been operational from 1st December 2003 to replace Community Health Councils which were done away with on that date - and there were several Government statements in 2003 assuring that this would be so. Many of the Forums here (each NHS Trust is required to have one by statute) have only just got off the ground and I am led to believe that there are still some that are, as yet, not operating - this means that there is no viable replacement for Community Health Councils yet.

Secondly, at least one of the other bodies, the Forum Support Organisations here (usually large not-for-profit organisations set up to assist, support and facilitate PPI forums) is controlling, directing and managing the PPI Forum, it seems with the encouragement of the Eastern England CPPIH which contracts it, and has even blatantly entitled its facilitators PPI Managers. This of course is an effective block on true independence and a deterrent to any experienced service users and carers who might be interested in getting involved.

Thirdly, in its recruitment of Forum members, CPPIH seems to have been remarkably unselective and appears to have appointed many of the usual retired self-styled great and good citizen professional volunteers who do this kind of work out of self glorification. This alone will ensure that the - We know what is best for these people - attitudes will prevail and exclude genuine service users and carers.

PPI Forums are probably working more effectively in less insular parts of the country but in the absence of any discussions so far it is impossible to tell. What are the experiences of others - good or bad?


-Unless it is stated otherwise, the views expressed here are apolitical and entirely my own and not representative of any other individual or organisation.


Hello Mike, thanks for your missive re PPI Forums. Care and Health editor, Marcia White, is interested in possibly having a feature article on the subject. Any thoughts about whether you could turn out, say, a 900 word piece on this? It would need to include some comment from outfits like Help the Aged, Patients Association, an ADSS spokesperson.

By all means give me a call - 020 8348 3194.


Mike George 19.02.04.


Letter to Brenda Cook 20.02.04.

Dear Brenda Cook.

Thank you for your letter of 16th February, 2004. I found your response to the discriminationory omissions at the UEA Sportspark on 5th February, 2004 much less than satisfactory and I have made a formal complaint to the CPPIH Chair. The relevant paragraphs of that complaint are:

“I have also attached a copy of a letter from Brenda Cook dated 16th February, which I received yesterday (19.02.04). This letter contains her response to my letter to her of 5th February 2004. The brief response to the disability discrimination is in her paragraph six.

With regard to that sixth paragraph, the Learning and Development Lead who phoned me about my disability statement on the ‘Welcome Day’ return form did comment on the difficulties of separate rooms at the Sportspark but then said he thought that there would be another room available on this occasion (there was) and he assured me he would advise the facilitators of the problem. I told him it would be fine as long as he did this. He said nothing about a loop system but anyway, with the particular problems of single sided deafness in this context, as I have found in similar situations in the past, a loop system would not have helped (and anyway my hearing aid was awaiting repair). I have to add that I have been to conferences (Learning&Skills Council) at the UEA Sportspark in the past and other rooms are not a problem there - so why this particular bit of misinformation?”

With regard to paragraph one of your letter of 16th February, as I said in my original letter, the concern was the secrecy surrounding this compounded by, as I said to you in our phone discussion, positive misinformation on inquiry from different regional commission representatives about the matter. As for your paragraph two, you and the DoH seem to have different interpretations of the position.

In paragraph three you say the “FSO supporting the PPI Forum for Southern Norfolk PCT has taken a more proactive than supportive role.....until the forum felt confident enough to take on this work themselves.” This is wholly inaccurate: In thirty years of professional practice I certainly have at least as much experience of arranging meetings as yourself and far more than the FSO managers and I would

Yours sincerely.

Mike Cox.


to cppih - Hello.

I am preparing articles on PPI. CPPIH claim to now have 4004 PPI members (7 each for 572 Forums) with the aim of doubling that number in the near future. Each of these people will have written authorisation and an identity card with statutory access to children and vulnerable adults. None will be CRB screened. In the light of the Bichard Inquiry, would you liike to comment?

Mike Cox. 21.02.04.


Hello Sarah Tucker.

For the time being I'd rather keep that information to myself. All I'm prepared to say is that there is a current invitation from a national weekly publication (with no guarantee to publish the finished article) and there is no deadline. I am not a commercial journalist and contact is through a correspondent for whom I've written professional articles (about whislteblowing) in the past.

I'm really asking for this information as a member of the public who happens to be an occasional writer and how you respond is interesting in itself.

best wishes.

Mike. 24.02.04.


Hello Mr Bacon.

I am preparing an article on PPI and because of its seriousness I consider that you should have sight of part of that article. This is copied below. Please acknowledge that you have received and understood the import.

Yours sincerely.

Mike Cox. 25.02.04.

-Unless it is stated otherwise, the views expressed here are apolitical and entirely my own and not representative of any other individual or organisation.


“There is a darker side to how the CPPIH has set up PPI Forms. Section 15 of the National Health Service Reform and Health Care Professions Act 2002 and the Patients’ Forums (Functions) Regulations 2003 establish statutory powers for the volunteer members of PPI Forums. Amongst these are entry and inspection of NHS trust premises (with exceptions where privacy and dignity may be disturbed) and providing information and advice to the public.“Over 4600 Forum members have now been appointed, and are preparing to exercise their new powers.” (CPPIH press release 11.02.04.). And the aim is to double this number of volunteers. Each member “...will also have identity cards carrying the logo to enable easy recognition and facilitate access to hospitals, surgeries, clinics and pharmacies they may inspect.” CPPIH press release 11.02.04.).

These appointed volunteers then will all have ready and legitimated access to children and vulnerable adults . None of these volunteers have had to undergo Criminal Records Bureau screening for their appointments. Something I find incredible, and doubly so at the time of the Bichard Inquiry into anomalies in police checks around how Ian Huntley was appointed as school caretaker.

In this area after 01.12.03. the Eastern England CPPIH held what I suppose could be described as induction seminars for appointed PPI Forum members which they called “Welcome Days”. At the first of these that I attended I asked about this apparent anomaly in child and vulnerable adult protection and the reply was that CRB screening wasn’t necessary because visits to NHS premises would only take place with written authority and by more than one Forum member. As far as I can see very little thought appears to have been given to the fact that if there are paedophiles or distraction burglars amongst the 4,600 (and there is no evidence to say that there are) they will be delighted at the unlimited opportunities generously presented to them by the statutory powers and personal warrants. 24.02.04.”


Dear Mike,

Thanks for asking us for a comment. The Commission's response is below. If you have any other questions, please do not hesitate to contact me.



Sarah Tucker
Communications Development Officer
Commission for Patient and Public Involvement in Health
National Centre
120 Edmund Street
B3 2ES
Tel: 0121 222 4546
Fax: 0121 222 4555

'Both the Commission and the Department of Health are clear that the activities of PPI Forums should not compromise the safety, privacy and dignity of patients. Indeed the regulations governing PPI Forums'
activities are clear about this.

The Commission and the Department are currently working together to draw up arrangements which will both enable PPI Forums to carry out their functions effectively and provide appropriate safeguards for patients.

In the meantime, we have issued guidance to Forum members that when they conduct visits they should normally be agreed in advance with hospitals, should not be conducted by a member on his or her own, and identity cards should be prominently worn. PPI Forum members are required by law to act in accordance with the Commission's guidance'. 26.02.04.


Dear Mr Cox

Thank you for your email. I am surprised that CRB checks are not required if the visiting powers of PPI Forum members are as you describe them.

Please do send me your complete article when it is published.

Yours sincerely
Richard Bacon M.P.
Member of Parliament for South Norfolk 26.02.04.


Hello Mike (George, Care & Health).

the article has modulated into two: one of about 1000 words on ppi and the service user and carer involvement movement and a shorter one (not quite complete) on the potential for child and vulnerable adult abuse from the way ppi is being administered with a statement on the situation by CPPIH (my constituency MP is also interested in a copy of the latter).

I'm not sure of their suitability for Care and Health - both are heavily critical of CPPIH and C&H doesn't appear to do polemics. Since an invitation came from you though I thought you should have first shout.

Mike. 27.02.04.



I am preparing an article on this subject and the essence is:
Section 15 of the National Health Service Reform and Health Care Professions Act 2002 and the Patients’ Forums (Functions) Regulations 2003 establish statutory powers for the volunteer members of PPI Forums. Amongst these are entry and inspection of NHS trust premises (with exceptions where privacy and dignity may be disturbed) and providing information and advice to the public.
These appointed volunteers then will all have ready and legitimated access to children and vulnerable adults . None of these volunteers have had to undergo Criminal Records Bureau screening for their appointments. Something I find incredible, and doubly so at the time of the Bichard Inquiry into anomalies in police checks around how Ian Huntley was appointed as school caretaker.

Could an ADSS spokesperson please comment on the record.

Thank you.

Mike Cox. 28.02.04.


Hello Bernard.

Thanks for replying. What I had been hoping to say was something liike:

a spokesperson for a HIV/AIDS organisation said the Government hadn't listened to advice, there were serious problems with the appointment of Forum Support Organisations and the training offered for PPI Forum members was abysmal

I will obviously remove the latter bit and would not use any of it if you are not happy.

There are two articles. The one I am asking your permission for is essentially about disability and service user and carer involvement groups seemingly turning their backs on PPI Forums when the new legislation could offer so much of value to them. This is coupled with a look at how things are going wrong here - delays in PPI Forums becoming operational and there being no viable replacement for CHCs three months after their demise; problems with one Forum Support Organisation hijacking Forum independence; the appointment of volunteers with paternalistic attidudes counter to service user and carer involvement; and problems with training which include at least one example of discrimination by Eastern England CPPIH.

The great shame is that CPPIH appears to be making such an unholy mess of applying a hugely positive and valuable concept - and they don't seem to be accountable.

The best thing I can do is let you have copies of the articles when they are sorted.

Best wishes.

Mike. 29.02.04.



That doesn't sound too bad - please send me the finished articles.

For info the College of Health went into administration just as it was being awarded CPPIH contracts for forum management in partnership with the Council for Ethnic Minority Voluntary Organisations in 33 trusts in London and the South East. This now leaves CEMVO going it alone and I know that there have already been problems with the London Ambulance Service patients forum who are insisting on doing things their way. Not surprising with the former Chief Executive of ACHEW, Malcolm Alexander, in charge of the only London wide patients forum given his track record at Southwark CHC and latterly with ACHEW.

It might be of interest to readers of Positive Nation for us to publish one of your articles, so please do send them to me.

Best wishes
Bernard Forbes 01.03.04.


to norfolk osc - Hello.

Please could you include me in your list for e mail newsletters and have you a list for public meetings and venues for 2004?

Thank you.

Mike Cox. 05.03.04.


Hello Dr Campbell.

Thank you very much for your response which is similar to that of CPPIH. However, further on in my article I point out that no matter what controls and safeguards are imposed on Forums (and those in themselves will run counter to the rhetoric about patient and public independence, freedom of choice and credibility of voice), just the status of being an appointed member of a PPI Forum with statutory powers will provide endless opportunities for exploitation by persons with a leaning towards child or vulnerable adult abuse - that exploitation is going to be outside the formal context of the Forum and outside CPPIH control. Being the holder of an official warrant in the form of a PPI identity card (witha personal photograph) with extend those opportunities for exploitation immensely.

This, perhaps naivety, perhaps complacency, in thinking paedophiles can be safeguarded against by administrative stringency has been a component present in many child abuse disasters over the years. That is why Criminal Records Bureau screening was introduced for all workers with access to children.

CPPIH must screen all its volunteer appointees (not a question of finance - screening for volunteers is free). Yes, the CRB checks will cause further delays and will be politically unpopular but not to do so will be criminally irresponsible.

Mike Cox. 05.03.04.

---Unless it is stated otherwise, the views expressed here are apolitical, entirely my own and not representative of any other individual or organisation.
tel: 01508 548615 mob: 17941 683211


Dear Mike Cox

Many thanks for letting us see your article. You have written about an interesting and sensitive area.

CHI is supportive of the new systems and structures for involvement and I expect that the new Commission for Healthcare Audit and Inspection (which takes over CHI functions on the 1st April 2004) will take a keen interest in the development of PPI Forums. As an inspectorate, we would also subscribe to high ethical standards in the conduct of inspection work. CHAI will also have the role of co-ordinating local inspection work to ensure there is clarity of function between different inspectorates. Also to reduce the burden on inspected bodies. There is also a role for CHAI in looking at childrens' services.

I am unsure what sort of response you are seeking from us - whether you are seeking comment on the article and its content, or whether you are asking CHI to do something about it corporately. If the former, then I need to point out that it is not our role to comment on individual articles such as this. If it is the latter and/or you want to talk to CHI about the work it is doing on child protection, then you could contact Maxine Nunn who has an overview of this work at CHI. She can be contacted on 020 7448 9594.

I hope this helps, even if only a little bit!

Yours sincerely

David Gilbert 05.03.04.


HI, I was appointed to a PPI Forum. Previously I was a participant in the draft consultation for the legislation of PPI'S. I was very concerned over the 'cronies' being appointed. I pointed this out in the draft consultation. I did the 1st and 2nd training sessions and went to my first meeting of the forum. In essence, the other members had all met each other and the Chair was voted in because she hadn't been a Chair before. I was talked over, ignored etc.The following morning I sent my resignation to the Chair of the Commision (4 pages of reasons) One being that the 'members' did not have a clue about their legal obligations. After the Chairs appoinment, she didn't have a clue as to what to do let alone what anyone else should do. The only serious topic discussed was raising the milage to 50p per mile. Another member wanted at least £25.00p per hour for childcare.
I have since found out some of the members are members of a health pressure group, whom the hospital wouldn't touch with a barge pole. When I have mentioned the PPI to Doctors etc, they refer to the Forum as a bunch of A***holes.
I would be interested in your progress. Have you looked at the Chair of the Commissions 'speach' in the Guardian? It is titled Pilot Fright. Let me know if you havn't seen it and I'll post the link.
Best regards

Steve 06.03.04.


Hello Steve.

Thanks for your mail. I pulled out after the final straw of being a victim of CPPIH disability discrimination. My formal complaint is at its second stage and being looked at by Laura McMurtie. I'm in the process of finalising two articles about the debacle- one on the shame that a development that could be so valuable to service user and carer involvement is being wrecked by CPPIH ineptitude - and one on the absence of child and vulnerable adult protection measures in the recruitment of PPI members.

I'd love to get some measure of how many other original volunteers have pulled out already and their reasons for doing so. Where did you read my appeal and where are you? If there are enough of us a campaign group might be feasible.

Mike. 06.03.04.


to FSO - Hello Stephen.

I still haven't received payment of my expenses.

Mike. 06.03.04.


Hello Sharon Grant.

I have attached an article of mine entitled PPI = Patient and Public Impediment. Do you wish to comment?


Mike Cox. 08.03.04.

---Unless it is stated otherwise, the views expressed here are apolitical, entirely my own and not representative of any other individual or organisation.


Hi Mike, soory for the large print; I'm pushed for time. The following is the article I refered to. My point is about the same old cronies being appointed. See, para 9, which makes the recruitment hypercritical. I'll
answer your questions soon.

Pilot fright

The government wants people to shape their own local health services, but getting the public interested is proving difficult

Margaret Kubicek
Wednesday January 15, 2003
The Guardian

The new commission for patient and public involvement in health starts work this month, aiming to put people "at the heart of decision making in local NHS services". All agree that the intention is laudable, but is it
achievable? The commission is to oversee a huge network of patients' forums - one for each of the 600 or so NHS trusts and primary care trusts in England - to give service users a direct voice in the delivery of healthcare and independent support in filing formal complaints when things go wrong. With more than 6,000 voluntary members needed to sit on the patient forums, the scale of the task is unprecedented.

The forums are part of the government's structure to replace English community health councils (CHCs), which also sees local authorities taking on a formal scrutiny role of healthcare delivery in their areas. But the
experience of pilot schemes suggests the forums face enormous challenges in stimulating interest among the public to become members - much more so among so-called hard-to-reach groups, such as minority ethnic or socially deprived communities, for which the commission has been given a particular brief.

When Doncaster CHC moved last spring to set up a shadow patients' forum, it pulled out all the stops in its attempts to recruit members. "We put out 1,500 flyers, ran adverts on local radio, in the local press and hosted explanatory events, as well as getting word out through voluntary organisations," says the CHC's deputy chief officer, Lorraine Lawson. Yet the campaign had a response rate of less than 2%.

Doncaster cobbled together a pilot forum from the 19 people who put themselves forward and, insists Lawson, what the group lacks in demographic diversity it makes up for in enthusiasm. "We haven't got to the
hard-to-reach groups and we haven't got the geographical spread - time and resources are needed to achieve that," she says.

Lawson and others involved in pilots agree that community "outreach" is the only way to achieve participation among traditionally excluded groups. But outreach requires staff to hit the streets and, therefore, is costly.

Another pilot, in Luton, where 25% of the population is from minority ethnic groups, began by advertising for forum members using traditional methods. "We had three or four people turn up," says project director Tony Tester. "Since then, we've employed two part-time community empowerment officers and we're now getting 30 people coming along to meetings - 10 each from Asian and African-Caribbean groups."

Tester fears that resource constraints will squeeze out such community outreach and support by the new forums. "Support for patients' forums and the independent complaints advocacy service has to be done by statute, but not necessarily community support," he says. "However, that's where the biggest payback will be."

The chairwoman of the new national commission is Sharon Grant, a former local councillor and university lecturer with a strong background in equality and diversity work and empowerment of excluded groups. She admits that recruiting forum members from hard-to-reach groups will be one of the commission's biggest challenges - and priorities. "If we just continue to use the same people from the same social groupings that are usually involved in these kinds of things, we're not going to succeed," Grant says. "We need to inject new blood if it's going to work."

What proves successful in winning involvement will vary across the country. In one area of Hertfordshire, GPs sent letters to their patients promoting participation in forums. The approach netted 100 potential members across six GP surgeries. "That was largely a middle-class area," Tester points out. "I'm not sure it would work somewhere like Luton."

What proves possible in terms of generating involvement will be dictated to a great extent by available resources - still unspecified. According to the Association of Community Health Councils (ACHC), which admittedly may have a point to prove, the forums will need a total of more than 1,600 staff at an annual cost of £53m to meet the aims the government has set them.

Throughout last autumn, the Department of Health said funding for the new system would be announced shortly. The delays have fuelled suspicion that the budget for the commission will be tight. Similarly, lack of clarity over how the new system will be structured - and the lack of a timetable for the transition - have bred an atmosphere of confusion and resentment among the 700 CHC staff unsure whether their jobs will end in March or September.

The state of limbo has been further complicated by moves by some trusts - lacking guidelines from above - to go ahead and set up patients' forums themselves. "I think it's isolated, but I would say that's not appropriate," says Paul Streets, chairman of the transition advisory board, the national committee that advised government over the past year on implementing patient and public involvement. "These are supposed to be independent bodies and [trust-inspired bodies] are not likely to be the kinds of forums the
commission would want to support."

Officially, the health department has said decisions regarding structures, timetables and staffing will be down to the commission. Its 15 members are due to hold their first meeting at the end of this month. However, Whitehall has already laid down parameters. As Peter Walsh, until recently the ACHC director, says: "The Department of Health has indicated that as few as 28 local offices will be provided, meaning all the primary care trust patients' forums in a strategic health area will share the same staff team and office space. We feel that they're going for mass amalgamation of staff to save on resources, but it wouldn't be what people are expecting by virtue of the legislation."

Walsh admits, however, that the delays could indicate that the government is taking heed of critics' concerns. Grant shares this view, stressing that the commission and the network of forums will take the best part of a year to get up and running to full potential. The end result, she believes, will be far better for the debates over resourcing that have been taking place and she acknowledges the hand of CHCs in shaping the new system. "If it hadn't been for the fight they put up," Grant says, "we would not have had this commission."

A chair at the top table

Sharon Grant's background in north London, saw her clash with David Lammy - the junior health minister to whom she now reports. But she insists their working relationship is good.

Grant was defeated by New Labour loyalist Lammy in the race for the Labour nomination for the Tottenham parliamentary seat that had been held by her high-profile, leftwing husband, Bernie Grant, until his death in 2000. Lammy did not hold the portfolio when Sharon Grant went for the position of chair of the new commission for patient and public involvement.

"Certainly, at the beginning, it needs to be a relationship of practical partnership," says Grant, no doubt mindful of continuing budget negotiations. "But it is the very raison d'être of this body that we are
independent, and our view will be unfettered by any departmental considerations. Anybody who thinks I'm a safe or soft appointment doesn't know me very well."

Grant, who was a lecturer in social policy but left university life in 1987 to run her husband's parliamentary office, founded the Bernie Grant Trust following her husband's death, to foster leadership in black and minority communities. She has also led the Bernie Grant Centre project, a £12m arts and cultural centre in Tottenham to champion black and minority ethnic arts. And she is keen to tap into existing community action programmes in order to meet the government's requirement that patients' forums involve traditionally excluded groups.

"There is a large movement for neighbourhood renewal in this country today," she says. "We need to make sure we involve those groups of people and we need to find new ways of working. Not everyone wants to come and sit on a forum for two years."

Grant is less forthcoming about how she believes the commission and its network of forums should be structured. Decisions, she says, must be taken by the full board of commissioners. Similarly, it should be up to the board as a whole to decide how the transition from community health councils (CHCs) to forums is managed.

While she can understand the anger of CHC staff who have not been guaranteed jobs, she is adamant there should be no automatic transfers. "I fully accept there are many people within the community health council movement who should be involved in the new system," says Grant. "But they are not our employees and understandably we need to reserve the right, as a new organisation, to draw up job descriptions fit for this new organisation."


Hello Mr Coath.

No organisation. I'm an interested member of the public and a heath service user.

The OSC may be interested in two articles I have just completed. One, about PPI and child and vulnerable adult protection, is awaiting publication in Care and Health magazine. The other, in which a couple of disability groups have expressed interest, is attached for your information. There is also a small biog. at the end of this which tells you where I am coming from.

As a member of the public I will be keeping a watching brief on developments.

Best wishes.

Mike Cox.
(Mike Stallard is a pen name). 11.03.04.


Hi Mike, sorry for the large print last time. Now to answer your questions.
I saw your article on Dis Now site, I live in the South-west. As regards settting up a group of ex-forum members; it may be a good idea to set one up on Yahoo groups. However, if you are pursuing a claim against the CPPIH, it may be that anything that you post on the net etc may be detremental to your case. I was suggest you see who ever is dealing with your case.
One thing that is becoming clear down here is that the PCT's etc are asking the public for their views. Although I understood that the Forums are suppose to be doing that. It also seems that the Forums down here don't exist, I've neither heard or seen any reference to them. Except a poster telling people if they have a complaint, to contact the local forum. There are no contact details on the poster. This is odd, since complaints are dealt with by ICAS, or PALS. All the forums can do is to refer them onto these.
I have received a letter from the area manager asking me to reconsider my resignation, which I did(All of two seconds) and didn't bother to reply. I also received a letter 10 days later acknowledging my resignation and asking for feed back on my experiences. So it appears that 'things' are not going well for them, and I think there have been a lot of resignations. Finally, I think this is going to be raised in the press by the medical fraternity and those politicians whom were oposed to the forums. The CPPIH is trying to get more funding from the Government, but I don't think that will happen.
Best regards
Steve 12.03.04.


Hello Steve.

Didn't get large print but no problem if I had. South West probably has similar problems of service access as we do here - people in large rural areas being remote from centres of delivery which are all in urban concentrations. I once worked in north Devon and could contrast that by spending some time in Plymouth too.

I sense, from my brief contact with their workings, that the PCTs here are more ready than hospital trusts to open their doors fully to real service user and carer involvement if CPPIH had gone down that line as they should have done. But there seem to be hidden agendas influencing the way CPPIH is working. I have a completed article awaiting publication in Care and Health magazine which looks at child and vulnerable adult protection in terms of the lack of CPPIH safeguards. Contact with CPPIH for their comments reveals a policy of repressing PPI Forum activity and subjecting it to close professional supervision because of issues around protection. So all their talk of PPI independence and consumer authority is pure spin.

I am also finalising a second article which deals with the barriers to real service user and carer involvement which CPPIH have erected (and the anomalies here in Norfolk). I would love to have service user and PPI Forum member comment for this (because that is far more important than anything the institutions might say but quite difficult to get). Could I possibly quote you on the record, either under your name or anonymously?

As for my complaint, its just that - volunteers aren't covered by the DD Act: another pretty scandalous issue which has been aired nationally more than once but which the Government refused to do anything about.

I've also made contact with the overview and scrutiny committee for Norfolk and hope to be keeping a watching brief from outside the Forums. I also have embryo thoughts about a website but I'd really like to see a joint campaign on proper service user and carer involvement by the existing disability and service user and carer groups and I think my next move is going to be speaking to as many as possible. Shaping our Lives with its Southampton uni contacts sounds like a good place to start but I would welcome suggestions. Perhaps a campaign for an elected CPPIH?

Best wishes.

Mike. 13.03.04.


to cppih - Hello again.

For info: my article on PPI Forums and child/vulnerable adult protection awaiting publication in Care and Health magazine.

Now finalising an article on how CPPIH is failing service user and carer involvement and getting some interesting indications from service users in different parts of the country on resignations from the Forums. Can you please let me have the official figures on how many resignations from PPI Forums there have been altogether since 01.12.03.

Thank you.

Mike Cox. 15.03.04.


Dear Brenda Cook.

Public Information.

In my letter to you of 20.02.04, I asked you for the following public information:

  • Contact details of the PPI Forums for:
    • Southern Norfolk PCT;
    • James Paget Healthcare Trust;
    • Waveney PCT;
    • Norfolk Mental Health NHS Trust;
    • Norfolk and Norwich University Hospital Trust;
  • Contact details for:
    • Norfolk Overview and Scrutiny Committee;
    • Suffolk Overview and Scrutiny Committee;
  • Times and venues of meetings for all of the above.

I am now in touch with CHI, the Norfolk Overview and Scrutiny Committee and have contact information for Suffolk. I have already completed two articles about CPPIH shortcomings, one awaiting publication in Care and Health magazine and one with a disability organisation. CHI has also had sight of the first.

However, I still do not have any information about the PPI forums. I am fully aware that the information should be publically available but, nearly four months after the PPI forums were supposed to have been operational, I have seen nothing to even tell of their existence, either in primary care or hospital let alone in the media. My experience here is reflected too by contacts in the South West. Your silence in itself speaks loudly.

Could you please let me have the information I have requested. If I don’t hear from you in the next week I will take that as a refusal.

Yours sincerely.

Mike Cox. 18.03.04.


Thanks for letting me know - and sorry not to get back to you. From our perspective it is that we want people to be involved in planning diabetes services so PPIFs not our focus.

Karen Thomson
User Involvement Manager
Diabetes UK 18.03.04.



I have attached an article of mine on how PPI Forums are failing. This has been given to the disability organisations Shaping our Lives, Disability Now and the Norfolk Disability Coalition. I offer it to you for your information. Mike Stallard is a pen name.

I have a second article on how PPI Forums could present risks to children and vulnerable adults because of CPPIH's decision not to CRB screen its appointed members. This is awaiting publication in Care and Health magazine. I did alert my constituency MP to this back in February but he was merely dismissive, apparently because he would not believe CPPIH would fail to screen their appointees! Hence the information to the Health Committee.

I am a National Health service user who has had a special interest in service user and carer involvement and advocacy for the past 30+ years, particularly through professional involvement in the field of mental health. Since the late 1990s I have been a proponent of, and have made a special study of the developments for patient centrality and involvement in the NHS. In November 2003 I was appointed as one of the volunteer PPI Forum members for a PCT trust in Norfolk. By February this year I was seriously dismayed by CPPIH’s prevarication and misuse of its own stated values. Being a victim of disability discrimination by CPPIH was the last straw and I withdrew.

I live at: The Lilting House, Beccles Road, Thurlton, Norfolk, NR14 6AJ.


Mike Cox. 19.03.04.


Hi Mike,
thanks for your last 'E'. I agree with you there are things happening that do not make sense. ie, refering the public with complaints to PPI forums? Membership/recruitment? It may be that the 1st wave of recruitment was to appease the politicians. There is a 2nd recruiting drive to take place from April onwards. perhaps they are going to get rid of the 'stereo types' that are associated with these types of organisations from the 1st wave? Personally I don't think I have heard the last from them. I think they will approach me again later in the year to re-join them. They did want feed-back of my experiences as a short lived forum member. Perhaps they have taken note of the complaints I have raised? So for the moment, I envisage a sit and wait and see
situation. Therefore at the moment I will pass on being quoted. I don't know if you know about the Disabled Peoples Parliament. I received an invitation to join them, but can't at this moment in time due to too many commitments. However, it maybe that the forums may be of use to you. Anyway, take a look:

Overall, I think gathering as much info as possible is the way forwards, but will take time.
Let me know of any progress. Or any help I can give. Finally, when I participated in the review of the DDA 1998, I remember that Volunteers disability rights is to be included as law. I will check with the DRC if and when it is going to happen. The other point that comes to mind is that recruitment and the 1st two training sessions were directly aimed at the inclusion of 'diverse' groups of the 'community' and the recruitment was uppose to reflect this. I was invited to apply for the forums after participating in the draft consultation document on the PPI legislation; by the Dept of Health. I was the only 'diverse' element of the forum I joined.
Take care

Steve 19.03.04.


Dear Mr Cox

Thank you for your e-mail of 8 March to Sharon Grant, Chair of the Commission, via our Board meetings mailbox, seeking comments on the article you have prepared. The Chair has asked me to respond on her behalf.

I am aware that you have raised a formal complaint about your personal experiences as a Forum member in the East of England. The Commission will be responding separately on those issues in line with its complaints procedure.

I have the following comments on the article:

P2 bullet 1: It is simply not correct to state that “none…are functioning”. All 572 Forums, covering the whole of England, are functioning, meeting, engaging with the NHS and developing work plans.

Bullet 2: The Commission’s position here is clear, and it reflects the wording of Statutory Instrument 2003 2123, para 8, subsection 2: “Any staff provided (ie FSOs – my parenthesis) shall be under the direction of the members.” The job titles of individual FSO officers do not reflect any diversion from this approach.

P3, continuation of bullet 4: I am sorry that you have not received a reply on your question about accountability. We are committed to openness and endeavour to reply to all enquiries within 10 working days. The accountability of CPPIH is described in Schedule 6 of the NHS Reform and Health Care Professions Act 2002. CPPIH is a non-departmental public body accountable to the Secretary of State for Health. The Commission also copies its accounts to the Comptroller and Auditor General, who in turn reports to Parliament.

P3, penultimate para: You have acknowledged that your suggested reasons for the fact that CRB checks have not been carried out on members are “speculative”. They are also incorrect. We have been in discussion with the Department of Health on this matter since early last year, but we have followed the Government’s consistent line that CRB checks are not necessary for the type of contact that PPIF members will be having with children and vulnerable adults, ie infrequent and staff-supervised. Our Reference Guide also stresses that visits should not be conducted by individuals alone. There have, however, been many representations to the Department of Health and the Commission on this issue and we are jointly considering a response to those queries.

P3, penultimate para, penultimate sentence: Approximately 10% of those who applied were not selected to be PPI Forum members.

I hope you find these comments useful.

Yours sincerely

Policy Executive


Hello Mr Hilton.

Thank you for your letter. It is appreciated and it is refreshing to receive an unequivocal communication from CPPIH.

With regard to your comments:

- meeting, engaging with the NHS and developing work plans - are preparatory activities the bulk of which should have taken place prior to 01.12.04. along with the necessary training - ready to replace CHCs. By definition (in the Act and Regulations), functioning is engaging with patients and the public and beginning to represent their needs to trusts. Interestingly, over the past three days I have visited two hospitals and two primary care centres looking for information on PPI Forums - there is none anywhere. Staff look blank when asked. At a main hospital (which is applying for foundation status) there is a special notice board displayed in the foyer - boldly entitled Community Health Council and detailing what it is and where it can be consulted!! When I asked Eastern England CPPIH for public information about local PPI Trusts, after a long hiatus and being prompted they told me to contact respective FSOs for the information giving me a Lowestoft address for one. On visiting that Lowestoft address (of the same organisation) I was told the FSO had moved to Gt Yarmouth. No one knew who to contact and all that they could tell me was that the previous FSO manager had resigned and that although there is someone managing the service, she is doing so from Grimsby and it is not known if the Gt Yarmouth office is open. On visiting that new office during the middle of the day today all the receptionist at the building could do was confirm there is no one there, that the person is indeed in Grimsby. It is not known when the office might be open and all he could offer me is the organisation's Lowestoft phone number!! I think the term shambles is merited.

Thank you for the SI quote which I had missed. Now why couldn't Eastern England CPPIH have been as straightforward instead of being devious and leading me a dance? It could have nipped this particular issue in the bud before it blew up. However, the activities of the particular FSO, from the evidence of my own eyes, experience and records were certainly in breach of that SI. Whether or not it continues I have no means of telling - I can't access the public information enabling me to attend PPI meetings as a member of the public. Of course the titles of FSO officers reflect their intentions - and shout loudly to service users and carers what those intentions are. I would have thought, bearing in mind the credentials of the Commission members there would have been a great deal more awareness and sensitivity about service users and carers, especially their experiences of corporate interference.

Thank you, at last, for the information on accountability. I am in touch with the Select Committee on Health. I also sent this to CPPIH on 13.03.04: - For info: my article on PPI Forums and child/vulnerable adult protection awaiting publication in Care and Health magazine. Now finalising an article on how CPPIH is failing service user and carer involvement and getting some interesting indications from service users in different parts of the country on resignations from the Forums. Can you please let me have the official figures on how many resignations from PPI Forums there have been altogether since 01.12. 03. - I have already interpreted CPPIH silence as a refusal in a couple of internet forums but do I now have hope of a response?

Yes I know. For the Care and Health article I have had good quotes from CPPIH and the Centre for Public Scrutiny on how professional supervision during inspection visits will provide safeguards. I have though, gone on to say from Doh and CPPIH documentation: - PPI Forums for primary care trusts in particular have other statutory functions which include the requirement to: “seek the views of patients receiving services provided or arranged by the trust.” If we look at how this function is intended to develop, we get: Forums will “Involve people who are often ignored or overlooked.... (there should be) Influence on health as well as health services - the environment, housing, unemployment... Forums can look at these wider public health issues and influence how the causes of these inequalities are tackled.” A laudable policy. But to put this into effect, as CPPIH training sessions have emphasised, means reaching out to patients - engaging community groups and talking to people in the street. And, knocking on doors? How are these kinds of activities going to be supervised by professionals? - and I have added a quote from Sir William Utting's report on safeguards for children: - Persistent paedophiles ...appear in various guises: as proprietors, heads of institutions, professional or ancillary workers, volunteers or helpers. People who wish to exploit children, particularly career abusers, will seek out weak points in any system, wherever they occur..- In my opinion, CPPIH are inviting disaster if they continue to fail to carry out CRB screening. If there are paedophiles and distraction burglars amongst the 4600, they will easily find means aplenty, outside the formal context of - infrequent and staff supervised, - to misapply their PPI appointee status and identity to their perverse advantage.

And yes, thank you once again, I did find your comments useful.


Mike Cox. 24.03.04.


Hello Brenda Cook.

Thank you for your letter.

I thought you should know however, that one of your FSOs is no longer at the address you think it is. Rather than write the saga out again I have copied my reply to a letter from Steve Hilton. This is below. The relevant bit is in the first large paragraph.


Mike Cox. 25.03.04.


Dear Mike,

Thanks for your courteous e-mail of yesterday.

I am the Policy Executive here at the Commission's National Centre and part of my responsibility is to manage enquiries. If your query is therefore on a "national" issue, I or my colleagues would be happy to help. If your query is about operational issues or concerns in your area, the East of England office is the contact point.

Coming back on some of your points:

We fully acknowledge that Forum activity is variable, and clearly your local experience demonstrates that. We now have all 572 Forums active, but their time since activation and level of experience of members does vary. All are doing the preparatory work I mentioned in my letter. I also believe that if called upon by demand-led issues like consultations and major service changes, with our support they will be able to fulfil their responsibilities. Given more time and continuing training and guidance from us, they will be fully functioning.

I am sure the East of England Office will pick up if they have not already the issue about FSOs allegedly "managing" members. Performance management of FSOs is one of the roles of the Regional Centres and I am sure they would be interested in any evidence you have. FSOs, as their title suggests, are there to support members, not to direct them in any way. I see their role as being similar to an LEA clerk on a school governing body - providing expert advice (or finding out information) as well as admin support.

I hadn't seen your e-mail of 13 March, but I will endeavour to get those figures on resignations for you as soon as possible (by next week).

We are by no means underestimating the seriousness of the CRB issue, and we have had representations from the NHS in particular along similar lines to your Utting quote. I perhaps did not stress the urgency the Commission and the DH are applying to the CRB issue in my letter to you.

Regards STEVE 25.03.04.


Hello Mr Hilton.

I appreciate the information about your role. I will certainly contact you in future about any national issues. I don't think dialogue with Eastern England CPPIH is much use (although I have sent them copies of our correspondence and the revised article) - as indicated, my experience there is of evasion and equivocation.

Revised article attached for your information.

Care and Health are asking what your timetable for the urgent talks with DH is. Do you have one?


Mike Cox. 27.03.04.


> From: "Steve Hilton" <steve.hilton@cppih.org>
> Date: Mon, 29 Mar 2004 10:56:29 +0100
> To: "Mike Cox" <micox@btopenworld.com>
> Subject: RE: revised article
> Dear Mr Cox,
> In answer to your question, we have had our first meeting with the NHS > and the DH about CRB checks, but there is no timetable. I stressed last > time that the priority was "urgent".
> I wish to notify you formally that if you quote me selectively as you have done to give the wrong impression, we will take steps to complain. You have not at any point said that you would quote me in your article.
> If you want to quote me, I am willing for you to do so, provided you add the last three sentences of the paragraph from which you have quoted,
> ie:
> "All (Forums) are doing the preparatory work I mentioned in my letter. I also believe that if called upon by demand-led issues like consultations and major service changes, with our support they will be able to fulfil
> their responsibilities. Given more time and continuing training and guidance from us, they will be fully functioning."
> Yours sincerely
> STEVE HILTON 30.03.04.


Hello Mr Hilton.

Firstly I have to say your correspondence with me is in response to my sending CPPIH the draft article for comment. The understanding in that is that any such comment is on the record. Additionally, as per CPPIH's own stated values, this is not secret information.

The part of your response I have quoted is not to give the wrong impression. It is your acknowledgement (of the local details I gave you) that some things are going wrong but which is also qualified by you saying that things are variable. That is only common sense. What the parameters of that variablity are is currently, without information and evidence, unknown.

My own reading of the rest of your paragraph you are asking me to quote is that, disappointingly, it leans towards the kind of propaganda I have been hearing from the regional CPPIH. What you say about Forums being able to react to demand-led issues is not accurate. There have been demand-led issues here, for example: problems of access for people living in a rural area and proposed new out-of-hours GP arrangements highlighted in a PCT meeting - just two examples of many. The Forum I was involved in pushed these aside with the encouragement of the regional CPPIH and the FSO.

This is compounded. As a member of the public I am being denied by the regional CPPIH, public information which would enable me to check on the current status of activities - again, in breach of CPPIH's stated values of openness and transparency! I am recording the events as they occur for the preparation of a further article.

I will state that my motivation for writing on these subjects is to try to raise consciousness of the fact that hugely valuable changes in healthcare are being wrecked by CPPIH ineptitude, and that it may, even this early on, take years to reverse the damage done - in appointing entirely the wrong people and in training inadequacies, for example.

That is my personal response to your request. I should also say the article has now been accepted for publication and I'm sure it is too late to make further changes. What I have done is copied this correspondence to the editor concerned for their information. If there is a decision to add your three sentences I am happy for that to be done along with my own statement that it is not accurate.


Mike Cox. 30.03.04.

---Unless it is stated otherwise, the views expressed here are apolitical, entirely my own and not representative of any other individual or organisation.
tel: 01508 548615 mob: 07941 683211


Hello Marcia.

Revised last paragraph:

Steve Hilton, Policy Executive at CPPIH now tells me there are discussions taking place between CPPIH and the Department of Health and although there is no timetable, he stresses these are “urgent”. Just as well considering there is another aspect: “Under the Protection of Children Act 1999 and the Criminal Justice and Court Services Act 2000, it is an offence for any organisation to offer employment (this includes volunteers - my parenthesis) that involves regular contact with young people under the age of 18 to anyone who has been convicted of certain specified offences, or included on lists of people considered unsuitable for such work held by the Department for Education and Employment and the Department of Health.”7 Are CPPIH courting prosecution by not screening their volunteer appointees?

Photo attached.


Mike Cox. 01.04.05.



I have attached the final version of my article on PPI Forums. Please pass this to the Health Committee and please acknowledge you have done so. It was to have been published in Community Care magazine in the next couple of weeks but their conditions included taking over the copyright which would have precluded this kind of sharing - the object of the article.


Mike Cox. 08.04.04.

---Unless it is stated otherwise, the views expressed here are apolitical, entirely my own and not representative of any other individual or organisation.
tel: 01508 548615 mob: 07941 683211


Dear Mr Cox

Thank you for your article. Diversity and the patient experience are key elements of all our work streams within the Healthcare Commission and I hope that the Commission will prove to you, in time, its usefulness to health.

I have carefully read your article and would like your permission to pass it on to colleagues, both within the Healthcare Commission and external. It is a very powerful article.

Kind regards

Lea Pickerill
Helpline Manager
Healthcare Commission
Finsbury Tower
103-105 Bunhill Row
London EC1Y 8TG, T: 020 7448 9413, F: 020 7448 9292


Hello Ms. Winterton.

I am mailing you in your capacity as Health Minister responsible for PPI. I am not a constituent.

I have attached the final version of my article on PPI Forums for your information. Copies have been sent to, amongst others, The Health Committe and the Healthcare Commission. It was to have been published in Community Care magazine in the next couple of weeks but their conditions included taking over the copyright which would have precluded this kind of sharing - the object of the article. With my permission I understand Community Care are quoting from it in a news item this week.


Mike Cox. 08.04.04.

---Unless it is stated otherwise, the views expressed here are apolitical, entirely my own and not representative of any other individual or organisation.
tel: 01508 548615 mob: 07941 683211


Hello Lea Pickerell.

Yes of course you can share it, please be my guest - that's the purpose of it. With my permission I understand Community Care are including aspects of it in a news item this week.

Copies have already gone to CPPIH (Steve Hilton); Eastern England CPPIH (Brenda Cook); the Select Committee on Health; and Rosie Winterton.


Mike Cox. 08.04.04.


Dear Mr Cox,
Request for Public Information
Thank you for your recent letter asking for contact information about a number of Patient and Public Involvement Forums (PPI Forums) within the east of England. PPI Forums can be contacted via the Forum Support Organisations which provide them with administrative and other support. The contact details for the forums that you are interested in are as follows:
• Southern Norfolk PCT
• Norfolk and Norwich University NHS Trust
• Norfolk Mental Health Trust
are supported by Norfolk and Norwich Voluntary Services Norwich Community Hospital
Bowthorpe Road, Norwich, NR2 3TU, Tel: 01603 774321.
• Waveney PCT
• James Paget Healthcare NHS Trust
are supported by the Shaw Trust 15 Milton Road East, Lowestoft, Suffolk, NR32 I NT, Tel:
01522 551749.
The forums are currently developing their work programmes and within these they will be identifying the times of and venues for their meetings. I am therefore unable to provide you with this information, and suggest that you contact the forum support organisations directly for it.
Yours sincerely
Brenda Cook
Regional Manager



to NVS FSO & Shaw FSO - Hello.

I have been in touch with eastern England CPPIH to request information about specific PPI Forum activities. The information I am asking for is times and venues of Forum meetings and activities. CPPIH's response has been to direct me to yourselves as providers of this information (CPPIH letter to me attached).

Could you please provide me with the information requested concerning the Forum(s) from my list which you are assisting. My purpose is, as a service user and member of the public, to monitor, record and report on the progress and development of PPI activities and performance.


Mike Cox.


Dear Laura McMurtrie.

Formal Complaint

Thank you for your letter of 5th April, 2004. The response is appreciated but we do have a divergence of opinion in that however inadvertent the CPPIH actions were, what occurred was still, in effect, discrimination.

Having now had the chance to stand back a little I must make a further observation:

  • Right at the outset I had recorded the special needs on the training event entry form. For CPPIH to have then phoned me in the first place to say they could not see how they could accommodate the special needs was to discriminate against a person with those special needs - to virtually say ‘Tough, but you’re excluded’. I have to add though that I was equally wrong to have colluded with this by even beginning to try to compromise. I must also remark that further research has pointed to the likelihood of the “regrettable” events being the product of shortcuts in training strategies arising out of inadequate government funding; putting yourselves in an almost impossible position. You have my permission to use this matter as a case study in pressing for better funding.

Rounding things off I just have to make comment on four parts of your letter:

  • para 4: I must repeat I said small group work would present no difficulty provided all the groups were not in one room with the concomitant background babble.
  • para 5: It is always embarrassing to draw attention to one’s disability in public and people with special needs should not have to do this. Personal privacy is usually protected by preparatory arrangements from the advice on the entry form or from previous feedback.
  • para 6: the tone and content Brenda Cook’s apology came across to me as terse and contrived at worst and grudging at best. That tone has been reflected (apart from a positive phone conversation I had with Ms Cook early on) in most communications with East of England CPPIH - what information can be squeezed out is usually equivocal and PPI information is still being suppressed.
  • para 6: the meeting you refer to (not a “face to face” meeting with Brenda Cook but a CPPIH representative) had been arranged immediately before going into the UEA event and the arrangement was welcomed by me as an opportunity to try to address a whole spectrum of problems thrown up by obvious CPPIH and FSO mismanagement (you may have seen just a small sample of those problems in a copy of an article of mine). I did not decline the opportunity. It was the discriminatory experience at the UEA and my resignation consequent to the discrimination which stopped the meeting. As Brenda Cook says in her letter “...I received your resignation before the meeting was able to take place.”

However, as I said, I appreciate your letter. Thank you for your positive tone and the most important assurance that you have put measures in place to avoid similar occurrences . I will be continuing to follow my interest in PPI and reporting on progress or lack of it as a service user and member of the public. This particular matter though, for me, is at an end.

Yours sincerely.

Mike Cox. 11.04.04.


to Shaw Trust Head Office - Hello.

I am told by the east of England Commission for Patient and Public Involvement in Health (see attached letter) that The Shaw Trust, Lowestoft is the Forum Support Organisation for two PPI Forums I am trying to contact.

However, in visit to the Shaw Trust office in Lowestoft I was told that not only had the FSO moved to Gt Yarmouth but that the person administering the FSO was doing so from Grimsby (but you don't appear to have told CPPIH this). I also visited the Gt Yarmouth office but it was closed up and the person on reception for the building looked at me with a resigned expression and was unable to tell me anything or give me a contact phone number other than the Lowestoft office of the Shaw Trust!

I was initially in touch with east of England CPPIH to request information about specific PPI Forum activities. The information I am asking for is times and venues of Forum meetings and activities. CPPIH's response has been to direct me to yourselves as providers of this information (see attached letter).

Could you please provide me with the information requested concerning the Forum(s) from my list which the Shaw Trust is assisting. My purpose is, as a service user and member of the public, to monitor, record and report on the progress and development of PPI activities and performance.


Mike Cox.



The above trust (Norfolk and Waveney Mental Health Partnership NHS Trust) is reported in a local newspaper as as new organisation but I can find no information about it on your website or elsewhere.

Please clarify.


Mike Cox. 15.04.04.


Hello Brenda Cook.

It seems the above new organisation came into being on 1st April 2004. Can you please let me know what the PPI arrangements are and who to contact.

Thank you.

Mike Cox. 15.04.04.


Thank you for your e-mail which Jenny has passed to me.

Norfolk and Waveney Mental Health Partnership NHS Trust is one of two new Mental Health Partnership Trusts in Norfolk, Suffolk and Cambridgeshire which came into existence on 1 April 2004. The new Trust, covering Norfolk and Waveney, has replaced the Norfolk Mental Health NHS Trust which operated in that area until 31 March. The Local Health Partnerships Trust, which covered Suffolk, became Suffolk Mental Health Partnership NHS Trust on 1 April.

I have attached a paper that went to our Public Board meeting in January for your information which clarifies the changes.

I have asked our web team to ensure that these names are changed on our website.

Emma Greenfield
Corporate Affairs Officer
Norfolk, Suffolk and Cambridgeshire Strategic Health Authority
T: 01223 597615
F: 01223 597686 15.04.04.


Hello Brenda Cook.

Apologies for my mistake. The local press report gave the impression the Norfolk and Waveney Mental Health Partnerships NHS Trust was a brand new organisation in addition to the Norfolk Mental Health Care NHS Trust.

The Strategic Health Authority have now sent me a copy of their January minutes which makes it clear that they are one and the same with the former replacing the latter. Please ignore my last e mail.


Mike Cox. 16.04.04.


Dear Brenda Cook

C.P.P.I.H. CompIaints Procedure

On Thursday 25th March. I attended your office for the purpose of communicating serious concerns regarding my endeavours to implement the principles laid down in THE REFERENCE GUIDE FOR MEMBERS OF P.P.l. FORUMS (version 6). Notwithstanding prior obtaining copy of the Draft Complaint Policy Document from The Enquiries Officer at H.Q. my visit to The Westbrook Centre was designed to implement Section 8 Para 8.53 of Version 6, rather than, initially, proceeding via formal complaint.

The interviewer, identifiable only as the PPIH East of England Region's Governance Lead, dismissed all my submissions and concerns in a peremptory manner. The exception was acknowledgement that being ejected in an offensive and public manner, from an originally billed" meeting in public", by Waveney P.C.T. PPI Forum's Chairman was unfortunate! What was, however, disquieting was her assertion that Version 6, due to impracticability of implementation, was dead" and would be superseded by decisions to be made at a national conference, being held at the end of this month, by CPPIH and F.S.Os.

Study of the Draft CPPIH 's Complaints procedure Section 10 reveals "that verbal submissions will attract confirmation back to the originator, in writing, to check that the information is accurate". Notwithstanding the fact that my visit to your office was informal, rather than for the purpose of formal complaint, I believe it is still entitled to the same treatment laid down for verbal submissions made as formal complaint.. It is also imperative for me to have confirmation as to the intended abolition of Version 6, as inevitably, this will precipitate my resignation from the EMT PPI Forum.


John Fearn 20.04.2004


Hello Lorraine Nelhams.

I mailed you on 09.04.04. asking for information in the public domain. I explained that I had been directed to you by Eastern England CPPIH for this information. Mike Butler and Carol Ponniah have long since replied with the information requested from them.

All I am asking of you are the times, dates and venues for Southern Norfolk PCT activities. Can you please oblige.

Thank you.

Mike Cox. 26.04.04.


to JPH - Hello Anna Hills.

I'm trying to find out who the members of the JPH PPI Forum are and what their programme of activities is. Can you please oblige or tell me who the Chair is for contact. I am in touch with Eastern England CPPIH who have suggested contact with the Forum Support Organisation but there is no facilitator at present there and they are trying to administer the local PPI Forums from Grimsby and Lincoln.

Thank you.

Mike Cox. 28.04.04.


Hello Brenda Cook.

I'm still trying to find out the what, where and when of the James Paget, Waveney PCT and Gt Yarmouth PCT PPI Forums - speaks volumes about openness and transparency, doesn't it! Shaw Trust are just not responding. I did get an e mail from Lincoln asking me yet again what information I wanted (more prevarication) but since my reply to that - nothing. Once more, can you please oblige?

It may be of interest that, as an observer, I was impressed by the early operation of the Norfolk and Norwich University Hospital Trust PPI Forum and the very good job the facilitator appears to be doing there. At their meeting I also picked up that FSO performance evaluation forms have been issued to Forum members for urgent completion. In the interests of integrity and openness, would you like me to fill one in as a member of the public?


Mike. 28.04.04.


Hello Steve Hilton.

A few weeks back you said you would let me have figures on the number of resignations from Forums nationally. Can you please chase this up.

Just locally at various trust meetings I'm bumping into people who have resigned from PPI Forums (will there be enough to form a national association I ask!). The most common reason to date is that CPPIH have recruited the great and the good usual suspects (as I pointed out in my article), retired NHS employees and former CHC members (not National Health Service users and carers) - people who are spending their time in committees rather than reaching out to other patients and the public.

Can you please comment on the record?

Regards. 28.04.04.


Mr Cox,

We have now gathered the information on resignations.

Since 1 December 2003, 662 members of Patient and Public Involvement Forums have resigned, which represents a turnover of 11%.

We haven't done a national analysis on why people resigned, but a regional survey of leavers from Forums in the West Midlands revealed that 78% of those who explained their reasons for leaving stated personal factors, such as not being able to commit enough time to Forum duties.

STEVE HILTON 28.04.04.


to Parl Ombudsman 0ffice - Hello.

I am aware that there have been recommendations over time that your office should cover issues around Nolan standards in executive NDPBs but am not sure if those recommendations have been implemented. Can you please clarify this?

Mike Cox. 04.05.04.


Hello Brenda Cook.

As an interested member of the public and the spirit of openness, please would it be possible for me to attend this workshop (regional workshop, Norwich 12th May) purely as an observer without participant rights?


Mike Cox. 06.05.04. (no reply whatever to this)



I don't know if you have received a reply to your e-mail to Anna Hills dated 28th April because she has been away on maternity leave until this week. However, the only information I have at present (and I know this is about to change) is that Valerie Talbot is co-ordinating the three local PPI forums. I only have a telephone number for the Lowestoft Office but am waiting details from the Shaw Trust who operate the forums as they are about to move premises. Telephone number is: 01502 527606 and an answerphone is operational if the office is unmanned.

Valerie's e-mail address is: valerie.talbot@shaw-trust.org.uk.

Hope this information helps.

Secretary to Elayne Guest (Mrs)
Director of Corporate Services
James Paget Healthcare NHS Trust 07.05.04.


Hello Valerie Talbot.

I finally obtained some sensible contact information in the form of your e mail address from the James Paget Hospital. This is after failing to get anywhere from requests to Brenda Cook (twice), visits to the local Shaw Trust offices, including the Cobholm office, and requests to the Shaw Trust central office. Wonderful openness and transparency (I'm getting nauseatingly repetitive on this subject - but at least all these examples are going on record).

Could you please tell me what the programmes of public meetings are for:

Gt Yarmouth PCT PPIF;
James Paget Trust PPIF;
Waveney PCT PPIF;

Thank you.

Mike Cox. 07.05.04.


to NIMHE discussion network - Hello.

Yes I'd certainly be interested but probably don't qualify under your admissions criteria! I'm a NHS user who is an ex-PPIF member - having been apalled at the 'teething problems'. I believe CPPIH is making fundamental errors that are wrecking true service user and carer involvement in healthcare and would like to see an effective campaign to make CPPIH, a QUANGO, properly accountable for its incompetence. I am also in touch with a PPIF member user who is being further stigmatised and damaged by CPPIH bureaucratised ignorance and insensitivity.

I live in Norfolk.


Mike Cox.



to Nolan Committee - Hello.

Can you please advise on appropriate channels for reporting individual public concerns about breaches of Nolan standards by a NDPB.

Thank you.

Mike Cox. 08.05.04.


to NIMHE discussion network - Hello Chris.

Interesting to hear your experiences around a change to a mental health forum. I've begun to suspect that there is much pure ignorance about the principles and standards of service user and carer involvement in CPPIH management (although the background of one or two of the Commission members says this shouldn't be so) who seem to be refugees from mainline NHS administration with all the priority corporate interests attitudes that sector has always had. That ignorance must also pervade the many retired NHS employees and public administrators that CPPIH have appointed to PPI Forums and to many of those administering the Forum Support Organisations.

It has to be that the mental health sector, because of half a century's battles for recognition of genuine service user and carer involvement, has infinitely more knowledge, understanding and acceptance - even though there is still some tokenism despite the long battles. Perhaps there might be some hope through the mental health PPI Forums. What about NIMHE offering sessional training on service user and carer involvement to CPPIH? Perhaps organisations such as ESAN and UKAN could do the same.

Looking at the work the Commission for Health Improvement did on Patient and Public involvement in the NHS (their report February 2004) I also think there may be a constructive avenue via its successor body the Healthcare Commission and representations to that new body may be useful. I'm also in touch with the Committee on Standards in Public Life to explore how concerns about CPPIH breaches of Nolan standards can best be taken forward. I'm compiling a portfolio on the latter and would welcome examples and evidence
from elsewhere.

Best wishes.

Mike. 08.05.04.


Dear Mr Cox,

A copy of your e-mail of 4 May has been passed to me. (a). You say that there have been recommendations that this office should cover "issues around Nolan standards in executive NDPBs." (b). You ask whether those have been carried out. Your points sound simple, but the facts are more complex.

The Committee on Standards in Public Life was established in 1994. It was originally the Nolan Committee, and later the Neill Committee. Latterly, it has been the Wicks Committee, but I do not know whether Sir Nigel Wicks is still the chair. The Committee has made various recommendations over the years. Those included making various public bodies, including quangos, more open and accountable, overhauling appointment procedures, and appointing a new Commissioner for Public Standards, to oversee appointments to such
bodies. I am not aware that the Committee made any specific recommendation that executive quangos should be brought within thew Parliamentary Ombudsman's remit.

Largely in response to the Committee's recommendations as to quangos, in late 1997 the new Government launched a consultation on "Opening up Quangos". One of the proposals aired was to bring executive NDPBs generally within our remit. In 1998, the Government published its response, "Quangos: Opening the Doors". The main text of the latter can be found at: www.cabinetoffice.gov.uk/central/1998/pb/open/index.htm#top (I cannot find the Foreword or the Executive Summary on-line there, but, looking at the printed version, I doubt that that matters much for present
purposes.) The remit of this Office is dealt with at paragraphs 30 and 31 in the main text. In the Executive Summary, under "more openness", main proposal 6 reads: "Executive NDPBs and advsory NDPBs which have direct dealings with members of the public should be brought within the jurisdiction of the Parliamentary Ombudsman (paragraph 31)." (That suggests that the proposal was more to do with openness, than to do with accountability; whether that was really so, I do not know.)

That was done. The main instrument was the Parliamentary Commissioner Order 1999, [SI 1999/277]. You can find that on-line at: www.legislation.hmso.gov.uk/si/si1999/19990277.htm .
There have been various later changes to the bodies in the Ombudsman's remit, but that was the main relevant change.

The effect is that (1) we can look at complaints against almost all executive NDPBs, and some advisory ones, under the Parliamentary Commissioner Act 1967, that is, complaints from members of the public that
maladministration by those bodies has caused them an injustice; and (2), until the Freedom of Information Act 2000 comes into full force next year, we can look at complaints under the non-statutory Code of Practice on Access to Government Information, that is, complaints from members of the public that those bodies have refused them official information in breach of the Code.

None of that is the same as bringing "issues around Nolan standards in executive NDPBs" within our remit. This Office deals with complaints that official error has affected members of the public in some way. There is some overlap with the kinds of thing dealt with in the Committee's reports and summarized in their "Seven Principles of Public Life". But the Committee's concerns have largely been about matters which could hardly be covered by us. For instance, a claim that someone has acted dishonestly is likely to be a claim that the public interest has suffered, rather than that a specific aggrieved person has suffered an injustice; also, it is likely to be at least partly a personnel complaint which we are forbidden to investigate (under paragraph 10 of schedule 3 to the 1967 Act).

However, as Quangos: Opening the Door" shows, the Government proposed many other changes to deal with concerns raised by the Committee. So some of the matters you mention have been addressed in other ways. For instance, there is now a Commissioner for Standards.

I hope that this explains the position.

Anthony Gilomur,
Jurisdiction Adviser,
Office of the Parliamentary and Health Service Ombudsman,
Millbank Tower,
London SW1P 4QP;
(020-7217 4243). 12.05.04.


This refers to my mail to NIMHE at 102:
I have just discussed this subject with Brenda Cook, Regional Manager, CPPIH Cambridge at the regional workshop in Norwich. I think that we should discuss the concept at our meeting tomorrow, however, Cambridge are very keen to support the whole idea of developing a learning network for MH Forums.

Reg (Mc Kenna) 12.05.04.


Hello Mr McKenna.

It is interesting that I asked Brenda Cook for permission to attend this workshop as an observer member of the public without participant rights - I conveniently received no reply. I also mailed you on 16.04.04. - I conveniently received no reply. Am I being excluded as a service user and member of the public with views contrary to the establishment?


Mike Cox. 12.05.04.


Hello Mike

Thanks for getting in touch with what is a familiar and frustrating story. In 2001/2 our organisation was tasked by the DOH to produce a report on patient involvement in the acute sector. In this detailed report we
highlighted the flaws in the Patient Forum concept in very stark terms which did not go down well with the DOH ( the truth often does not). That they ploughed on without listening is demonstrated by the fiasco that stands for patient involvement today. We have information from all over the country about Patient Forums and the farcical way they are operating or rather not operating. Yet constantly we hear from the DOH that all is well.

I spoke at a national conference on patient involvement where I expressed these concerns asking "how do we ensure that an unmarried mother with three children perhaps from different fathers gets an equal voice on a Patients Forum?". I was accused by one delegate of being condescending which I suggested she was confusing with the word "reality". I am glad you resigned from the Forum as we need more people to speak up against these Forums and how they select their members-mostly professional committee hoppers;ex CHC
members and NHS employees.

It would be good to chat-my number is 01760 722446 or mobile 07733 168283. I am pretty tied up next week on charity activities so perhaps the next week would be best.

kind regards

Ian Semmons
Action on Pain 14.05.04.


Hello Lee Bailey (DoH).

For your information I have attached two articles of mine about CPPIH. I would like these to be taken into account for the review.

I am still receiving new concerns about the competence of this organisation and how it is failing the hugely important government initiative of patient and public involvement in the NHS. If you wish, I could begin to compile a portfolio of concerns and comments.


Mike Cox. 22.05.04.


Hello Mr Briggs.

Thank you for the information which has crossed in the mail with my formal complaint to CPPIH about the information being withheld. However, I think the three months this information has taken to reach me merits the compaint and I will let it stand.

Please can you give me a date for the JPH meeting and let me know the venue for the Waveney PPIF when it has been agreed.


Mike Cox. 24.05.04.


Hello John (Fearn).

The mail from PO office for you. The PPI chief is: Harry Cayton, Director for Patients and the Public, DoH.

Best of.

Mike. 28.05.04.


Yes - I am sorry that the date was not on the e-mail for the JPH. It is on the 14th June commencing at 7pm. in the Benacre Room, the Burrage Centre at the JPH. I will send you the venue for the Waveney PPIF when agreed.

I am afraid that I do not know anything of your complaint as I have only recently taken this position, however, if you feel that I can do more to help please let me know. Yours Geoffrey Briggs. 01.06.04.


Dear Mr Cox

Thank you for your e-mail of 8 May to the Committee on Standards in Public Life concerning how to report an individual NDPB for breaches of the Nolan standards. I have been asked to reply.

As you may be aware all NDPBs have a 'parent' department, that is a department who provide some or all of the financing of that NDPB, and have responsibility for it. (For example the CSPL is an NDPB and our parent
department is the Cabinet Office). In the first instance you should present your complaint and evidence to the parent department.

If you are not happy with the way the department handles your complaint you may then take your complaint to the Parliamentary and Health Service Ombudsman. She will not investigate your complaint if you have not exhausted the complaints procedure of the department concerned. It is also likely that this complaint must be made through your Member of Parliament or another MP.
The Ombudsman's address is;
Ann Abraham
The Parliamentary and Health Service Ombudsman
Millbank Tower

You may also be interested in our current inquiry: Getting the balance right: Implementing Standards in public life, details of which may be found on our website at www.public-standards.gov.uk

Yours sincerely

Steve Barnes
Secretariat Co-ordinator 03.06.04.



Thank you for your reply. However, I had an earlier detailed response from the PHSO office which suggests it is not as simple as you say and details some grey areas. i have copied the relevant bit below. Can you please comment?


Mike Cox. 03.06.04.

---Unless it is stated otherwise, the views expressed here are apolitical, entirely my own and not representative of any other individual or organisation.
tel: 01508 548615 mob: 07941 683211

The effect is that (1) we can look at complaints against almost all executive NDPBs, and some advisory ones, under the Parliamentary Commissioner Act 1967, that is, complaints from members of the public that
maladministration by those bodies has caused them an injustice; and (2), until the Freedom of Information Act 2000 comes into full force next year, we can look at complaints under the non-statutory Code of Practice on Access to Government Information, that is, complaints from members of the public that those bodies have refused them official information in breach of the Code.

None of that is the same as bringing "issues around Nolan standards in executive NDPBs" within our remit. This Office deals with complaints that official error has affected members of the public in some way. There is some overlap with the kinds of thing dealt with in the Committee's reports and summarized in their "Seven Principles of Public Life". But the Committee's concerns have largely been about matters which could hardly be covered by us. For instance, a claim that someone has acted dishonestly is likely to be a claim that the public interest has suffered, rather than that a specific aggrieved person has suffered an injustice; also, it is likely to be at least partly a personnel complaint which we are forbidden to investigate (under paragraph 10 of schedule 3 to the 1967 Act).

However, as Quangos: Opening the Door" shows, the Government proposed many other changes to deal with concerns raised by the Committee. So some of the matters you mention have been addressed in other ways. For instance, there is now a Commissioner for Standards.

I hope that this explains the position.

Anthony Gilomur,
Jurisdiction Adviser,
Office of the Parliamentary and Health Service Ombudsman,
Millbank Tower,
London SW1P 4QP;
(020-7217 4243).


Mr Cox

Thank you for your email. I will try and respond to some of the points in it.

1. At no point in my email did I suggest the process was simple! It is not immediately clear to me what the "grey areas" are.

2. The information I provided you with is that which we understood the Ombudsman's Office recommends, indeed if you visit www.ombudsman.org.uk you will find the following under how to make a complaint;

<<The Parliamentary Ombudsman.url>>

If that is contradicted by the Ombudsman's office, then I would of course recommend you follow their guidance as they are the regulator.

3. I am not aware of a Commissioner for Standards, but would assume this relates to Sir Philip Mawer who is the Parliamentary Commissioner for Standards. Sir Philip only looks at complaints against MPs and as your email made no reference to a complaint against an MP, I would not advise you to contact him. I assume the writer is just using this as an example of other bodies set up on our recommendations.

4. I am not sure that the same email was sent to both ourselves and the PHSO, but, on the basis of the one sent to us, the process was as I described in my email and I can add nothing further to it.

Steve Barnes 03.06.04.


(to Shaping Our Lives) Hello.

I'm a National Health Service user with a long standing (30 years) involvement in service user and carer involvement. Since 1999 that has taken an increased focus on the development patient and public involvement in health and since Dec 2003, specifically on Patient and Public Involvement Forums, the statutory replacement for Community Health Councils.
There seems to have been a surprising absence of organised service user led research in this sphere, particularly since service users and carers "have battled to get their voices heard as credible, legitimate and truly independent - free from attempts at interference and influence by professionals and free from attempts to manage, control and direct by corporate interests. That movement is called service user and carer involvement and it should be synonymous with Patient and Public Involvement. PPI Forums with their statutory identity and powers established by the National Health Service Reform and Health Care Professions Act 2002 along with section 11 of the Health and Social Care Act 2001 should then offer huge benefits for the development of real service user and carer independence of thought, voice and action." ('PPI= Patient and Public Impediment', Mike Cox, February 2004).
My own simple research at the time of writing the quoted article included contacting 37 organisations representing service users. None, apart from three had even heard of PPI and those three were disinterested. Two of the three said they had been involved in preliminary consultative discussions with DoH but, "unsurprisingly, the government wouldn't listen to what they had to say."
Further simple research had included monitoring the activities and processes of the regional CPPIH, the local Forum Support Organisations and six local PPI forums. In this I have found reason to be seriously critical of CPPIH, concluding they have presided over a hugely important concept for service user and carer involvement but have turned it into a sad travesty. Surely this is an area Shaping Our Lives should be immersed in?
Following the results of John Reid's review of 'Arms Length Bodies' last Thursday I sent MIND and NIMHE the following:

to NIMHE discussion group, MIND and Shaping Our lives - Hello.

REJOICE. Not as Tony Blair would have us do - at the deaths of tens of thousands of human beings - but legitimately and appropriately, at the demise of the Commission for Patient and Public Involvement in Health. (Reconfiguring the Department of Health's Arms Length Bodies http://www.publications.doh.gov.uk/cebulletin22july04.htm#6 ).

CPPIH, the QUANGO which has made so much of a hash of implementing the hugely important concept of Patient and Public Involvement Forums will be abolished. Gone will be the people leading this; those ex-NHS managers with bureacratic and corporate mindsets and those minor politicians driven by self interest who have shown no understanding whatever of the special ethos and culture of service user and carer involvement - and who have wrecked the initial massive opportunity to take service user and carer involvement forward into the 21st century.

We have then a second chance. The arrangements are that the DoH will hold discussions with stakeholders over the summer and produce a detailed action plan in the Autumn to take PPIFs forward in the future.

We, the ordinary National Health Service users and carers, are major stakeholders (and not just those who live in and around London!) in this and should be involved in those discussions as from NOW. We have a fresh opportunity to salvage much of the wreckage created by CPPIH.

I have been conducting some simple research over the past few months looking at how the initial processes of local PPIFs have been functioning. One of the indications from this (and its just that - an indication) is that the mental health PPIFs are functioning on the lines of real service user and carer involvement while the generic hospital and PCT forums have little inkling of what this is and how it works. This is not surprising. Those involved in mental health have a good thirty years' experience in true service user and carer involvement, largely via the development of user led advocacy. The current membership of generic hospital and PCT forums seem largely to be made up of former NHS employees; former CHC participants; business people doing their bit for charity; and former professional - nurses, doctors, occupational therapists etc. These people have the oh so familiar blind spots and blinkers regarding service user and carer participation and involvement that we have all wrestled with over the past thirty years. Indeed, during my research I have more than once suggested that service users and carers from mental health PPIFs could be used for training resources in true service user and carer involvement. It doesn't surprise me those suggestions have been totally ignored - part of the thankfully short-lived CPPIH ignorant and arrogant culture.

You may think - well, let them get on with it, we're ok. However, we also need surgery, physician attention, orthopaedics, coronary care, diabetic care, podiatry, ambulance services, dentistry etc.,etc., from time to time and, as has been pointed out recently, we too often get the short straw in all of those kinds of things. So we do have a very important investment to make here.

Maybe I'm an incurable optimist but we do have a tremendous further opportunity.


Mike Cox, 23.07.04.


Dear Mr Bacon.

In a short series of e mails at the end of February/beginning of March this year, I brought to your attention serious anomalies in new PPI forums (Patient and Public Involvement Forums - the replacements for Community Health Councils). You were less than willing to accept what I was saying then and unwilling to make inquiries yourself to verify what I was telling you. For your full information I have enclosed a copy of my article on the subject published in Care and Health Magazine 13 - 19 April 2004 under the title ‘Access all Areas’.
As my constituency MP I now have to ask you to refer current associated matters to the appropriate Minister for State and advise me of the outcome of that referral. With your initial disregard in mind I am obliged to tell you unless I hear of constructive action on your part within 20 days, you leave me no choice but to refer the matters to the Parliamentary Commissioner. As a means of independent verification I have also copied this letter to Marcia White, the Editor of Care and Health Magazine.
Over the course of this year, as a member of the public and a National Health Service user, I have independently monitored the progress and processes of the East of England Commission for Patient and Public Involvement in Health (the ‘arms-length body’ responsible for setting up and running PPI forums; the two local Forum Support Organisations (the not-for-profit bodies commissioned by CPPIH to facilitate the PPI forums); and 6 local PPI forums in Norfolk and Suffolk. The general results of that monitoring are of concern in themselves but the demise of CPPIH in John Reid’s review of arms length bodies reduces their importance.
What is of serious importance is:

  • that the personalised identity warrants finally issued to forum members in this area at the end of last month already have a potential for misuse. The FSO facilitator at the PPI forum meeting I attended last week made a general announcement at the point in the proceedings dealing with current resignations (two at this meeting and a steady rate throughout the UK). He said he had been asked to announce that all identity warrants belonging to those who have resigned should be returned immediately to the FSO - that there is a current national problem of resigned members telling CPPIH they had cut up their warrants and had thrown them away - in which cases there is no means of verifying what they have said.

  • there are already anomalies arising (as I pointed out there would be in my article) with adequate supervision arrangements in the absence of Criminal Records Bureau checks. Forum members here are making unsupervised individual visits to Trust facilities. Surprised to find this happening I asked at meetings for clarification. “Yes of course we are making individual visits” they said.

  • with the ALB review abolition of CPPIH there is also going to be a period, at least until the firm decisions about future administration of PPI forums mooted for the Autumn, in which the lack of proper lead strategy could threaten a further potential for child and vulnerable adult abuse via these unchecked, unsupervised forums. There is a need for interim safeguards during this period.

My intention is not to point the finger at any particular PPI forum in this area, or indeed any individual forum members. I think it is the overall structures and policies that are at fault. And I am certainly not saying, and do not even suggest, that any of the people involved in my sphere of local research are potential child abusers, vulnerable adult abusers or distraction burglars. I have then, not mentioned the names of specific PPI forums here. If necessary and appropriate I can supply these.
I look forward to hearing of the outcome of this letter.

Yours sincerely.

Mike Cox.26.07.04.


Hello Helena (Norfolk MH PPIF).

Thanks for checking. What I intended to try to convey was that in my experience of how PPIFs are functioning or still preparing to function (and there has to be a caveat here that my first hand experience is limited to local PPIFs) the mental health forums seem to be ahead in what they are doing (from my point of view, which is a service user and carer involvement standpoint) - I certainly think yours in particular is operating at a higher standard and more appropriately than any of the others I have had contact with and from indirect contacts that appears to apply to mental health forums elsewhere.

Indications from what limited simple research has been possible so far are that the generic forums (hospitals, PCTs and ambulance trust forums) have little inkling of the principles of true service user and carer involvement (and neither have CPPIH or the FSOs) while many of those involved with mental health forums have a 30 year start via user led advocacy services.

You should be aware that in these first few months I have been highly critical of CPPIH competence and have published articles exploring what has been happening. I have attached two of these for your information. Also, if you subscribe to the NIMHE online user network, you will see I have just posted an appeal there for NIMHE to take the lead in trying to secure service user and carer representation in the DoH discussions over the summer to determine the new arrangements following the demise of CPPIH. I am extending that appeal to MIND.

Now that CPPIH is abolished, and if the new arrangements establish proper partnership processes which fully include service user and carer involvement principles, I may apply again for PPIF membership, with the proviso that I have found I can do much more functioning independently as a National Health Service User than as a forum member. I also think generic health services are equally, if not more important in the mental health field (and have reservations about the segregation of mental health services initiating stigma), However, if there is some resolution of the problems created by CPPIH your forum would be my first choice and I would be only too pleased to be accepted as a member.

Best wishes.

Mike. 27.07.04.


Many thanks for explaining your position Mike, I had no awareness of your activities, he problem we have is that we started with four service users who have learned a great deal from what has been a very fast moving and sophisticated SU Council. We have all therefore much experience of the Trust managers political skills, statements not always related to reality, refusal to face up to professional incompetance or abuse.The other members have little time,no even basic knowledge,and little political nouse (if any at all ). Service Users are often struggling with health issues, have little energy, lack transport, ect ect.

We urgently need a skilled energetic,skilled chair, who can communicate with the vTrust at a sophisticated level,and who understands that assertion is'nt a negative thing. I very much hope you will end up joining us, and I do hope it will be soon.You will be aware of the desperate state of services in this Trust, and the large swathes of the county that lack services for some client groups. The Service User Council is likely to be much less effective from the autumn,because the chair who has led the rapid growth has to retire.

Hope to see you with us soon. 27.07.04.


Hello Helena.

If I can be of any help as an independent NHService user I'd be very happy to get as involved as soon as necessary. My only claim though to be considered a mental health service user is a chronic unipolar affective disorder which is comparatively low level (although serious enough to me) and has never been treated beyond primary care. If you do think I could be of use in that independent capacity, I don't know if para 10 (3) of the PPIF Membership and Procedure Regulations might be an opening? Whatever, you would obviously need the full agreement of the forum.
In the meantime, I absolutely agree with you on the state of the Trust services and how some healthy assertiveness should be part of the user/corporacy relationship. On that score and with reference to your frustrations in past minutes, I think forums should be fully using section 11 of the Health and Social Care Act 2001 to wave directly in front of Trust faces and if that doesn't start some movement, to take action on para 7 (1) of the PPIF Functions Regulations. I think one of the difficulties here though is that I'm sure CPPIH have had a hand-in-glove hidden agenda with the FSOs to manage and repress any forum activity which might be seen as adversarial. And I'm sure you will have noticed that the supposedly independent PALS set-ups are mostly peopled by Trust employees with organisational mindsets and corporate loyalties!
Perhaps the least we should do for the time being is keep in close touch.


Mike. 27.07.04.


28th July, 2004.
Harry Cayton,
National Director for Patients and the Public,
Department of Health,
Richmond House,

Dear Mr Cayton.

The future of Patient and Public Involvement Forums

In a speech in November 2002 you said: “The new relationship between health professionals and service users requires openness, mutual respect, sharing of expertise and joint decision making.”

Following the decision to abolish the Commission for Patient and Public Involvement in Health taken by the John Reid review of DoH ‘Arms Length Bodies’, we have an excellent opportunity to take “The new relationship” on into the 21st century. The Arms Length Bodies review (DoH, 22.07.04.) says: “The Department will now move to detailed discussion with all interested parties about how to implement each change....Over the next 3 - 4 months the Department will work closely with the Devolved Administrators, ALBs, staff interests and other stakeholders to draw up implementation plans.” (my emboldening). Simple, unsophisticated National Health Service user independent research1 amongst others, points to two questions relevant to this opportunity. They are:

• Service user and carer organisations in the fields of mental health and physical disability in particular have 30 - 40 years’ experience of developing service user and carer involvement in healthcare services, in large part through the establishment of user led advocacy services. There seems to have been little if any utilisation of this existing pool of knowledge in the initial setting up of Patient and Public Involvement Forums. Either that or that expertise was ignored. Observation of the processes of PPIFs in one area has indicated that mental health PPIFs are beginning to function within a true service user and carer ethos, while generic PPIFs (PCTs hospitals and ambulance trusts) have no inkling of the principles of service user and carer involvement and some are actually operating in ways counter to service user and carer involvement. It is enough that this has happened in one area, let alone that these elements may be reflected nationally. Why has this happened?

• The publication of the DoH discussion document “Involving Patients and the Public in Healthcare” heralded a tremendously constructive step forward for healthcare policy in this country. That step forward also brought with it a positive promise for the advancement and formal accreditation of those existing service user and carer involvement activities. Yet, contact with 37 front line independent organisations representing service users and carers in one way or another in February of this year2 three months after the implementation of PPIFs - revealed no mention of PPIFs, no plans to participate, very little interest and even expressed disinterest in, and some underlying resistance to PPIFs. Why was this?

Whatever the answers to those questions might be, the DoH’s commitment to work with “...all interested parties about how to implement each change.” is a wonderful opportunity to address the apparent anomalies. We National Health Service users and carers are certainly first level stakeholders and we ask for your backing for full inclusion in the DoH discussions towards the implementation of the new PPIF arrangements and “openness, mutual respect, sharing of expertise and joint decision making” in those discussions.

Yours sincerely.
Mike Cox,
National Health Service user.
1. Research into the processes of six PPIFs in Norfolk and Suffolk, December 2003 to date, Mike
2. ‘PPI = Patient and Public Impediment’, in various outlets, Mike Cox, February 2004 and
“Access All Areas”, Mike Cox, Care and Health Magazine, April 19, 2004.


Dear Mike Cox,

Thank you for your letter to Rethink's Head Office of 28m July regarding the discussions about the future of Patient and Public lnvolvement Forums.

I am already in touch with the Chief Nursing Officer and Harry Cayton, who are leading on this for the Department of Health. We urged right back at the start that the new commission should form strong alliances with user and carer organisations and the 'patient movement'. It was disappointing that they did not do so, and much of the present problems stem from this. However, we do now have another chance, and are certainly lobbying to this effect.

One of the great difficulties is that user, carer and patient organisations have no national umbrella body to represent them as a whole. We are working through the Long-term Medical Conditions Alliance, which is the umbrella for national health charities and 'patient organisations'. You may wish to get in touch with them as well.

With best wishes,

sincerely, Cliff Prior 02.08.04. Chief Executive, Rethink.


Hello Hilary.

Thanks for the invite (to the Service Users’ Council at Hellesdon Hospital). Following my attendance at the Norfolk mental health PPIF public meeting last month, Helena Allen, who confirms she knows you and Elizabeth from the Council, got in touch and we've had some online conversation about joining the PPIF. However, as I said to Helena, I've found that I've been able to do much more as an independent member of the public outside the bureaucratic structures that have been erected around the Forums. I was an initial member of the Southern Norfolk PCT PPIF but found very early on that CPPIH were strategically using the Forum Support Organisations to control and manage the Forums which were supposed to make independent patient (their terminology) decisions. I had a developing discourse with Brenda Cook, the regional CPPIH manager when I personally encountered a blatantly discriminatory act by CPPIH (and I had talked to their training officer a week before about the particular disability involved) at their second training day. That was the last straw and I resigned. But I soon found being outside the PPI stifling structure gave me more scope to observe, research and comment. I also know another service user who has been very unfairly pilloried by CPPIH (via an anonymous complaint) and has been badly hurt by that act.
The upshot is that, although I would dearly love to be operating as a member of a service user and carer group, I am loathe to compromise that independence. While I'm aware of the excellent and extensive work the Hellesdon Service User Council has done (Sarah Middleton and I used to work together in Norfolk Mental Health Advocacy) I'm also directly aware (from admittedly infrequent contacts as a training committee ASW rep and reporting for the Beccles Essential Voice at some meetings) that the trust has misused its bureaucracy to attempt to stifle your work and I'm afraid that the frustrations involved there would just make me lose my rag. So I'm hanging on for the time being to see what develops in PPI with the demise of CPPIH. I have some hopes of the Healthcare Commission - I think their Strategic Plan has much promise.
However, if there is any way I can be informally involved with the Council, I'd be delighted. And yes, where I live is a problem, but a problem which should not exist - so much for social inclusion!!
Whatever, its good to talk to you - thanks.

Mike. 02.08.04.


Hello Mandy (NIMHE discussion group).

This is just what we want: more service users and carers talking to each other publicly in a straightforward, open and honest way, gathering those thoughts, views and informed guesses - and evidence of bad practice and policies (and as you say there are plenty of them) alongside instances where there are examples of good practices and policies, and presenting them in frank but measured ways to influence changes in law, practice and service planning. There is, again as you point out, still a great deal of mealy mouthery and empty propaganda about, but the service user and carer movement has long experience of this and has developed skills to recognise it when we see it. We should not be afraid to confront it, challenge it and expose it when it raises, as it does all too often, its ugly head.
However, I do think positive and concrete opportunities have developed in the last four years in particular. One of these is potentially a powerful aide for service users and carers wrestling with trust bureaucrats. Section 11 of the Health and Social Care Act 2001 hasn't been much used up to now. It places a duty on NHS trusts Primary Care Trusts and Strategic Health Authorities - to make arrangements to involve and consult patients and the public in service planning and operation, and in the development of proposals for changes: 1. not just when a major change is proposed, but in ongoing service planning; 2. not just in the consideration of a proposal, but in the development of that proposal; and 3. in decisions about general service delivery, not just major changes. I'd like to see service user and carer organisations joining together with interested and friendly lawyers (and yes, they do exist) to test this law where trusts have refused service user and carer involvement.
As I said in my reply to Elizabeth, I'd also like to see the media used more by service users and carers to report failings in practice and policy - and to report good practice and policy which can also be a powerful tool (did you see the open letter to the Prime Minister and Chancellor in the papers today? I think that is a brilliant move on the part of the campaigners). Community Care Magazine has recently started a service user column and Mike George of Care and Health Magazine is always ready to consider material for copy. The national dailies scan even the small community newspapers for stories so its worth getting reported in them. Establish contact with your local newspaper reporters and local radio presenters too. Service user and carer organisations should study whistleblowing issues - look at bodies such as Public Concern at Work and Freedom to Care (the latter more radical and less recognised officially). Use Google to find them on the net.
One of the difficulties with this is that such activities are uncomfortable to government related bodies (like NIMHE or the late CPPIH) and if they are involved there will be attempts to censor in the name of diplomacy and moderation (which, translated from Mandarin, means mealy mouthery).
Yes. 70 million pounds went missing (either in 2000 or 2001) which was supposed to have been earmarked for mental health. The Guardian reported it and the story can probably be found in its web archives. The net mentalhealthlaw discussion group (which is well worth subscribing to - there are several service users and carers who contribute, including Rosemary Moore of Mental Magazine) also tossed it around and, from what I remember, the best guess conclusion was that it had disappeared in the payment of trust debts - a scandal which was efficiently suppressed by government despite its airing in the Select Committee on Health. I'm sure that concerted service user and carer campaigning at the time could have prevented that suppression.
If you and everyone else have no objections I think we should keep any mailings public and open to this group (unless of course confidentiality is involved). Good to have your contact.

More strength to your elbow.

Mike. 02.08.04.


Extract from mail from Ronald Le Bruin, DoH (my emboldening)

However, we acknowledge the need for stronger and more efficient arrangements to provide administrative support and advice to Forums. We are committed to involving Forum members in delivering the most effective solutions. The NHS Appointments Commission will take on responsibility for
making appointments to Patients' Forums.



Hello Mr Prior.

I've had a reply from Meredith Vivian with some dates for a meeting and I'm waiting to hear from Reg McKenna which ones he and Jan Wallcraft can make. However, in line with my previous mail where I expressed the view that we should be speaking with a concerted voice, I'm wondering just what value this meeting with just Reg McKenna, Jan Wallcraft and I at DoH might have and whether it could actually be devisive.

You said that yourselves and LMCA are already in touch with DoH and presumably you will be having discussions. If that is so, my inclination is to leave it to yourselves and to cancel my own separate direct contact with DoH.

I'd be grateful for your comments.


Mike Cox. 26.08.04.


Hello Chris Coath (Norfolk OSC).

I'm involved with discussions about the future of PPI which I think Norfolk OSC should know about. For your information I have attached a PDF copy of my letter of 28th July to Harry Cayton, DoH PPI lead. In relation to this issue, I am also in touch with Meredith Vivian of DoH, Reg McKenna of the National Institute of Mental Health, Cliff Prior of Rethink, and via Mr Prior, the Long Term Medical Conditions Alliance.

I had a reply from Mr Cayton inviting a meeting. Reg McKenna asked if he and Jan Wallcraft, NIMHE's Expert by Experience Fellow, could be included. MV has said that's fine and we are currently looking at dates.

Reg also asked me for my thoughts on the future of PPI and I gave him my paper on that subject last week. This is also attached for your information.

I hope this is helpful. Please don't hesitate to contact me if you have any queries.


Mike Cox. 31.08.04.


Hello Mr Vivian.

Thank you for your meeting dates. Reg McKenna and Jan can't do the 17th or 21st. They have suggested 28th or 29th but I'm away that week.

Can I please return to the original invitation and ask you for dates in October when Mr Cayton will be available.

This also seems an appropriate time to let you know of and link up with separate correspondence with my constituency MP. I have attached a copy of my letter to him of 26th July. The letter was sent with my article about the appointment of 4600 volunteers unscreened by CRB and their potential threat to children and vulnerable adults, a copy of which you already have, and it refers to that issue.

Richard Bacon duly passed my letter on to Rosie Winterton and her reply dated 24th August was passed to me. Her reply is an anodyne piece of politicospeak which trots out stock press release comments and completely fails to address the focal issue (not that I expected anything else), although she says she has copied my letter to Laura McMurtie. I have to say at this point I think that CPPIH with their legacy of PPI wreckage are the worst people to be involved in making interim safeguards (or planning the PPI future for that matter).

In my article I mention CPPIH telling me of urgent talks with DoH about the issue. That was back in April. Can you please tell me what decisions came out of those talks?


Mike Cox. 01.09.04.


Hello Mr Hilton.

Back in April you told me CPPIH were having urgent discussions with DoH about the above issue (CRB checks). Can you please tell me what the outcomes of those urgent discussions were?


Mike Cox. 01.09.04.


Dear Mr Cox,

You may be aware that your letter on this subject that went to the Minister via Richard Bacon MP has been passed to Laura McMurtrie for reply (yesterday). We will respond to Mr Bacon in due course, and I will
make sure you are copied in by e-mail.

STEVE HILTON 01.09.04.


Hello Mr Hilton.

Yes I'm very well aware of that but you should also be aware that the subject of my letter to Richard Bacon is not that of the urgent discussions you said took place between yourselves and DoH in April, which is what I asked you about.

I wonder what I should read into your prevarication. Or are you saying Laura McMurtie will answer my question to you in her response? Or perhaps you will respond for her and give me an answer then? Perhaps my question will just disappear into that black information hole that characterises CPPIH. No change there then.

Some say good old Nolan!


Mike Cox. 01.09.04.


to Shaping our Lives - Hello.

I've been in touch with SoL a couple of times in the past few months and had a brief correspondence exchange with Eamonn in March.

I have been working independently on issues around PPI Forums and SU and C involvement and have mostly been in touch with organisations such as NIMHE and Rethink. However, although I think the expertise developed in mental health is invaluable, I would like to see the development of a generic service user and carer organisation such as yourselves (the commentary section of the attached paper expands on this). I think then, you should at least have knowledge of the rather minor independent campaign I'm in the middle of.

At the end of July I wrote to Harry Cayton (I did copy the letter to you but have attached a copy here for ease of reference). His reply invited me to arrange a meeting through Meredith Vivian. NIMHE East had been one of the platforms for preliminary discussions and Reg McKenna asked me for my detailed thoughts on PPIFs' future. I produced the attached paper for him. Reg also asked if he and Jan Wallcraft of NIMHE could be included in the meeting with Harry Cayton. Meredith Vivian readily agreed to this and we are currently awaiting dates in October convenient to all.

You will see from the paper that my values lean towards your aims and first of all I wonder if you could also become involved in the discussions and, secondly, as it looks as if we have common aims, if I could become involved with SoL (in a voluntary capacity) and do some work for you.


Mike Cox, 03.09.04.


Dear Mr Cox

Further to my earlier correspondence, as you know I wrote to the Secretary of State on your behalf, but my letter was passed to the Commission for Patient and Public Involvement in Health, to respond.

I enclose a copy of the reply which I have just received from Ms Laura McMurtrie, the Chief Executive of the Commission for Patient and Public Involvement in Health for your information.

You will wish to note in the penultimate paragraph of Ms McMurtrie's letter that if you could provide further details of the unsupervised visits in East Anglia this matter will be investigated.

Yours sincerely



Dear Mr Bacon

Thank you for your letter to the Secretary of State for Health dated 3 August, enclosing correspondence from your constituent Mr Mike Cox. As you know the Minister has asked me to reply to you direct about the points Mr Cox has raised.

When the Commission was initially established the Department of Health's view was that Forum members would not have direct individual access to vulnerable groups and, therefore, would not require an application for Criminal Records Bureau (CRB) disclosure as an element of the selection process. As part of our monitoring of Forum activities and as a result of our own developing procedures, we decided to review that initial decision. We have now decided that it is necessary for Forum Members to have CRB checks to reduce the risk of harm to vulnerable groups. This view is now supported by the Department of Health.

The Commission has agreed a project plan to take this forward and the timescale for the commencement of CRB checks on Forum members is planned for the end of October 2004.

In the meantime we have practices in place, which we have had from the outset, that help to safeguard children and vulnerable adults:

  • Criminal convictions statement on application forms, backed by possibility of dismissal if false information is used;

  • Two forms of ID are required in order to get the ID card which must be used on every visit;

  • Guidance that cards must be worn on visits and that members should visit in pairs or small groups;

  • Advice that good practice for "on spec" visits is to phone an hour before visiting;

These practices will continue alongside the CRB checks. NHS Trusts and PCTS should also have effective protection policies In place for people in their care.

I note Mr Cox's allegations about unsupervised visits occurring in East Anglia. If he is willing to give me the details I will ensure that they are investigated because, as I have indicated, what he alleges runs contrary to the advice we have issued.

I hope you are reassured that we take this matter very seriously indeed. Yours sincerely

Laura McMurtrie
Chief Executive 14.09.04.


Dear Mr Bacon.

Thank you very much indeed for your intervention with DoH and CPPIH on the matters relating to child and vulnerable adult protection which I referred to you. I think you have contributed to a positive outcome. I am writing to Laura McMurtrie as she has requested.

I do remain concerned that CPPIH are still involved with the future of PPI Forums considering their incompetence in setting up the system, but that is another matter. I have a meeting with Harry Cayton and Meredith Vivian at DoH on 28th October to discuss full service user and carer involvement in the future running of PPIFs.

Thank you once again for your help.

Yours sincerely.
Mike Cox. 29.09.04.


to Care and Health - Sorry Rebecca (Ellinor).

The holes in my head are leaking! Probably too late now but I've pasted the text of my letter to Laura McMurtie below - there's a couple of things you could quote me on from that if you wish.


Mike. 01.10.04.

---Unless it is stated otherwise, the views expressed here are entirely my own and not representative of any other individual or organisation.
tel: 01508 548615 mob: 07941 683211


Dear Ms. McMurtrie.

CPPIH and child and vulnerable adult protection

My constituency MP, Richard Bacon contacted the Department of Health as a result of my letter to him of 26th July. They in turn referred the matters to you and you replied directly to Richard Bacon on 14th September. Mr Bacon has sent me a copy of your letter.
You will know that I have been concerned about these issues for some time, setting out those concerns in an article published in Care and Health Magazine in April this year. I am very pleased to read in your letter to Richard Bacon that CPPIH and DoH have now taken the positive decision to CRB screen all existing members and new appointees to PPI Forums. Applause for that decision.
Out of research into these issues I have been aware for some time of the CPPIH view that protection could be maximised by supervision and control policies (and indeed I included a statement from CPPIH to this effect in my article). That is a view I thought incredibly naive. Identity warrants are misused all the time by those of a criminal persuasion - local authority social services warrants are an obvious example. A PPI ID is a powerful entry tool backed by its unique legality. Once in possession of this warrant there is nothing to stop an individual using it and misusing it as they wish outside of the very loose and diffuse confines of the PPI Forum.
The only available effective means of minimising that sort of misuse (we know the sad reality is that someone will always manage to manipulate whatever system there is) is by use of full screening prior to appointment. I suggest a next step would be to also consult the new PoCA list.
In your letter you ask about details of “unsupervised visits occurring in East Anglia”. Having a raised consciousness about the matters I had been aware for some time of anecdotal accounts of lone activities by a variety of Forum members, usually as a result of over- enthusiasm and frustration at the lack of organised PPIF activity. What prompted this inclusion in my letter to Richard Bacon was my presence at a July PPIF meeting at which the issue of missing IDs arose. At that meeting I was surprised at the open (and no doubt minuted) reporting of lone visits to hospitals and surgeries being made by individual members. I interrupted the proceedings at that point and checked with one of the reporting members. “Yes of course we are making individual visits” was the response and this was followed up by the observation that joint visits are manpower expensive and realistically rarely possible. However, I also said in my letter to Richard Bacon: “My intention is not to point the finger at any particular PPI forum in this area, or indeed any individual forum members. I think it is the overall structures and policies that are at fault.” Suffice to say that this was a Forum facilitated by the Shaw Trust. I am confident in myself that there was/is nothing untoward here and your increased attention will reduce potential risks. I also agree that, in reality, if the system is to work, individual activities and initiatives (with Forum approval) will have to take place. CRB screening should allow that.
Sadly, given your constructive decision to introduce CRB screening, I have to conclude this letter with an expression of concern that, considering the mess CPPIH have made setting up PPI, it remains involved and in the forefront of discussions about the future of Patient and Public Involvement. CPPIH’s continuing influence can only be negative.

Yours sincerely.

Mike Cox.


Hello Reg.

I have decided to cancel this meeting. I have written to Harry Cayton (copied below) explaining.


Mike. 18.10.04.
Dear Mr Cayton.

The future of Patient and Public Involvement Forums: meeting scheduled for 28.10.04.

Following my letter to you of 28th July, 2004, you wrote inviting a meeting with yourself. This was arranged for 28th October at 3pm.

Further thoughts about this meeting have raised questions for me about its purpose and value. I have been clear that what is needed is a concerted approach by service users and carers and individual discussion can only have token worth. I am too, conscious that yours and Mr Vivian’s time is valuable and can be better used; and getting to London for me is not the easy trip it used to be. I am then withdrawing from our meeting. You already have a written record of my views which I hope you can take account of.

However, what I will say is that I was impressed that you were willing to put aside the time to discuss the issues with an ordinary every day National Health Service user. I very much appreciate that and I say so publicly because it gives encouragement to other ordinary service users and carers that their voices are not always wasted. Perhaps the Department would be good enough to keep me informed of developments relating to the future of PPI.

My very best regards.


Dear Mr Lowden.

Future Support Arrangements for PPI Forums

Please accept my two enclosures: my revised detailed submissions on the ALB review, originally produced in response to a request from Reg McKenna of NIMHE and presented to Meredith Vivian and Harry Cayton; and a copy of my letter of complaint to Steve Wells.

In particular, I would refer you to the serious position of CPPIH and DoH still seeking to exploit the good will of a few thousand volunteers, knowing that these people have no redress for poor administration, incompetence, discrimination, duplicity and breaches in standards in public life by CPPIH (or potentially by its successor body), and knowing that volunteers have no personnel rights and no rights under disability discrimination legislation.

Please acknowledge this letter and its enclosures, inform me what you intend to do with my submission and keep me informed about any progress and developments with regard to future PPIF support arrangements (the ALB review).

Yours sincerely.

Mike Cox. 17.11.04.


Hello Mr Vivian.

I'm starting to work on an article. My preparatory notes are copied below. Would you please comment on these. I will not quote you selectively.

Thank you.

Mike Cox. 18.11.04.


Problems relating to Volunteers
(with special reference to PPI)

There are several factors which are seminal to the success or failure of PPI. They are:

* the effective working of PPI relies on the recruitment of (eventually) approximately 9200 reliable volunteers throughout England;

* PPI volunteers are subject to disciplinary proceedings suspension and dismissal. And the PPI complaints system is set up in such a way that renders Forum members especially vulnerable to mischievous complaints by other members or PPI facilitators or managers (or indeed by NHS staff or members of the public). What recourse does a volunteer have in these circumstances?

* The PPI governing body is a Non Departmental Public Body (QUANGO). NDPB accountability is sparse: directly to the relevant Secretary of State via the QUANGO’s ‘parent body’; and under the regulatory changes by the Government in “Opening the Doors” (1998) to the Parliamentary Ombudsman - complaints from members of the public that maladministration has caused them an injustice and complaints that a NDPB has refused official information in breach of the code. However, The Ombudsman cannot deal with complaints relating to ‘personnel matters’. It appears that volunteers come under the PPI personnel system. Is this so?

* If volunteers in PPI are classed as coming under the personnel system there are problems because volunteers have no employment or personnel rights. Are there Human Rights implications here?

* Employees, if subject to disciplinary proceedings or suspension, have access to trade union or professional association support and ultimately an Employment Tribunal. Volunteers have no comparable rights. Are there Human Rights implications here?

* Another area which is not dealt with by the Parliamentary Ombudsman is that of governance breaches of principles set by the Committee on Standards in Public Life (Nolan Standards). Local government breaches for example can be referred to the Standards Board. There is no such means of accountability for the PPI NDPB. How can this be remedied?

* Employees also have rights under disability discrimination legislation. Volunteers have no rights under disability discrimination legislation. Are there Human Rights implications here?

* There must also be a question mark around volunteer rights under health and safety legislation. This needs exploring.

* a “Strategic Agreement” has just been published between DoH, NHS and what is termed Voluntary and Community Services (VCS). Voluntary organisations representing service users and carers have been lobbying DoH for inclusion in PPI governance. They appear to be being ignored. Why?

* There is a current Government consultation on ‘Future Support for PPI Forums’. This, amazingly, is being conducted by CPPIH, the abolished PPI NDPB (Reid’s Arms Length Body Review 2004) which has wrecked the setting up of PPI. The consultion is largely excluding public, patients, independent individuals and independent organisations (especially those organisations representing service users and carers) apart from a little known, hard to access and limited questionnaire. Is this really within the Cabinet Office Code of Practice on Consultation?


Hello Mr Bacon.

I have attached copies of recent correspondence and my submission to CPPIH for your information. The factors document has been sent to Meredith Vivian with a request for DoH comment. I have had no responses as yet.

Acting in the role of advocate with another person (I have their permission to tell you this) I accompanied that person to see their own MP. The reason for the consultation was to explore if CPPIH could be held accountable for undermining the person's good character and reputation by the way it used the CPPIH complaints policy. It has been established he cannot refer to the Parliamentary Ombudsman because it is considered a personnel matter. In a general discussion about NDPB lack of accountability the MP said select committees could now, at their discretion, consider complaints against NDPBs made via constituency MPs. I am currently researching how CPPIH and its successor can be held publically accountable - particularly for instance for failure to observe Nolan standards (the PO cannot deal with that) - and I wonder if you could confirm for me the ability of select committees to scrutinise NDPB activity.

My applause for you putting your name to the impeach Blair motion.


Mike Cox. 24.11.04.


Hello Jonathan (NIMHE discussion network).

Thanks for your mail. There seem to be an increasing amount of us. I resigned some time ago following an act of disability discrimination by CPPIH. I am regular touch with someone who has been the victim of a spurious complaint (probably made to get back at him for outspokenness) under the CPPIH complaints policy in which, as you experienced, they kept moving the goalposts. His MP is of the opinion, backed by comments from the Office of the Parliamentary Commissioner, that the CPPIH complaints mechanism is illicit.

My huge concern is that the concept of PPI is a development which is so important to service users and carers that we must press for its proper and positive application. The circumstantial evidence I have so far points firmly to DoH interference being the main barrier to this. The constructive recommendations in the original scoping report by group of service user and carer organisations (commissioned, I think, in 2001) were rejected by DoH. All the signs are since then that DoH have actively bypassed service users and carers, refusing to consult with them or listen to what they say.

The current consultation on future support for PPI Forums is no exception. Cppih are holding countrywide meetings and workshops, but only segregated ones for Forum members and, separately, for FSOs. Nothing for service users and carers, patients and public (except a limited access on line questionnaire). I have registered a complaint under the Cabinet Office Code of Practice on Government Consultations. It would be useful if others did so too.

Over the next few weeks I will put my own views section by section on this group to be kicked around. The first bit will follow this mailing.

Oh golly, me oh my! (sorry to be profane)

Mike. 26.11.04.


to CPPIH - Hello.

I wrote to Mr Lowden on 17.11.04. but have had no acknowledgement. Can you please inform me (by e mail would be fine) if my letter has been received.

Please note also that there is a typing error in paragraph 2. The words <recourse to> should read <redress for>.


Mike Cox, 26.11.04.

to DoH. Hello Mr Wells.

I wrote to you on 17.11.04. but have had no acknowledgement. Can you please inform me if that letter has been received.

Thank you.
Mike Cox 26.11.04.



Volunteer Anomalies
(with special reference to PPI)

There are facts which are fundamental to the success or failure of PPI. They are:

  • Patient and Public Involvement Forums (PPIFs) were established in England by the Government in 2003 as a replacement for Community Health Councils.

  • The effective working of PPIFs relies on the recruitment of (eventually) approximately 9200 reliable volunteers throughout England;

  • The organisation which governs PPIFs, The Commission for Patient and Public Involvement (CPPIH), is a Non Departmental Public Body (NDPB, known otherwise as a QUANGO).

  • QUANGOs are able to get away with some forms of maladministration which other bodies, i.e. local authorities, councillors and even members of Parliament, can be held accountable for. For instance, those other bodies have to comply with the Principles established by the Nolan Committee in Standards in Public Life. If in breach of these they can be held responsible for the breach. QUANGOs cannot be held responsible.

  • Equally seriously, PPI volunteers can be, and have been, subject to disciplinary proceedings, suspension and dismissal by CPPIH. PPI volunteers in these circumstances have no supports, protections, contractual rights or means of representation which employees would have in the same circumstances. PPI volunteers in this position have no rights and are defenceless.

  • In the one route of CPPIH accountability outside itself, referral to the Parliamentary Commissioner, the above problem cannot be dealt with because volunteers are classed as coming under personnel matters, which the Ombudsman cannot address.

  • PPI volunteers are doubly vulnerable becausethe CPPIH complaints system is set up in a way that enables malicious complaints by other members or PPI facilitators or managers (or indeed by NHS staff or members of the public).

  • CPPIH because it uses volunteers, and because of the context, a good proportion of disabled volunteers, is able to get away scot free with discriminatory actions. And it has done that. This is because volunteers have no rights under disability discrimination legisation.

  • PPI volunteers’ rights under health and safety legislation are at best uncertain. The Health and Safety Executive says: “HSE considers it good practice for a volunteer user to provide the same level of health and safety protection as they would in an employer/employee relationship, irrespective of whether there are stict legal duties.” So again its discretionary. Just as CPPIH brazenly declares it works to Nolan Standards then fails to observe them without any sort of comeback, so it seems they would be able to with Health and Safety matters - it is again a personnel issue and so cannot be dealt with by the Ombudsman.

  • John Reid’s review of Arms Length Bodies (QUANGOs) decided CPPIH should be abolished. However, CPPIH currently remains the central agency responsible for examining what the future governance arrangements will be for PPIFs. In view of the undoubted existing breaches of human rights that apply to PPI volunteers this seems particularly Machiavellian: CPPIH working on its own can of worms!

Mike Cox,


To Rosie Winterton.

02 December 2004

I have been contacted by a constituent of mine, Mr John Fearn, of Beccles, regarding his experience of the Commission for Patient and Public in Health

Mr Fearn was a PPI Forum member for the East Anglian Ambulance Trust Earlier in the year problems arose with the way he was carrying out his duties and he was suspended whilst an investigation was carried out.

Mr Fearn was himself unhappy about the way matters were being dealt with and made a formal complaint, which has progressed through the Commission's complaints procedure.

He was not happy with the final response to his complaint and wished to take it to the next stage, which he was informed was the Parliamentary Ombudsman. (see attached letter) When he approached the Parliamentary Ombudsman he was informed that they have no jurisdiction over it as it is considered to be "a personnel matter". This leaves Mr Fearn with no further recourse for his complaint.

I am sure that this was not the intention when the complaints procedure for the CPPIH was established but I am very concerned at this situation. Could you let me have your assurance that this complaints procedure will be amended to ensure that this does not occur again. In the meantime, to whom do you suggest Mr Fearn now appeal?

Mr Fearn hasa also raised a further concern regarding the recruitment procedures for Forum members. He makes the point that the none of the Forum members are currently required to go through CRB screening, despite them being empowered to visit residential homes, hospitals, childrens clinics etc. Is this being reviewed in the light of the Bichard Inquiry?

Thank you in anticipation of your assistance in this matter.
Bob Blizzard MP


Dear Mr Cox

I am writing in regard to your email highlighting your concerns about the PPI Forums and the CPPIH, to inform you of what is happening.

I have been informed by Jose King, policy officer, that members of our senior team will be meeting with members of the CPPIH shortly to discuss issues around the future management and assessment of the PPI forums. Your issues have already been raised within the Healthcare Commission and they will reply to you once they have conisdered your comments more fully.

Yours sincerely

Lezley Cunningham-Wood
Assistant Helpline Officer
Healthcare Commission 02.12.04.


Dear Mr Bacon.

In my last e mail to you I referred to another former member of a PPI forum consulting his constituency MP about referral to the Select Committee on Health. That MP, Bob Blizzard, has now contacted David Hinchcliffe asking if he is prepared to carry out a review of the CPPIH as it has been running for some time. You will know of my concerns about CPPIH from my correspondence with you and I would like to ask you if you could please do the same on my behalf.

You will also have seen the short serious issues mailing I sent to a group of organisations for comment (with yourself included in the group for information). Further thought on this suggests that there is a definite Human Rights issue involved here: the European Court’s recent ruling on the Bournewood case centred on there being no means of independent appeal for the person in that case. This also appears to be a factor in PPI volunteers subject to disciplinary proceedings by CPPIH and I would be grateful if you could look at this too.

Thank you for your help and support.

Yours sincerely.

Mike Cox. 03.12.04.


Dear Mike

Thanks for your email.

Re your questions:

1. I do not recognise the reference to such a programme board. A programme board has been set up to oversee the strategic delivery of the 'PPI related recommendations of the Arms Length Body (ALB) Review. That board comprises a number of organisations including the Healthcare Commission. It does not
have a remit to ensure that ongoing support is provided to forums. As you know the CPPIH is responsible for providing staff support.

As part of the consultation currently underway we are asking for feedback on how staff support should be delivered. I know there is considerable disquiet at the FSO approach, but currently there is no consensus about how best to deliver staffing. What would be your preference?

2. As you know the CPPIH is managing the process of getting forum members CRB checked. On checking I understand the position is as follows:

CPPIH has appointed Agenda for Security(AfS) to do the work necessary to get the paperwork out to forums and returned to the CRB.

AfS has sent out application packs to a pilot group of 50 forum members and all members of forums set up for m/h trusts and childrens trusts. Including the pilot this is about 130 people. This first tranche should be all checked out by the end of January.

There will be an evaluation of the pilot 50 and the AfS will proceed with remaining forum members- the CPPIH is hoepful that by the end of July all forum members will have been checked. they should be able to process about 500 per month

The AfS is also checking all new forum members as they are appointed - no new member will be issued an ID card before they have been CRB checked.

3. I apologise for not responding to your email of 18 November. However, as you then sent another one which covered the same ground - to a larger number of people - I assumed that that one superceded the first. I have no comments to make on the points you state. Clearly some of your observations are your own opinion and of course you are entitled to them.

Kind regards

Meredith (Vivian) 15.12.04.


Dear Mr Cox,

Thank you for your emails about the consultation on public and patient involvement in health, and for the letter that preceded them.

I am very sorry it has take me so long to respond.

I received your letter on 19 November and forwarded it to the Commission on Public and Patient Involvement in Health for response. They are managing the consultation process, and responding to all correspondence, including complaints.

I have asked the Commission for a copy of their reply, and will seek to ensure that the Department and its stakeholders can benefit from any lessons learned. Your input will be very helpful.

Steve Wells
Consultations Coordinator
Department of Health 16.12.04.


Hello Mr Wells.

That's strange because CPPIH/DH documentation said complaints should be directed to you. That's where I got your postal and e mail address.

Smells of the run-around to me.

Mike Cox. 18.12.04.


Hello Mr Needham.

I sent a copy of the message to your department because on your www.disability website you say: - We want to help you find out about your rights as a disabled person, and to learn more about the legislation that exists to help establish fully comprehensive and enforceable civil rights for disabled people in the UK. -

Many service users (patients) are disabled people and many of those are volunteers. My message was about the absence of (disabled) volunteer rights and centrally relevant to your department.

I am already in touch with Meredith Vivian at DH and have been for some time. Please deal with the issues as they relate to your department and please don't play the pass off game with me.

Mike Cox. 18.12.04.


Hello Mr Jackson.

Thank you for taking the trouble to respond to my mail sent to DWP. However, they were wrong to pass this off to DH (I am already in touch with Meredith Vivian over the issues as they relate to DH and PPI in particular, and have been for some time). I have contacted DWP again and pointed out they should respond to the issues as they apply to their department.

I must say though I had to chuckle at your mail: it bears no relation whatever to the issues I have raised.


Mike Cox. 18.12.4.


Hello Mr Bacon.

You will have received a copy of my reply today to Meredith Vivian at DH.

In relation to my previous request about a referral to the Select Committee on Health, could you please consider having the anomalies referred to in my mail to Meredith Vivian investigated and please do this by whatever means you consider most appropriate without involving the CPPIH (it looks as if issues are being dodged by others by merely referring everything back to the CPPIH and thus just going around in futile circles).

My gratitute for your intervention.


Mike Cox.19.12.04.



I am sorry that we have little or no say in the current CPPIH and PPI Forum arrangements. So we are unable to help with the current situation you describe.

I am aware that Forum members are likely to have a representative organisation soon, perhaps set up as part of the structures needed after CPPIH is abolished. Such an organisation might provide a route through which your issue could be addressed in future. Sorry that there is no other way I can help.

David Pink, Chief Executive, Long-term Medical Conditions Alliance 19.12.04.


Hello Mr Pink.

Thanks for your reply. It really is astonishing that service user organisations are being excluded from PPI. What about LMCA extending its remit to individuals and being used as a foundation for a National Federation?


Mike. 19.12.04.



We do hope to have more of a say in the post-CPPIH arrangements. But we are not an individual membership organisation (and no-one will fund us to be so). I am fairly sure there will be a Forums' of Forum members' organisation.

David 20.12.04.

N.B. In early 2006, David Pink was appointed to the EXPERT PANEL set up to make recommendations to the Minister on the future of PPI.


Dear Mr Cox

Thank you for your email.

I shall talk to Ms King at the Healthcare Commission - she has misrepresented the board which has been set up.

The board is not intended to be a means of seeking the views of users. It is a coming together of those organisations which have responsibilities to deliver their respective component parts of the ALB Review. It is our mechanism to consider how the 10 projects under the programme need to be delivered and to monitor that the work is being carried out to deliver effectively.

You are right that where policies are being developed we need mechanisms in place to ensure the views and experiences of users are built in - we need the evidence base upon which to formulate how national policy is taken forward. On the issue of staffing support you will know that the FSO contracts are being extended until 2006 - subject to satisfactory performance reviews, which will include the views of the PPI Forums the FSO support.

In the longer term we are currently considering how best to deliver staff support for PPI Forums. Your views, along with others, are important in this context - I shall turn again to your helpful paper. As plans develop we shall consider how best to ensure a comprehensive means by which we achieve user input.

Turning to the points you make about rights for members of PPI Forums.These are important. We are, as you know, in the process of change. AS we move from CPPIH responsibilities in this area to a new regime we shall review how matters have progressed to date and adjust for the future. The Appointments Commission will I am sure be interested in both the facts and your opinions - I have taken on board these in how we describe future infrastructure arrrangements for forums.

Thank you for the updated paper.

Kind regards

Meredith (Vivian) 20.12.04.


to CPPIH - Hello.

On 17.11.04. I made a complaint to Steve Wells at DoH about the Future Support for PPI Forums consultation. The complaint was directed to Steve Wells in accordance with the statement at the foot of the information document dated 04.11.04. and signed by Steve Lowden and Meredith Vivian.

On 16.12.04., having heard nothing in the interrim, I received an e mail from Steve Wells which said: I received your letter on 19 November and forwarded it to the Commission on Public and Patient Involvement in Health for response. They are managing the consultation process, and responding to all correspondence, including complaints.

Firstly, the initial misinformation about where to direct complaints is either tainted with management strategy to aid procrastination, or it is yet another of the numerous and ever increasing examples of CPPIH incompetence.

Secondly, and the crux of this correspondence, it is now well over 20 working days since I submitted my complaint (and when it was passed to you by Steve Wells) and I have yet to have a reply.

Please respond.

Mike Cox. 21.12.04.

The views, values and statements expressed here are entirely my own and, unless stated otherwise, have nothing to do with any other individual or organisation. In particular, my views values and statements have nothing to do with any political party.


Hello Mr? Van Den Hende (Public Concern at Work).

Thank you for your reply.

First some background so you know where I'm coming from: I was involved in the embryo stages of whistleblowing campaigning and gave the British Association of Social Workers' presentation at the Parliamentary launch of Freedom to Care, being subsequently actively involved in F2C, including early liaison with Public Concern at Work. This tells you why I'm alert to this rather oblique issue.

Since its inception, I've been researching the activities of the Commission for Patient and Public Involvement in Health from a service user (service user = patient) perspective. CPPIH is the governance body for the government's Patient and Public Involvement Forum structure set up to replace Community health Councils which were abolished in England on 01.12.03. CPPIH is a Non Departmental Government Organisation (a QUANGO) and, as such, has very limited public accountability although, in the final analysis, a referral to the Parliamentary Ombudsman can be made. CPPIH remains responsible, until its removal in 2007 under the Reid ALB review, for the appointment and supervision of volunteers for personnel members of the PPI Forums (solely volunteer manned). CPPIH currently claims to have about 4600 volunteers in place with an aim to double that number. The Forums and their membership and procedures are regulated by Statutory Instrument.

Latterly, this research has unearthed some out-of-the-ordinary anomalies. They are:

under these structures, volunteers are treated as employees would be (CPPIH has disciplinary procedures for instance) but volunteers have no rights and protections as would employees under employment law. Nor do volunteers have supports and representation as do employees with say, trade unions.

If a volunteer is dismissed, or resigns as a result of disciplinary proceedings, she/he has no means of appeal as an employee would have. Worse, because this is classed as a personnel matter, the Ombudsman cannot deal with any case of this kind (ref: Anthony Gilmour, Jurisdiction Advisor, Office of the Parliamentary and Health Service Ombudsman).

Volunteers have no rights under disability discrimination legisalation. For example, whereas an employer would be obliged to make reasonable adjustments for a disabled employee, CPPIH has no such obligation and can discriminate (and has) against any of its volunteers without sanction.

Health and Safety protections do not apply to volunteers.

This means of course that CPPIH volunteers in particular have at least substantially reduced whistleblowing protections compared to employees in the same circumstances (and at my last count CPPIH did not have a whistleblowing policy - they may have now). And as you say the Public Interest Disclosure Act does not apply to volunteers so it would seem that CPPIH volunteers would be hard put to publically express public interest concerns. The vast majority of CPPIH volunteers will have no knowledge of Public Concern at Work. How do you think these problems can be best addressed?


Mike Cox. 06.01.05.


Letter to Community Care Magazine (not published):

Workers totally exposed to the whims and demands of their masters without any forms of rights, supports, protections, or representation -- Nineteenth century cotton mill/dock workers? Third world sweatshop workers?

NO......People who volunteer for membership of Patient and Public Involvement Forums.

Their masters, the Commission for Patient and Public Involvement in Health can discipline, dismiss them and discriminate against them without the volunteers having any external means of appeal or rebuttal. Why?

Under these structures, volunteers are treated as employees would be (CPPIH has disciplinary procedures for instance) but volunteers have no rights and protections as would employees under employment law. Nor do volunteers have supports and representation as do employees with say, trade unions or professional associations.

If a volunteer is dismissed, or resigns as a result of disciplinary proceedings, she/he has no means of appeal as an employee would have. Worse, because this is classed as a personnel matter, the Ombudsman cannot deal with any case of this kind (ref: Office of the Parliamentary and Health Service Ombudsman).

Volunteers have no rights under disability discrimination legislation. For example, whereas an employer would be obliged to make reasonable adjustments for a disabled employee, CPPIH has no such obligation and can discriminate (and has) against any of its volunteers without sanction.

Health and Safety protections do not apply to volunteers.

My constituency MP has asked the Select Committe on Health to investigate the conditions pertaining to CPPIH and its performance, and has asked for an amendment to the Disability Discrimination Bill going through parliament bringing volunteers under the protection of the legislation. It would be helpful if as many others as possible could lobby their MPs to do the same.

Mike Cox, 08.01.05.


Dear Mr Cox

Thank you for your e-mail.

The issue of whistleblower protection for volunteers is certainly something we are aware of. The Government’s view is that the protection of employment law is meant to stop people suffering a financial disadvantage for unfair reasons. When we argued on PIDA that volunteers should be given its protection, the Government’s response was to the affect that, as volunteers could not suffer a financial loss through victimisation for whistleblowing, they did not need the same statutory protection as someone in paid employment.

This issue came up again fairly recently in the current review of the Committee on Standards in Public Life and there is evidence about this on their website.

Public Concern at Work is currently reviewing PIDA. It would be good if you made the case for whistleblower protection for volunteers, particularly if there are any practical examples you have of volunteers not raising concerns about malpractice because they lacked legal protection. However, as your e-mail makes clear, the issue of protection for volunteers goes beyond whistleblowing and applies to volunteers generally.

I trust this is helpful.

Robin Van den Hende 10.01.05.


Hi Mike

Thanks for getting in touch. CSV set up the NNVIA (National Network of Volunteer Involving Agencies) to allow concerns of common interest to be discussed.

Your query has been to the NNVIA disability sub-committee and as soon as I have a response dealing with your observations I will get back to you.

For your interest I have attached below information on the NNVIA.

Thanks again for you query.

Kindest regards,

Paul (CSV) 12.01.05.



Tried to contact you this morning by 'phone. Appreciate a call or a quick email to tell me when you will be available.

Steve (Lowden) 17.01.05.


Hello Mr Lowden.

Without trying to be negative or obstructive, I would prefer e mail or written communication as I then have a record of the conversation/discussion.


Mike. 17.01.05.


The reason I was calling you was to ask if you would mind sending me a copy of your letter dated 17th November. This is because your letter came into the office during the period of me taking over as Chief Exec. and has been misplaced.

I will respond personally quickly to your letter.

Steve 18.01.05.


Hello Mr Lowden.

Why am I not surprised. I'll send you a copy of the letter in the next couple of days. I will appreciate your swift response in the circumstances.

Mike. 18.01.05.


Dear Mr Cox

Serious hazards to Volunteers in PPI

I am writing further to your e-mail correspondence dated 29th November and I apologise for the delay in replying. I will address the issues in the order you have raised them.

I would like to advise you that the statement you have made regarding Quangos is mistaken. The Commission for Patient and Public Involvement in Health is, as a matter of policy, committed to the Nolan Principles of Public Life and has to comply to national standards as do all other Non Departmental Public Bodies.

The Commission has powers to end the appointment of members of Forums under certain circumstances. These powers are the basis of the Standards of Conduct Policy which has been developed to ensure that action is taken which is fair, proportionate and appropriate if Members do not meet the appropriate standards. At both the informal and formal stage of this policy members are given the opportunity to address the concerns that have been raised against them and throughout all stages of this policy members are entitled to be accompanied by a friend, colleague or independent advocate not acting in a legal capacity. In all circumstances the Commission makes every effort to resolve concerns in the informal stage of the policy, however if this is not possible because the matter is too serious a formal investigation will take place.

A member has the right to appeal to any standards of conduct penalty imposed however the decision of the Appeal Panel will be final. Members are able to take issues to the Ombudsman if they are in relation to the Commissions policies and procedures.

The Commission is an organisation that actively promotes inclusiveness and always makes every effort to ensure that all are able to access our support at all times. You have acknowledged receipt of letters sent by Brenda Cook on the 16th February, Steve Hilton on the 24th March and Laura McMurtrie on the 5th April confirming that this unfortunate incident was a matter of miscommunication rather than discrimination. I am pleased to note that in your letter dated 1 1th April you thanked Laura McMurtrie for her positive tone regarding this issue and assurance that measures were put in place to avoid a similar occurrence in the future.

The Commission is not the central agency responsible for examining the future governance arrangements that will apply to Patient and Public Involvement Forums; this is the responsibility of the Department of Health.

However you may appreciate that given the commitment of Commissioners and staff to the future of patient and public involvement there is considerable concern to ensure that the future design and delivery system is fit for purpose. The experience the Commission has built-up in developing and supporting Forums is critical and as a result the Department of Health recognises the Commission's important role in informing the consultation process. To give you the opportunity to respond to the consultation process I enclose the questionnaire and other relevant information.

Yours sincerely

Fiona Wood
Director of Operations and PPI (South) 18.01.05.


Hello Mike,
In the circumstances I will respond very quickly. (I am assuming you cannot send the letter by email?)
steve 19.01.05.


Hello Mr Lowden.

I have attached the letter and its enclosures. Please note that Mr Wells (despite the instruction to direct complaints to him in the document entitled Future Support Arrangements for PPI Forums dated 04.11.04. and signed by you and Meredith Vivian) said he had passed my letter of complaint to him of 17.11.04. to yourselves on 19.11.04. asserting that CPPIH shouild deal with such complaints. I have had no response from either letter.

You will see a reference in the last paragraph of my letter to Mr Wells to the absence of consultation with service user and carer organisations and to the Long Term Medical Conditions Alliance in particular. I have since had confirmation of what I said: David Pink, Chief Executive, Long-term Medical Conditions Alliance told me on 19.12.04.: - I am sorry that we have little or no say in the current CPPIH and PPI Forum arrangements.

To be inclusive, I have also attached my e mail of 29.11.04. to several organisations including CPPIH as a doc file (please excuse me if the page format is messy - I use a Mac and have translated it for your convenience). I have done this because I received a letter this morning dated 18.01.05. from Fiona Woods in reply to that e mail (I trust you will have access to her letter) and I am dismayed by the evasiveness and denial of facts in her letter (which in themselves could be construed as breaches of Nolan standards. I will be responding to it in detail.

I am assuming your contact with me is in response to my e mail to CPPIH of 21.12.04. but perhaps you could confirm that. I am copying this correspondence to my constituency MP.

I'll look forward to your comments with interest.

Yours sincerely.

Mike Cox. 19.01.05.


Thank you for emailing me these documents. Need to read carefully tonight.

Steve 19.01.05.


Hello Mr Bacon.

To keep you informed I have copied recent e mail correspondence with Steve Lowden of CPPIH below. You already have copies of the attachments I sent him so I have omitted them here.

Yours sincerely.

Mike Cox. 19.01.05.


Dear Fiona Wood.

Ref: Reply to your letter to me of 18.01.05. with particular relevance in
the Year of the Volunteer

I am responding to your letter paragraph by paragraph, in order, except for the first.

Your 2nd paragraph: “Holders of public office are accountable for their decisions and actions to the public.....” (‘Standards in Public Life’, July 1997 - my italics).
CPPIH’s existence has been characterised by lashings of fine words, fine words that have turned out to have very little substance. I am, of course, very familiar with your stated policy around commitment to the Nolan Principles of Public Life. Stated policy however, is far removed from the real life observance of those principles and I am just as familiar with CPPIH’s many breaches of Nolan Principles (as are others I have been in contact with over the past 14 months).
Research into this has evidenced the absence of any practicable means by which CPPIH can be held publicly accountable for those breaches. Yes, I know there is, on paper, the option to refer problems to the ‘parent body’ (DH) and then to the Secretary of State - this has been done but the Secretary of State has merely referred the matter back to CPPIH. This is patently unsatisfactory circular incestuousness. The perversity of that mechanism is recognised in most aspects of public life by having either an independent regulatory body (e.g. the Healthcare Commission for NHS organisations; the Standards Board for those elected to public office) or a means of scrutiny by an Ombudsman.
Anthony Gilmour, Jurisdiction Advisor, Office of the Parliamentary and Health Service Ombudsman, is clear about the position: “...we can look at complaints against almost all executive NDPBs, and some advisory ones, under the Parliamentary Commissioner Act 1967, that is, complaints from members of the public that maladministration by those bodies has caused them an injustice; .....None of that is the same as bringing "issues around Nolan standards in executive NDPBs" within our remit. This Office deals with complaints that official error has affected members of the public in some way. There is some overlap with the kinds of thing dealt with in the Committee's reports and summarized in their "Seven Principles of Public Life". But the Committee's concerns have largely been about matters which could hardly be covered by us.”
Another possible route to hold NDPBs accountable is the government proposal in their 1998 paper ‘Quangos : Opening the Doors’ in which they proposed that Parliamentary Select Committees should take a more active and systematic role in the scrutiny of NDPBs. This is currently being tested through a request by my constituency MP to the Chair of the Parliamentary Select Committee on Health that they inquire into the several anomalies surrounding the governance of PPI, including breaches of Nolan Standards by CPPIH. It does not look likely however, as a similar request by another person has just been discounted.
You say: “I would like to advise you that the statement you have made regarding Quangos is mistaken” The facts say otherwise, especially with regard to CPPIH. At present there are no available means by which “Holders of public office” in CPPIH are “accountable for their decisions and actions to the public - as, for instance, local councillors or Members of Parliament, or NHS bodies are (via the Healthcare Commission). ” By definition, this, in itself, is a breach of Nolan Principles.

Your third paragraph:
This could be a positive and reasonable statement made by a competent corporate manager - if it referred, as it is designed to, to employees. But it doesn’t, does it! No, CPPIH tries to squeeze VOLUNTEERS into a policy borrowed from corporate employment and one totally inappropriate to their civil and human rights. Volunteers are people who, of their own volition, give their time and goodwill to your organisation and the community to help, free of charge. An employee subject to your Standards of Conduct Policy would have effective access to resources to balance out the impact of the power of a corporate institution descending on them and would have some protection through employment law, health and safety law, disability discrimination law and laws of contract - and independent resources, such as a trade union, through which they could mount a fair defence. And they would have a clear means of independent appeal. Ultimately they would have access to an Employment Tribunal. Volunteers have none of this - they are naked in the face of your corporate power and they may be so affected as to be afraid to even speak to a friend.
Worse, your volunteers probably include a majority of people who are themselves users of the National Health Service; some of whom will be extremely sensitive and vulnerable. They may be completely unfamiliar with mechanisms of corporate managerialism, taking its imposition as an affront. Their reactions to the activation of your bureaucratic Standards of Conduct could be grossly disproportionate to what you might managerially perceive as good intentions. A person predisposed to depression could end up in hospital; a person with fragile self esteem could be set back years; a person frail from chronic illness but in recession could be decimated by the stress. And let me remind you, these people have given their time and goodwill freely to assist you - that is the worst kind of exploitation.
Let me use an example well known to me. A service user with many years experience in service user (your term patient) involvement who, since the early 1990s, had made a huge contribution to the establishment of local self help groups and advocacy services joined a PPI Forum. An experienced and knowledgeable voice in service user (patient) involvement well before CPPIH was even thought of, early on in 2004 he began, naturally, to enthusiastically build on his local knowledge and contacts to further the PPI “mapping” exercise.
Out of the blue he received a letter telling him a complaint had been made against him and offering him an informal interview. There were several strands to this complaint, most, if not all (I’m writing this from memory of my sight of the list), were that he had made contact with NHS services without the consent of the PPI Forum, and of course the Chair. My own opinion about this, and I must stress it is my opinion and not his - he thinks it was the FSO, is that the complaint against him was made by a person who found his knowledge, experience and outspokenness too challenging and was using the complaints system to try to get rid of him. There were indeed many others including myself, who were, at the time, doing the same thing (reaffirming existing contacts and indeed, establishing new ones while CPPIH was sitting back doing nothing - and lying to us about why they were doing nothing).
The receipt of the complaint floored him - he was bewildered as to why there was a complaint about him doing the same work he had done for years, he was very angry at what he rightly saw as a gross injustice and he was seriously affronted at his character being besmirched by these accusations. His response to the invitation to informal discussion was “Why should I subject myself to this - I know I’ve done nothing wrong, I’ve offered to help them with this work as a volunteer out of my own goodwill and I’m certainly not playing their games.” There followed a switchback of actions by him - a result of the confusion and anger at the accusation. He was suspended and all the weasel words about suspension being neutral made no difference to his distress - suspension is only neutral in the eyes of the imposer. This shortly led to his resignation which under the bureaucratic rules meant he could no longer follow up trying to rebuff the injustice and arrive at a remedy. Frustration upon frustration. What a way to treat someone who had generously worked voluntarily to help further Patient and Public Involvement in Health!
He pursued the issues outside the confines of CPPIH’s “fair, proportionate and appropriate” policies including the involvement of his constituency MP but soon came up against insurmountable barriers: finding that the Parliamentary Ombudsman could not look at his case because it involved “personnel matters” for instance.
The evidence then is that in trying to superimpose what are essentially employer/employee processes onto a voluntary superstructure and apply those processes to volunteers is wrongheaded and IMHO a clear breach of Article 6 of the European Convention of Human Rights.

Your paragraph 4. This is simply duplicitous: there is no independent appeal system. Members cannot take issues to the Ombudsman (as you have misinformed them they can in several of your letters) if the policies and procedures relate to “personnel matters”.

Your paragraph 5
. The correspondence with Steve Hilton first. This exchange was about two articles I had written and nothing to do with the issue of disability discrimination on CPPIH’s part. I don’t know if your intention was to try to blur matters by referring to it. Incidentally though, it is interesting that elements of the correspondence with Steve Hilton revealed that by the end of April 04, 662 PPI volunteers had resigned - indicative of CPPIH success? And on 25th March he admitted that forums were not “functioning” in place of CHCs as had been claimed by CPPIH propaganda in January but were engaged in activities preparatory to “functioning”. Steve said: “Given more time and continuing training and guidance from us, they will be fully functioning.”
As you well know since you obviously have the correspondence, Brenda Cook’s letter of 16th February was, for me, less than satisfactory. In my second stage complaint letter of 20th February to Sharon Grant (the complaint was about CPPIH’s discriminatory action and Brenda Cook’s letter I found too officious in tone, rationalising CPPIH’s actions and not satisfactorily dealing with the discrimination) I pointed out that the enclosed copy of Brenda Cook’s letter: “...contains her response to my letter of 5th February (which was to do with entirely separate CPPIH anomalies - my parenthesis). The brief response to the disability discrimination is in her paragraph six.” In a parallel letter to Brenda Cook on 20th February I said: “I found your response to the discriminatory omissions at the UEA Sportspark on 5th February much less than satisfactory and I have made a formal complaint to the CPPIH Chair.”
My letter to Laura McMurtie of 11th April I did indeed say: “Thank you for your positive tone and the most important assurance that you have put measures in place to avoid similar occurrences.” That comment was in comparison to Brenda Cook’s response.
I did start the letter to Laura McMurtie with: “Thank you for your letter of 5th April, 2004. The response is appreciated but we do have a divergence of opinion in that however inadvertent the CPPIH actions were, what occurred was still, in effect, discrimination.”`In that letter I also made the important point that reflection on the circumstances told me CPPIH’s actions were not so inadvertent: I should not have entered discussions with the person who phoned me to tell me CPPIH could do nothing to accommodate my disability but should have pointed out there and then his statement was discriminatory. As an employer CPPIH would have had a legal duty to make reasonable adjustments; because I was a volunteer they could refuse to and get away with it. I concluded that letter by saying: “This particular matter though, for me, is at an end.” However, it important to note it cannot be at an end as a national issue and just as importantly as a national issue, as a volunteer I could not have taken it any further if I had wanted to!

Your paragraph 6. On 18th December 04, Steve Wells of the Department of Health said: “I received your letter on 19 November and forwarded it to the Commission on Public and Patient Involvement in Health for response. They are managing the consultation process, and responding to all correspondence, including complaints.” (my emboldening). Looks like bureaucratic badminton!

Your paragraph 7. I have already submitted a hard copy questionnaire which I had considerable difficulty obtaining because, as Opinion Leader Research eventually admitted, the online form would not work for me because I use a Mac! I pointed out elsewhere that this neatly excluded a sizeable chunk of the population from the consultation as people less interested and involved than me would have given up there. I already have all the information you enclosed and I have returned this and the form with this letter.

I am grateful for your letter because it has provided an opportunity to expose an example of how CPPIH trots out misinformation in the form of facile propagandist statements and their tendency to rationalise their very many anomalies. If CPPIH really was “...committed to the Nolan Principles of Public Life...” they would have acknowledged and learnt from their shortcomings selflessly with integrity, instead of covering things up; they would be properly accountable for their decisions and actions to the public , instead of installing a system of incestuous self-inspection which effectively precludes independent scrutiny; they would hold consultations openly, instead of holding mainly segregated (even segregated between FSOs and Forum members) meetings to which the public is excluded, and instead of with holding information from their own volunteer Forum members; they would have conducted their affairs honestly, instead of broadcasting propagandist misinformation such as that issued at the beginning of 2004 claiming the statutory seven members for every Forum and those PPI Forums being functioning in place of CHCs at that time, and instead of being less than honest with their own volunteer Forum members; and they would have ensured leadership to really practice Nolan Standards and to be prepared to learn from those organisations with years of existing knowledge and skills in service user and carer involvement in health, instead of arrogantly setting their face against them.

I must add something here about that last sentence. I have long been puzzled, and still am, about why CPPIH turns its back on the vast pool of existing expertise in service user (patient) and carer involvement in health. Organisations such as the Long term Medical Conditions Alliance, MIND, Scope, rethink, MENCAP, Shaping Our Lives, MACA, even the other Quango, NIMHE etc, etc, all have years of experience in this field yet they appear to have been ignored and even actively avoided by CPPIH. Why? Is it perhaps some tacit government strategy? Is it that CPPIH appears to be predominantly staffed by healthcare professionals and administrators who have a cultural tendency to ‘top down’ prescriptive practice (this would also explain CPPIH ignorance and insensitivity when dealing with service user PPI members) and an aversion to service user and carer (as distinct from “patient”) involvement? I really don’t know but would be delighted to be enlightened.

Perhaps one of the worst aspects of CPPIH failure is that the Parliamentary controversy over the abolition of CHCs has proved well founded. I am aware there was a large group of MPs who retained a special interest in this and can only hope that interest remains or can be reawakened.

I’ll finish this with some suggestions in the interests of a positive view of the future:

  • CPPIH should be dismantled immediately and interim governance set up. CPPIH have, unfortunately, developed a dysfunctional culture which is in denial about its shortcomings. This will be resistant to change and while it continues, it will do more damage to the valuable concept of PPI.

  • The NHS Appointments Commission should take over personnel matters immediately. This is an NHS body and will, presumably, come under the scrutiny remit of the Healthcare Commission so improving accountability at a stroke.

  • There should be urgent measures developed to ensure volunteers are not treated as employees. In the meantime, all PPI members should be clearly informed about the absence of their rights under disciplinary measures

  • The ALB consultation should quickly include strong links with those service user and carer organisations with established expertise.

  • The ALB consultation should open itself up to proper public consultation, with a programme of local public and integrated workshops.

  • The PPI governing body should be brought under the remit of the Standards Commission.

  • There should be an amendment to the Disability Discrimination Bill currently going through Parliament to bring volunteers into the legislation.

  • The Parliamentary Select Committee on Health should be required to exercise regular scrutiny of the PPI governing body and should be required to take referrals and complaints from members of PPI and the public.

  • The Public Interest Disclosure Act should be amended to include volunteers.

  • The PPI governing body should urgently develop a whistleblowing policy for PPI.

Yours sincerely.

Mike Cox.

c.c. Meredith Vivian, DH; Richard Bacon MP; Paul Donahoe, CSV; Steve Barnes, Secretariat Co-ordinator, Committee on Standards in Public Life; Steve Lowden, CPPIH; The Editor, Community Care.


Hello Mr Lowden.

Thank you for your letter. I had already submitted the reorganisation document to Meredith Vivian. There is much that is important that has been omitted from the debate because of your very limited consultations
with the general public, including service users and carers, in the ALB review. I will await your report with interest.

In the meantime you will shortly receive a copy of my reply to Fiona Wood by post. I hope you will give this your full attention.


Mike. 25.01.05.


Hello Mr Lowden.

Without wishing to be critical or confrontational, on 04.01.05. I sent you the attached letter (Appleworks 6 file) asking for information under the Freedom of Information Act and have heard nothing.

I have also still heard nothing from you about my formal complaint about the consultation process (made initially to Steve Wells of DH on 17.11.04. and which he forwarded to you for action).

Could you please respond.


Mike Cox. 01.02.05.


Dear Mr Cox

I am writing in reply to your letter of the 20th of January. I have noted your observations about limitations of public accountability mechanisms in relation to NDPBs and the actions you feel should be set in place.

You have raised a number of valid points about our Standards of Conduct Policy and we are embarking on a review of our approach to its implementation. I have made your comments available to the team undertaking this review and they will be considered along with others that we have received. We are mindful that some members have found the process of our Standards of Conduct policy difficult to participate in and that in some cases despite our best intentions it has caused anxiety.

Thank you for taking the time to participate in the consultation process. I am sorry that you found the on-line system was difficult to use with your PC. There has been a phenomenal response to the consultation from Forum members. We expect the Minister to make an announcement during the later part of February about the new arrangements in the light of the consultation.

In relation to your suggestions:

* CPPIH was established by primary legislation arid requires primary legislation to be abolished. The earliest this can be achieved is August 2006. However as we move through the transition process some of the new arrangements will be enacted before that date subject to the formalities required to transfer responsibilities between statutory bodies, e.g. the NHS Appointment Commission.

* We are reviewing the operation of the Standards of Conduct policy in the light of experience and feedback and will take into account your comments including the suggestion of a whistle-blowing policy.

* A wide range of user organisations have been asked for their views as part of the consultation and CPPIH continues to network and work jointly with a number of such organisations e.g. MIND, NIME, SCOPE.
As you recognise, the wider issue about legislative change that you propose are not within our remit but I note your letter has been copied widely including to our sponsor Department, the Department of Health.

Yours sincerely

Fiona Wood
Director of Operations & PPI (South) 02.02.05.

cc Meredith Vivian
Richard Bacon MP
Brenda Cook
Bernadette Beckett


Dear Mr Cox

Further to your request under the Freedom of Information Act 2000 (the Act), I set out the responses to your queries below, in the order that you raised them:

1. the number of people who have resigned from PPI Forum membership since 01.12.2003 is 1333;

2. the number of PPI Forum members who have been subject to procedures being taken by CPPIH under the Standards of Conduct Policy since 01.12.2003 is 52;

3. the number of PPI Forum members since 01.12.2003, who have been dismissed as a result of the Standards of Conduct procedures taken by CPPIH is 3;

4. the number of PPI Forum members, since 01.12.2003, who have resigned as a result of the Standards of Conduct procedures taken by CPPIH is 12;

5. Since 01.12.2003, the number of PPI Forum members have made a
complaint to CPPIH that they have been subject to discriminatory actions or
behaviours is 12.

You may request that the Commission review this response, and if not satisfied with its subsequent reply, may contact the Information Commissioner's Office should you wish to complain about the Commission's response to your request under the Act.

Yours sincerely

Lorain Rawlins
Operations and PPI Governance Manager 03.02.05.


Hello Mr Lowden.

Thank you for your letter of 31.01.05. and my thanks to Lorain Rawlins for her letter of 01.02.05. with the information I requested.

I still have reservations about the consultation process, the main concerns being the absence of public meetings and the segregation of forum members and FSOs (to be trite: divide and rule?), I think the latter strategy was one that undermined PPI volunteers from the start. However, that is now history and I think the next important stage will be the publication of the consultation results and your report. Hopefully, these will be widely known and available to the public. I do have a copy of your letter to forum members of 17.01.05. in which you say: We are hoping to make the results and the Department of Health's formal response to the consultation exercise available at the end of February. Again, hopefully, those results will also be available to the public simultaneously and not just for internal consumption.

Although your letter of 17.01.05. isn't exactly secret, in the name of openness, can I please suggest you publish these communications on your website in future. And, as an interested member of the public, can I please ask you to include me in any local consultation meetings about the operation of PPI in the future.




to the Healthcare Commission - Hello.

Sorry, I wasn't asking if the NHS Appointments Commission is PART of the Healthcare Commission.

Let me explain further. As you say: ...the Health and Social Care (Community Health and Standards) Act 2003... says HC has a duty to: assess the management, provision and quality of NHS healthcare (including public health)..........consider complaints about NHS organisations that the organisations themselves have not resolved........carry out investigations of serious failures in the provision of healthcare...

My question is: Does the NHS Appointments Commission fall within the definition of a NHS organisation for these purposes?

The point of my question is that the Commission for Patient and Public Involvement in Health currently appoints volunteer members of PPI Forums. CPPIH, as a Quango, has no effective lines of external accountability - there are no means of scrutiny by an independent body such as yourselves. However, the functions of the appointment of PPI members are soon to be transferred to the NHS Appointments Commission as part of John Reid's ALB review. If the appointments commission is defined as a NHS organisation for your purposes, there will be some improvement in accountability for PPI.

Thank you for your attention.

Mike Cox. 04.02.05.


to Rosie Winterton 09.02.05.


The above is apparent when reading your letter of 12 January addressed to my constituency MP, Bob Blizzard, who is presently convalescing after orthopaedic surgery following a fail in the House of Commons, in early January Both Bob and myself are keen to correct the serious inaccuracies that were supplied to your officials when contacting CPPIH on my behalf Considering Bob's current posit ion I considered it necessary in light of the forthcoming ALB report to breach parliamentary protocol to quickly disabuse you of such errors, by providing the correction necessary.

initially, within Stage Three of their CompIaints Policy, appellants were improperly directed to the Parliamentary Ombudsman Last November, however, her Office wrote to the Commission pointing out the difficulties arising from such action and recommended discontinuation of the practice. Such advice was ignored and senior officials have continued to direct inappropriately to the present as in the case of your officials. (see attachment). PPI Forum members, regrettably have been made victim of serious discrimination in being made subject to a separate Standard of Conduct and Procedures Policy whicb permits appeal to 1,0 external independent body.

in recommending my having recourse to judicial review to seek redress is indicative diat your officials are unaware of the exact nature of my position, Tn March of last year [questioned CPPJH, informally as to why they were not conforming to the requirements of their empowerruent Act, in respect of Fforum membership recruitment. The Commission responded by proceeding against me via Standard of Conduct Policy, citing that I had brought my Forum into disrepute. My counter, to make formal my original claim against CPPIH via Complaints Policy was immediately subordinated and [was never given opportunity to defend my position. As your letter mentions twice, CPPIH are independent of any regulative bady and are totally unaccountable Enclosed both policies for comparative purposes

With regard to the Commission's assertion that "alt Forum members are subject to CRB checks" this is inaccurate. In the first instance CPPIH failed to include the proviso for all Fforum members to be made subject to CRB checks. This grave omission was brought to their attention at the instigation of another tormer Forum member, Mike Cox, via the good offices of his constituency member, Richard Bacon, MP for South Norfolk,. A partial remedy only, however, was secured according to Meredith Vivian Head of Patient and Public Involvement D of H, who informs that currently file CRB check requirement has only been introduced as a pilot scheme, operating only within certain selected areas.

As I am greatly concerned that your officials have never had the benefit of an external view of the Commissions activities. Enclosed therefore, are contributions from two former Forum mem bers and a former Member of Parliament to provide a better perspective both for yourself and your officials.

I hope the foregoing is useful.

Yours respectfully.

John Fearn.


to UNISON - Hello.

Especially in the Year of the Volunteer we forget that volunteers still have no rights under disability discrimination law and organisations like the Commission for Patient and Public Involvement in Health can discriminate against (and have discriminated against) volunteer members of PPI Forums, and get away scot free with it.

In fact, although no one is taking a blind bit of notice of it, CPPIH also have a raw deal for their volunteers in that they operate a disciplinary process, borrowed from the world of paid work, in which the volunteers have no rights of independent defence, no independent body (such as a trade union) to represent them, and no means of independent appeal. Paid workers have contractual rights, trade union help, advice, support and representation, and the right to refer to an employment tribunal. Volunteers have nothing.

Worse, organisations like CPPIH that use and rely on (and indeed exploit) volunteers are not in any practicable sense answerable for their incompetence and maltreatment of volunteers because they are Quangos. CPPIH will say people can refer to their "parent body", the Department of Health and to the Secretary of State but all that happens when this is tried is the matter referred back to CPPIH for attention! CPPIH will also point out that ultimately a complaint can be made to the Parliamentary Commissioner - but here's the catch 22: the Parliamentary Commissioner cannot deal with "personnel matters" and CPPIH volunteers come under "personnel matters".

Should you be supporting the Year of the Volunteer while such Dickensian conditions prevail?

Mike Cox.
Member No. 1065651 11.02.05.


to the Committee on Standards in Public Life - Hello Mr Jarvis.

Many thanks for your letter. Your response and actions are more than I had hoped for - I had no intention of seeking an investigation into an individual case and sent the copies to you looking to raise the Committee's consciousness about the anomalies.

And thank you for the copy of the Tenth Report summary. I will look at the full report.

Yours sincerely.

Mike Cox,
The views, values and statements expressed here are entirely my own and, unless stated otherwise, have nothing to do with any other individual or organisation. In particular, my views values and statements have nothing to do with any political party. 12.02.05.



17th February, 2005.

Regional Customer Services Officer,
East of England Region,
Ground Floor Block 7,
The Westbrook Centre,
Milton Road,
CB4 1YG.

Dear Customer Services Officer.

Formal Complaint.

In the past ten days, information has come to my notice which consolidates concerns I had about the PPI Forum for Health in Waveney earlier last year. Those initial concerns arose from my own observations of the circumstances and I had no evidence to back them at the time. I would like to make it clear that this complaint arises from the new information, although I understand that the elements which gave rise to my original concerns remain the same. My complaint is in two parts.
1st Part: During attendance at a public meeting of the PPI Forum for Health in Waveney in the summer of last year, I found myself uncomfortable with the way the Chair of the Forum, Dr Jean Macheath, seemed to be dictating the content of the Forum’s discussions, angling everything towards her own agenda. She also made statements indicating she had interests in other organisations, particulary a local learning disabilities trust, which could give rise to conflicts of interest with PPI. Her name seemed familiar but I was unable to place it at the time.
While looking through some unconnected filed papers last week, I came across some notes of mine of an interview with a Waveney PCT officer in January 2003. The interview was for an article around the initiation of PALS arrangements in local NHS trusts. My interviewee told me that a Dr Jean Macheath was working at the Patrick Stead Hospital in Halesworth laying down the Waveney preparations for the forthcoming PPI Forums.
On Tuesday of this week, Mr John Fearn told me Dr Jean Macheath was a Non Executive Director of the Local Health Partnerships NHS Trust when she was appointed as a PPI Trust member and remained so when she “took over and appointed herself Chair” of the PPI Forum for Health in Waveney. Mr Fearn also tells me there having been a restructuring, she is now a Non Executive Director of the Suffolk Mental Health Partnership (NHS) Trust.
Additionally, I am told that Dr Macheath is a Podiatrist/Chiropodist and I cannot avoid the conjecture that she may be still in some form of practice in this area, if only as a locum. That would amount to her having a pecuniary interest in PPI.
All of this above appears to me not only to be a very shaky arrangement under the Standards of Public Life principles pertaining to conflicts of interest, it also suggest Dr Macheath was given preferential treatment in her PPI appointment and her swift assumption of Forum Chair. More seriously, it appears to be a breach of Statutory Instrument 2003 No. 2123, The Patient’s Forums (Membership and Procedure) Regulations Clause 4 (1) (e).

2nd Part:
Mr Fearn
tells me that early in 2004 (he has the exact date) he visited your offices in Cambridge and spoke to Bernadette Beckett informing her of the position regarding Dr Macheath. Mr Fearn says the matter was lightly dismissed by Ms Beckett and when he later contacted your office about the issue he was told Ms Beckett had kept no record of the interview.
Shortly after this, Mr Fearn, out of the blue, received a communication from CPPIH detailing reasons for a complaint against him. I have looked at the details of this complaint and consider them trivial and spurious as they arise from enthusiasm for PPI. I can, indeed, bear witness to other early Forum volunteers, including myself, behaving in a similar manner. None of these have been the subject of a like complaint so why was Mr Fearn singled out?
Although I am unable to make any direct allegations, thirty years’ knowledge and experience of how corporate cultures can work tell me events like this are sometimes not mere coincidence. Given the facts in part 1 of this complaint I think an investigation is called for. What I do consider to be undoubted maladministration is Bernadette Beckett’s facile dismissal of a serious matter and her obfuscation by not recording the interview. I understand that Mr Fearn was later told the interview was not recorded because it was an informal meeting. My opinion about this is that Ms Beckett’s position and the seriousness of the information laid before her makes a nonsense of that excuse.
Following your investigation, perhaps Mr Fearn and I could meet with a senior officer(s) to discuss the matters. I would reserve the right to record such a meeting.

Yours sincerely.

Mike Cox.

I give my permission for Mike Cox to act as my representative in these matters and I endorse the contents of this complaint.

signed: date:

c.c. Richard Bacon M.P., Bob Blizzard M.P.



Hello Mr Rathfelder.

I have just read your article for Public Health News, having been pointed in that direction by Phillippa Yeeles of INVOLVE.

I've been campaigning for a democratic and full accountable structure for PPI since Dec 2003, having had a special interest in service user involvement in health for thirty years and an interest in the developing concept of PPI since the late 1990s. Like you I believe the government and CPPIH have practically wrecked what is fundamentally a very positive development and like you I believed the abolition of CPPIH presented an opportunity for it to be replaced by a democratic body which involved service users itself and was fully and properly publically accountable.

I have written a fair amount about the anomalies and what I think should be done to correct them (you are welcome to copies if you are interested) and have corresponded quite a bit with Harry Cayton, Meredith Vivian, Fiona McMurtrie and Steve Lowden but it seems to me similar to corresponding with a camel which has buried its head in a wet sponge. Responses are anodyne rationalisations with some denial of the facts. I've just had a long propagandist letter from Rosie Winterton (via my constituency MP) again, denying there are any shortcomings.

I'm in the process of building a website with the purpose of setting up an independent watchdog site for PPI - the main aim is to try to collate the various accounts of those very many volunteers who have been dissatisfied with CPPIH (at 01.02.05 there had been 1333 resignations from PPI Forums since Dec 2003). I would like your permission to put in a link to your Patient Power article if at all possible.

For your information I have copied below, a statement I sent to various organisations at the end of last year.


Mike Cox, 19.02.05.


“Where’s the evidence” has been a regular cry from DoH and the CPPIH executive when I’ve pointed out their mismanagement, incompetence and equivocation.
Well. Apart from the evidence of my own experiences, there can hardly be clearer evidence of the wreckage created by CPPIH and DoH than that contained in the results of the Arms Length Body review consultation published on the DoH website.
The following is a catalogue of quotations from the various countrywide responses to that consultation. Where the source is “Forum member”, these are each different individuals from different parts of England. The list constitutes widespread condemnation on a scale that resembles the recent ‘tax credits debacle.


Hampshire County Council's Health Overview and Scrutiny Committee:

"Our experience of working with the Patients' Forums suggests that CPPIH has not been effective in enabling the Forums to operate in a supportive environment. Forfum Support Organisations have been variable in their performance and the regional offices of CPPIH seem to have imposed a bureaucratic burden that inhibits rather than supports the activities of the Forums."
"....it is of concern that, some 14 months after the establishment, the training to Forum members seems to be so limited."

The body responsible for health scrutiny in Cumbria:

"The Committee is concerned that the current level of resources available to make PPIs effective in carying out these vital roles has been significantly inadequate,...."
"When this Council (CHC) was abolished it was to be replaced by the CPPIH Forums but these took a long time to become established."
"...Forums are very small and isolated. Their members are volunteers with limited time to spare. They have been given no brief, no agenda and thedir activities are uncoordinated. It is as though the intention was to divide and rule and to ensure that the Forums would be rendered completely ineffectual and this has proved to be the case."
"...the structure of CPPIH was (sic) amorphous and its objectives were not spelled out in any meaningful way for Forum members."
"....there appears to be a complete lack of direction from the top and no attempt to co-ordinate the various elements of the organisation."

Letter to Daily Telegraph: 14.09.04.

"It has been one of the most distressing and worthless activities in which I have ever been engaged."
"...the commission appears to squander the skills, qualifications, time, energy and enthusiasm of those who are voluntarily working for it."
"The whole valuable exercise appears to have been mismanaged..."

Forum member:

"I had hoped to learn something that would help me in my work as a forum member (at an ALB discussion). What I learned was not helpful. it tended to confirm my suspicions that we - the members of the public who gave our time to improving the health services through the PPIH Forums - are being manipulated for undeclared political purposes."

Forum member:

"I expressed them (concerns) in a paper sent to the Head of Eastern Region PPIC several times without even acknowledgement."

A London Forum:

"....they are services that need to be truly reflective of the needs of all communities, whether those communities be established, recognised and empowered or whether they be hidden, hard to reach or excluded and they are services that we need to be consulted upon, conferred with and where our voice(s) must be considered and acted upon."

A Suffolk forum:

"Not enough planning on how the manning levels of the Forums were to be maintained..."
"FSOs not trained, skilled or dedicated to provide the back up a group of voluntary public spirited people need..."

Forum member:

"Nearly a year later the reality is very different: few, if any, Forums have even ten members, and several are 'dysfunctional'..."
"There is wide dissatisfaction with the performance of some FSOs."
"Talking to other Forum members it is clear that the major issues are accountability and transparency..."

GPG (a person’s initials):

"The DoH should take the opportunity....to promote a 'bottom-up' approach to PPI, which is surely the fundamental and original concept."

A Southwark forum member:

".....if staff are being employed who have not got the necessary levels of skill to take down accurate records ....then public money is being wasted and that is wrong."

Sussex Downs and Weald PPI Forum:

"....we recognised the need for a truly independent voice speaking on behalf of patients and a wider public on local health issues."
"if the PPI Fforums are to continue to be seen as the local champions for informed public debate on local health service delivery, then they need to be made up of people who accurately reflect the views of their communities, and not those who might happen to fit a particular 'profile'."

A Harlow Forum:

"....members need to be assured that they are being listened to and some attention will be given to their grievances and complaints. This does not hapopen in the in the present bureaucratic NHS."

A York Forum:

"I find any arguments for these impediments (the ALB changes) specious if not insulting to towards voluntary unpaid members of the public offering to give of their time freely...."
"We still do not have access to the things we need to do our work properly."

Forum member:

"..... we are of the opinion that the earlier we are free from the encumbrance of the Commission and the service organisation, the better."
"The Chief Executive (of CPPIH) claims a proud record for the Commission. We regard the record as one of dismal failure and gross incompetence."

Forum member:

"members need to feel that they are doing a worthwhile job and the time they are giving is not wasted just listening to what paid professionals have already decided what to do."

Forum member:

" Ever since joining the forum i have been extremely concerned about the structure of the CPPIH and its inherent inability to achieve. I have made representations to CPPIH (unacknowledged), publiched criticisms of the organisation and made representations to my MP...there were many protestations about the rightness and systems of CPPIH prior to its launch and abject failure to achieve!"
"Like many others, we were appointed after superficial telephone interviews...."
"I was equally appalled (sic) at your unwarranted dismissal of one of our most enthusiastic and useful members"
"I am sorry to leave my Forum Chair and colleagues further depleted in number. They are nice people and deserve a better system."

Forum member:

"Forums need to have members from the whole range of diversity and hard to reach groups. Identifying and recruiting such people is so very different from the field in which the Commission has been working."

AvMA (Association against Medical Accidents):

"We understand that just as with the decision to abolish CHCs, there is to be no consultation with the public or patients about the decision to abolish CPPIH. AvMA remains convinced of the need for an independent national body to support patients forums and represent views nationally."

Forum member:

"I thought forums made their own agenda but there are workshops being set up that guide forums into specific medical areas."

A cancer group co-ordinator from Morcombe Bay:

"How PPI forums are recruited now:- from my experience not very satisfactory. I received several confusing phone calls....They (local facilitators) stated appointments had not been handled very well due to using temporary part time staff."

Uttlesford PPI Forum:

"....the surprise - not to say the mystification - with which we.....gazed upon the proposed structure of the CPPIH...but... we decided to jump in. But, to quote Mark Anthony, Oh what a fall was there my countrymen!!! And what bewilderment and mistrust quickly began to develop." "The clerical/admin support, necessary to the efficient running of such a group was either inefficient or non-existent." "To sum up this section - we believe the structure is not only incorrect but in some ways inimical to the work we had hoped to do."

And their Chair to their MP:

"My PPIH Forum members have asked that I send a copy of this letter to you for your information and perhaps some action. We feel strongly that if something pretty fundamental is not done with regard to this most imporobable structure the people of Uttlesford, which of course contains your own constituency will never achieve the full benefits of adequate consultation and representation which they deserve."

And from their MP:

"I recognise that CHCs may not have been perfect, but it does now seem clear that insufficient thought has been put into the arrangements to succeed them. They seem at the same time to be vague and over-complicated."

A self advocacy group for people with learning disabilities:

"We have had some problems in trying to become a member...." "We have been put in touch with a lady........who is willing to do a face to face interview with our member but that was two months ago and we still haven't managed to set a date." "What i am really trying to say is that the whole process has been made very difficult for people with learning disabilities to take part in, even with the support of a self advocacy group behind them."

A forum chair from Harrogate:

"My simplified comment about the forums is that they have in fact been set up to fail." "There has been virtually no training for anybody. People have simply been thrown in at the deep end....the membership is at present down to six....since January, six or seven people have resigned. This partly reflects the training and a feeling of helplessness of those who have been appointed but also the appalling system that has been used to make appointments." "There is voluminous correspondence wioth the local Director (of the FSO) about its failings..."

Six Hertfordshire chairs:

"...we do feel the model as presently designed has some serious flaws..." "Our main concern at the moment is recruitment of larger number of members (sic) for forums such as speciality mental health services or acute hospitals." "it all depends on the willingness of government to realise...that the system is under-resourced."

Forum member:

"It is appalling that the government, having made a costly attempt to emulate what they had already planned to destroy....should now try to start up another system....This is a transparent attempt to rebuild, before the next election, what was originally an ill-thought-out concept."

Forum member:

"I hope that these forums do not end up being a 'talking shop without teeth or action' nor should they become a 'power trip and empire building' forum for some members."

Forum member:

"Despite enthusiasm and endeavour by all concerned the Forum that I sat on did not represent the views of patients and the public as a whole.....There were no young people, unemployed or persons from disadvantaged sectors of the community. The members were mainly like me, early retired or retired and/or middle class."

Forum member:

"I am appalled by the inefficiency displayed by the persons responsible....it would appear that they were totally incompetent in their original thinking and planning...heads should roll...This disasterous (sic) situation has wasted a considerable amount of public funds and has alienated many willing volunteers." "...I believe we have lost about 12 volunteers in just one year...from my conversations with them I know they were largely disillusioned.....it is like swimming against the tide to get things done...if this half baked idea of fragmenting our organisation goes ahead I believe we will lose most of our volunteers.

A Patient and Carer network:

"Robust attempts have to be made to engage with those areas of deprivation and social exclusion where the majority of people do not have a voice...

And damning statements from the CPPIH Commissioners:

"There was a desire in some parts for the Commission to be a mechanism for imposing a 'top down', though locally-oriented, involvement structure to meet national timescales, and government priorities and policy aspirations- rather than the local community's concerns. This has led to fragmented decision-making and unrealistic expectations at national government levels. While at local levels, we have seen frustration and a system that may compound - rather than tackle - lack of diversity and social inclusion."
"Our experience has been of an ongoing tension with the Department of Health about whether forums are about wider public engagement across the spectrum of health-related decision-making, or just about lay monitoring of the NHS. WE FEEL THAT THIS CLASH BETWEEN THE VISION SET OUT IN LEGISLATION BY PARLIAMENT AND THE WAY PPI WAS IMPLEMENTED, HAS CREATED FRUSTRATIONS FOR FORUM MEMBERS AND CPPIH ITSELF."
"The tensions and problems associated with the dissolution of the Community Health Councils, followed by two years of CPPIH uncertainty...has meant that the effective long-term vision for PPI in health in England, which MPs and others tried to achieve in legislation, has not yet been realised."
"The lack of support from our sponsoring department on this issue during the early life of the CPPIH has been frustrating.....there are strong 'silo working' tendencies within and between government departments which will need to be overcome if this work is to progress."

A (Sheffield?) trust organisation plus their 'patient liaison group:

"It is hard to see how the full engagement and diversity agenda is going to be achieved if PPI recruitment is solely through channels that already reach vocal health service users. Attempts should be made locally to adapt consultation materials or distribute to special needs groups, or to engage those who are dissillusioned with health services."

The Association against Medical Accidents (AvMA):

There is a need for an independent national body to support patient forums and represent them nationally. ideally this would be a 'bottom-up' national association of patient forums"
"We are very disappointed that key decisions affecting the new system of patient and public involvement have already been taken without consultation."

East Midlands PPI Workshop:

"....the people at the Department of Health...will now honestly admit that their timescales were ridiculously short."

CPPIH staff:

"....you had Commission staff who were very new and the whole concept was new, you had FSO staff who were new and probably didn't understand really what their job was...and I have to say it was a little bit like the blind leading the blind (sic)."
"It was like we were set up to fail really, wasn't it?"
“Having been done on the hoof, very quickly, to external timetables, and I think what happened is that it got set up backwards. So you had membership in place before the organisation was ready to actually deal with that.”
“I think probably we’ve had to recruit members without giving them a clear task of what they’re doing so that we’ve recruited people who are not clear what their role or their function is and equally, what the role and function of the Forums is. And that’s not the way we would have chosen to do it under normal circumstances.”
“We’ve not even covered people for whom English is not their first language, you know they really have made no effort or little effort to engage people from those communities.”
“People feel that they might just recruit more of the same and you get this sort of old crony network.”
“The performance of some of FSOs, i.e. the level of support they actually give the Forums, has been an issue. And it tends to be the ones who have a lot of contracts. Smaller FSOs with only two or three contracts have worked far, far better.”
“Part of it is that the FSOs are not quite sure, the administrators are not sure, there’s been a huge turnover in staff. Staff aren’t fully briefed haven’t had the training.”
"......they (forums) don’t trust what we say because they don’t believe it because we said this wasn’t going to happen and then it
happened or we said this was the way it was going to be and it changed....And they’ve gone to the Commission, they’ve told them something and sometimes we’ve had to go back to them and tell them that it’s wrong or it’s not right or it’s changed. And it puts us in a dreadful position.”
“It was in a week we had to do that. We had to get outside consultants brought in to write this guidance for Forum members and there was then four of us who worked solidly for a whole week trying to fill the gaps and identify the mistakes and there was just real pressure on us to get it out for 1st December and that went out as a draft and it was dreadful.”
"I don’t think it’s been rolled out properly, some people still don’t know how to use it (KMS). I don’t know how to upload anything on there.”
“I think that’s where some Forum members are getting really frustrated because they’re seeing that other Forum members are just wanting to work with the NHS or work with other committees, and they don’t actually want to work with the public. They’d rather just sit and go to board meetings.”
“I think the actual size of some of the Forum areas we’ve got to cover is a major issue. I’m thinking the Ambulance Trust, Mental Health Trust, we’ve got one the size of Northern Ireland and there’s six people.”

FSO staff:

“I really do feel really strongly that it isn’t about recruitment so much now, it’s about retention. We’ve recruited loads of members but they’ve gone, you know, we would have been up to 20 people now but we can’t retain them.”
"I actually was surprised at the kind of questions that they asked (at an appointment interview) and the way that things are explained because I thought well actually it’s not like that at all, that’s not what it’s like to be a Forum member and I was glad to be there to be able to explain a bit about it.”
"....hang on we’re not getting the people queuing up for this Forum that we expected so therefore we've really got to encourage anybody that comes along to say, ‘yes please.’”
“Unbelievable how a management group (CPPIH) can take so long to make simple decisions.”
"...there is lack of consistency in terms of interpretation of what Forums must do and should do and that leads to a lot of confusion..."
“I think everything’s wishy, washy with the Commission.”

South West forum members:

“Now some of the FSOs have shown themselves to be useless or very close to it.

East Midlands forum members:

“If I could just emphasise that anybody who has even a passing knowledge of group dynamics knows that you can’t parachute a member into a group of ten and make it work unless you’re very lucky. Especially when the appointments been made by someone umpteen miles away who doesn’t know the dynamics of the group anyway.”
“And my own view is if you’re on a Forum you’re on a Forum and that’s the prime, main and possibly only NHS activity you should be involved in, because as far as I can see whatever other organisation you’re affiliated with, you could and will, sooner or later have a conflict of interest.”

South East forum members:

“I’m afraid we’re victims of tokenism. They put enough money in to make it look like a good effort. The government’s jumped onto this new grassroots empowerment bandwagon that’s all the rage at the moment but it is just a token."
“Ours (public meetings) have been disastrous. I think we had four people to one and at the last one I think we had nine people but at least five of those were husbands. I don’t think there has been a single ordinary member of the public turn up. We’ve had basically our own spouses, whoever we’ve brought, plus perhaps a journalist, a couple of councillors.”

North East forum members:

“So what’s the point in getting rid of the Commission if you’re going to reinvent it.”

West Midlands forum members:

“No Forum I’ve had any contact with is even approaching the target figures approaching the CPPIH so they’re completely unrealistic.”
“The turnover at the moment is quite high. We’ve lost half our group in the last month and we’ve done sort of exit interviews and almost universally it’s been the amount of paper work that has come out from the centre.”
“You pay your money and you take your pick and I think that’s the problem. They chose the cheapest and they got what they paid for.”
“I think they need to be completely independent. Otherwise we will get into a completely useless situation and we may as well all resign.”

East forum members:

“Well we lost some younger members because they were working people and they weren’t given special time off, paid time off.”

London forum members:

“The workload is far too great for most people who volunteer and it affects the territory to which they feel no attachment or interest and if it was more local focussed dealing with simpler matters then there would be a lot more sharing of the overall burden.”
“I think the power has to stay with the local Forums. We are disempowered at the moment. We’ve got the FSOs telling us what to do. We’ve got CPPIH telling us what to do."
“One of the fundamental mistakes of CPPIH is they operate as a top down body.”
“We’ve had nothing from CPPIH, absolutely nothing. They have guidelines that they were changing every five minutes."

A former forum member:

"I had attended innumerable meetings about meetings but we never did anything."
"Really, what sort of people have you in the DoH and CPPIH. is there no-one with with substantial professional training and experience in human resourcing?"
"Surely some idea of what the aims and objectives were to be should have been determined before launching the scheme....it seemed pointless taking it up with the officials as, not only did they not have the answers, but seemed concerned about their jobs."
"It seems to me that no-one in your organisation has had any serious training in the social or behavioural sciences."


And these are only a proportion of the evidence. For more, look on the PIFFO site.


to the Committee on Standards in Public Life - Hello.

May I please draw your attention to the increasing reliance on substantial numbers of volunteers in some organisational cultures. A prime example of this is Patient and Public Involvement in Health where the operation of the system is entirely reliant on volunteers with numbers aimed at throughout England of over 9000 (currently via a NDPB, CPPIH).

Anomalies arise where, as in the above example, volunteers are classed as coming within the remit of human resources and are, in many ways, treated as paid employees - being subject to a personnel disciplinary process, for instance.

This is particularly important in relation to whistleblowing procedures in that volunteers do not come under the remit of the Public Interest Disclosure Act 1998. Public Concern at Work is aware of this anomaly and I am a little surprised it has not been addressed by your 10th report. Could you please consider the issue as a matter of urgency.

I am too, a little concerned at the absence of reference to the other prominent whistleblowing body in the UK, Freedom to Care - perhaps more radical than PCW; looking at things from a different standpoint and not always in agreement with PCW, but with as extensive a pool of credible knowledge and experience (I am not a member so have no vested interest).

Yours sincerely.

Mike Cox. 01.03.05.


Hello Mr Vivian.

The results are very interesting with much evidence confirming my own experiences.

But why is there no sign of either my report (appendix 1) or my comments to open questions from my questionnaire? Has there been a degree of selecting out issues and comments here?


Mike Cox. 05.03.05.


Dear Mr Cox

Thanks - I shall find out.


Meredith Vivian
Head, Patient and Public Involvement 07.03.05.
(I heard nothing further about this - Mike Cox 30.12.05)



8th March, 2005.

Margaret Arrindell,
Complaints and Standards of Conduct Officer,
East of England Region,
Ground Floor Block 7,
The Westbrook Centre,
Milton Road,
CB4 1YG.

Dear Ms Arrindell.

Formal Complaint (made 17.02.05.). Stage 2.

Thank you for your letter of 07.03.05. received today. I do not consider your response satisfactory and I am now requesting that my complaints be examined under stage 2 of the CPPIH Complaints Policy. The reasons are:

  1. My complaints are about maladministration of the processes. Although individuals are named, they are not the subject of the complaints. The complaints are, in the words of CPPIH: “....about the way CPPIH has acted, or failed to act in the exercise of its statutory duties.”

  2. Clause 11 of the CPPIH Complaints Policy says: “Complaints can be made up to six months from the date of the discovery of the incident (my emphasis).” The complaints are mine and are made about incidents discovered by me, as my initial letter says, ten days before that letter. Mr Fearn’s signature on the initial letter is to verify the accuracy of the information he supplied.

  3. Mr Fearn’s complaint was ruled out by the Parliamentary Ombudsman because it was classed as a personnel matter and the Parliamentary Ombudsman cannot deal with ‘personnel matters’ - not because it did not have merit. My complaint is not a ‘personnel matter’.

  4. The Local Health Partnerships NHS Trust provided “...services under arrangements made by the Primary Care Trust” (SI 2003, No 2123, 4(c)(e)), that Primary Care Trust being the Waveney PCT. And the Suffolk Mental Health Partnership (NHS) Trust provides services under arrangements made by Waveney PCT.

  5. The possibility of a false declaration having been made is reserved.

Please arrange for the matters, along with my initial letter, to be considered by the Chief Executive.
Yours sincerely, Mike Cox.



(Norwich & Norfolk Voluntary Services)
Late in 2004 I became aware that when I was seeking details concerning dates of forthcoming Trust Board Meetings, communication was established between the Office of the Chairman of East Anglian Ambulance (NHS) Trust and the individual charged above, The reason for this interest was then not clear, but, on the 23rd November 2004 the following was a communication from Rebecca Baker , East Anglian Ambulance Trust P.P.I.Forum Facilitator to the same Steven McCormack.. Quote "I’ve just been on the phone to Sarah Smithhurst (E.A.A.T. Chairman’s Secretary) for Board Meetings for 2005. She warned that John Fearn has been in touch recently, asking about the date of the next Board. It’s likely that he will be showing up there as a member of the public.
On Thursday 27th January 2005 at10.30 a.m. I attended the Board Meeting of the same Trust in the capacity of member of the public. When the Trust Board Chairman welcomed visitors individually by name, I was neither acknowledged by name (my identity was known to the Chairman) nor by designation (member of the public). A meeting of the EAAT PPI Forum, held in public, was scheduled to follow the Trust Board Meeting at 2.0 p.m. at the same venue. This information had been obtained, the previous day, by telephone from F.S.O. office. Enquiry was also obtained that the Forum Meeting was being held in public. When I presented myself for admission, at 2.0 p.m., Steven McCormack interposed himself between myself and the door thus barring my entry. His attitude was both aggressive and argumentative, asserting that the meeting was informal and definitely not open to the general public . This type of behaviour towards myself was familiar from my past encounters with this individual. Whilst I averred that his office had confirmed that the meeting was to be held in public, he continued both to argue and refuse me admission. It is only recently that documentation has come to hand proving that the 27th January meeting was advertised as open to the public. Documentary evidence being available for 1 & 2.
3 Notwithstanding exclusion, in April 2004, from membership of the E.A.A.T.PPI Forum I have maintained a keen interest in the work of that forum and wished to attend all meetings that were scheduled to be held in public. On several occasions I expressed this to Steven McCormack but he has resolutely failed to keep me informed of such PPI Forum meetings to be held in public
It is my belief that the described conduct of Steven McCormack constitutes serious contravention of Section 5 (b i.) of CPPIH Complaints Policy. Evidence could be given of previous discriminatory and and mischievous activity on his part in the immediate past. Such reporting ,however, would be seen as "personnel" matters, which would contravene Schedule 3 to the Parliamentary Commissioner Act 1967 (Section 10 - 1 & 2) thus disqualifying recourse in Stage Three of the Complaints Policy to Parliamentary Ombudsman. I further claim the protection of complete anonymity .
Signed :- (John Fearn) Date :- 17.03.05.


Dear Mr Cox

Thank you for your further e-mail of 1 March.

Your point regarding the fact volunteers do not come under PIDA has been noted with interest by the Committee. The issue was not covered as part of our 10th Report because, frankly, it was not raised in evidence to us as an issue in relation to embedding ethical organisational cultures in public bodies. Similarly there is no reference to Freedom to Care in the report because they did not submit any evidence to us, despite the fact a number of its patrons will have received our consultation paper. We will now include Freedom to Care on our direct mailing list.

Following the 10th Inquiry the Committee is now considering scoping a number of options to take forward as candidates for the next (Eleventh) Report. The implications for standards of conduct of the various partnership models being used to deliver public services i.e. public-private; public-voluntary & public-public will be one possible option, prompted by yours, and others, correspondence about particular standards issues raised by such partnerships.

As you will understand, the Committee is not obliged to take up this particular issue which constitutes just one of a number of competing options. Even if the Committee wishes further scoping to be done, decisions about what subject to address will not necessarily be taken at the next Committee meeting.

I hope this is helpful.

Yours sincerely,
Richard Jarvis
Assistant Secretary
Committee on Standards in Public Life
35 Great Smith Street
London SW1P 3BQ.


to Mental Magazine - Well!!

The government has certainly devised a way of subtly and insidiously killing PPI off:

The leading edge experts in PPI, mental health service users, being swallowed up and marginalised by incorporation with PCT Forums. The NHS Appointments Commission choosing Forum Chairs who will conform.

Making it impossible for people with disabilities to get involved by increasing distance and decreasing accessibility. Awarding FSO contracts on a regional basis thereby making these even more inaccessible

For the full report go to: http://tinyurl.com/6yaxm

Yet another nail in the coffin of proper caring mental health services by this government. No real service users and carers are going to have any truck with the DH's rigid reshaping of PPI Forums. It will be totally the future province of retired professionals and business people who see commercial advantages in NHS committee work.

While making it clear that I don't support any political party, this sabotage is hardly surprising really when you consider how this one has threatened fundamental civic rights recently and has given birth to the most draconian and anti-social proposals in mental health law since the eighteenth century.

Heddwch (a rare commodity these days).

Mike. 21.03.05.


I attended a PPI forum and found them a waste of time. It was meant to be to involve and consult with the public. What I found was, there was no real consultation. The powers that be decided what they wanted to do and told you how things were going to be.

I could not see the point in attending a meeting to hear this sort of "consultation". Pam 20.03.05.

----- Original Message -----
From: Lapune Silvis
To: mentalmagazine@yahoogroups.com
Sent: Saturday, March 19, 2005 6:30 PM
Subject: Re: [mentalmagazine] PPI destruction.

What an announcement Mike ! 1st the government wants patient power and then it wants to muddle things up. I know people in London on PPI's and there is a complaint that not enough support is given to patients on the MH forums. Did they ever want these PPI's to work anyway ? Does anyone get the picture that we live in a Crapocracy that practices hypocrisy.

PPI PIXX. (poem)

Rex went on a PPI
Suffered his voices
In the sky
And looked
Lack of support
In the eye

He said :
I'll support my crazy friends
Till the day I die
But this ?

Well , the Government are taking the pixx...... 20.03.05.


Dear Mike

Many thanks for your email and apologies for the delay in replying. The Greens are highly sceptical of the restructuring of the PPI forums in the way that the government has set out. Indeed at a meeting tonight of the London Ambulance Service Forum tonight we are giving our support to a motion that has been proposed that the forum is not abolished. Joseph Healy, a member of the party states "It was clear to me and others that the government's main aim in abolishing CHCs (community health councils) was to rid itself of a consistent critic of the operation of the NHS and to establish in its place a system which be poorly resourced." We believe that this new system will merely create a toothless watchdog rather than being an
effective body.

Best wishes

Greg Patton
Administrative Officer
The Green Party
020 7272 4474 04.04.05.



06.04.05. An out-of-the-blue call from CPPIH Central Office, Birmingham. Caller introduced himself as Richard Kenny dealing with my stage 2 complaint which he was very hazy about, thinking I had complained on behalf of someone else - either he didn’t have the paperwork or he hadn’t read it! In an amicable conversation I explained my complaint and we agreed to a meeting at a the CPPIH regional office in Cambridge between Mr Kenny, myself and Mr Fearn. Date and time to be arranged.



Dear Mike,

Thanks for your email. The Liberal Democrats opposed the abolition of the Community Health Councils, and are concerned that in the Government's rush to abolish them the patient's voice has been lost. Some changes to the PPI arrangements would inevitably follow from our commitment to give Local Authorities the health-commissioning role, we would take the opportunity to review and simplify the structures for patient and public involvement.

As well as having the opportunity to self-advocate and manage we want to see patients and carers being actively involved in the design and assessment of services and the journeys or 'clinical pathways' that they take through the system. When commissioning health and social care services, local authorities should ensure that user groups are involved at an early stage and the necessary resources are devoted to seeking the views of hard to reach and vulnerable service users. We also support the establishment of GP practice user groups to make recommendations for change on a regular basis.

Best wishes, Debbie Enever 14.04.05.



Further to this, the Conservative party candidate for Norwich South knocked at my door so I asked him his views on this matter. He had never heard of PPI Forums. I'm not sure whether this says more about the Conservative party or the Commission for Public & Patient Involvement in Health.

Alison 16.04.05.


Message to call Susan Lees of CPPIH (0121 222 4536). Through the following day. Asking if I and Mr Fearn could meet Mr Kenny in Cambridge this Friday, 22.04.05. at 11.00am. Said the short notice not a problem for me but a morning meeting in Cambridge is. Said I would check if an afternoon meeting is possible and she with Mr Kenny and I would call back soonest. Checked: Mr Fearn not able to make Friday pm. Called back. Susan Lees not available. left message meeting not possible. Call from Ms Lees later confirming she’d received my message. Agreed to e mail communication in future.


22 April 2005 Hello Mr Kenny.

Apologies for being unable to meet you this Friday. I am inconvenienced by a legacy of major surgery which means it is not possible to leave the house until late morning - anytime after that is fine and I can get
quite a lot of work done at home in the morning - it is just that I can't go anywhere then.

It seems sensible to me that we leave the meeting until after May 5th now. Perhaps we could meet then at a time in the afternoon (or evening) and a date convenient to you excluding Tuesdays and Wednesdays.

One further request. I would like to record the meeting for the purposes of verification of the content. I'm quite happy to give an undertaking this will not be used for any publication purposes.


Mike Cox.


22.04.05. Dear Mike

Leaving the meeting post-election is fine with me though I do want to meet with you.

Sue will be in touch to arrange a mutually convenient date meeting your requirements as set out.

I have no problem with you recording the meeting though I do feel it is unnecessary - I would always provide you with a written follow -up of the outcome of the discussions for your comment or response. If you do
wish to record it I would require a copy provided at the close of the meeting.

Please confirm how you wish to proceed and I look forward to meeting with you.

Kind regards



22.04.05. Hello Richard.

A written follow-up from you puts you in total control of whatever interpretation you and your staff put on the content. That is not satisfactory for me. Let's get this clear, this meeting is mutually reciprocal - no party to it has charge or authority over the other.

I have many years' experience of all varieties of corporate communications from child abuse conferences to trade union representation in disciplinary proceedings. Managers, Officials and third parties with the highest personal integrity invariably have different perceptions of proceedings depending on their cultural and
organisational interests. Recordings are accepted as an effective means of avoiding those pitfalls and the time wasting distortions that can arise from them.

Additionally, from my point of view, I want an accurate record of the meeting for evidence should the complaints need to be taken to a further stage.

Now I don't have to tell you all this - you are as aware of it as I am. And you are as aware as I am that it is not possible for me to give you a copy of my recording at the close of the meeting. You should make your
own recording if you have reason to refuse this quite routine facility.

Please respond.

Heddwch. Mike.



As Deputy Chair of the PPI Forum for Birmingham & Solihull Mental Health Forum I am now resigning. I have served the PPI for over a year . I have supported in 2003 the need for 72 patients in Moseley to be properly consulted only to see a report about follow up on that cynically sidelined.
This year I have supported the need for full consultation at the Frantz Fanon Centre for Afro Caribbean and Asian Services. The Trust under financial pressures look set to close this centre anyway . I think that undermines services to BME Service Users. Their consultation rights were also sidelined until the PPI strove to alter that.
On a personal note I have given the Commission For Patient & Public Involvement In Mental Health long enough to answer me on issues of Mental Health personal support as an actual "patient" on the patient's forum , and now I feel I can no longer continue being a PPI member without appropriately thought out supports.
Its not just about me though - lots of patients nationally who have needed more support have not got it . We are allowed "a carer-allowance" to attend meetings - and that's it . It does not fit need properly. As someone who suffers social exposure fears after a history of maternal separations followed by child abuse - I expected more support . Its hurts me being around people . Yes - its part of my "normality" - I need to emotionally unload that somewhere reliably.
I am also dismayed by the way a number of things have been handled over time which have caused me real personal suffering. I will be pursuing those later.
My colleagues on the PPI both past and present have been truly warm human beings. I wish they had ALL been supported better . I wish them all well and will support them in other ways as an independent patient with a lot of frontline experience...
Paul Brian Tovey, A PPI deputy Chair - that is now a member of the public. 24.04.05.


26.04.05. Dear Mike

Many thanks for getting back to me so quickly.

My own view is that recording the meeting is really not necessary. We operate here in very open and transparent ways and so because we have to mutually agree to record it I have decided it does not add any value to a meeting of this nature. My purpose is to understand and respond to your concerns. If you are unhappy with my response you can follow it up further.

I also am able to now come back to you on your request for John Fearn to attend the meeting. The complaint concerning John Fearn is now closed. It has been through all the stages of our complaints policy. The issue
you have raised is separate. On this basis I am not content for John Fearn to attend this meeting.

Kind regards. Richard



27th April, 2005.

Richard Kenny,
CPPIH National Centre,
7th Floor,
120 Edmund Street,
B3 2ES.

Dear Mr Kenny.

Formal Complaint (made 17.02.05.). Stage 2.

“Involvement must be based on inclusion, partnership, mutual trust and respect; Involvement must be genuine, meaningful and user friendly;” (Circular HSS (PCD) 7/2003, Community and Service User Involvement)

“But the system itself, and the way people work in the system, can often get in the way. There can be barriers and blockages, professional and organisational boundaries, vested interests and perverse incentives. This is why the service needs to change so that it is truly patient led with a new framework of standards, skills, organisations, systems and incentives.” (Creating a Patient Led NHS, DH, March 2005)

Thank you for your e mail of 26th April containing your kind offer to “understand and respond to your concerns”. We are dealing here specifically with complaints, not concerns and I am at a loss to see what there is to “understand”: my complaints are laid out clearly in my letters dated 17th February and 18th March, 2005. However, as well as enclosing copies of those original letters here, I will restate the complaints as a straightforward summary:

  • The first is that CPPIH appointed a person to a PCT PPI Forum contrary to Statutory Instrument 2003, No. 2123, The Patients’ Forums (Membership and Procedure Regulations 2003, Clause 4 (c) (e).

  • The second is that CPPIH mistreated the forum member who initially offered the above information to one of your officers who failed to record, or act on that fundamentally serious expression of concern.

What I expect from you is a statement acknowledging the negligence and maladministration embedded in these complaints and what remedies, if any, you propose.

Since you have decided my recording of a meeting between us cannot not take place, I must tell you as a NHS service user and independent member of the public, I have decided that:

  • as John Fearn is the person involved in my second complaint and has connection with my first, his presence is essential to any meeting to discuss the complaints and;

  • as, because direct personal experience when a forum member included much duplicity on the part of CPPIH and, for thirty years, it has been my personal and professional practice to ensure I have an accurate record of important meetings (and refusal usually means the other party has something to hide);

further communication and your response to my complaints must be by letter. I respectfully hope we mutually understand that.


Mike Cox.


03.05.05. Dear Mike.

Thank you for your letter dated 27 April in response to our e mail exchange, the last of which was my e mail to you on the 26 April.

Both aspects raised in your letter have already been fully investigated and taken through all stages of the Commission’s Complaints policy and procedures.

As a result I no longer see the need for us to meet to discuss matters that are closed.

Yours sincerely, Richard Kenny, Programme Director.



(Correspondence from a PPI member) Dear Steve Lowden, 13/05/2005

I was interested to receive, yesterday afternoon, hard copies of letters to xxxxx from Richard Kenny dated May 10th, and you dated May 11th. These refer respectively to issues specific to CPPIH and xxxxxx; and the complaints raised by CIDA, the FSO for the xxxxx group of Forums, and xxxxx, xxxxx xxxxx and me as representatives of them.

I wrote to you on May 2nd but so far have not received the courtesy of a reply.

You are aware that xxxxx, xxxxx and I are in frequent communication and often share tasks to avoid duplication and time wasting. Because it is apparent that our various issues, though separate, do interlock and cover some common ground, I have agreed to collect relevant data. As you can imagine, this is a time-consuming task which is not made any easier by the fact that many documents are undated and unsigned. The documents in preparation include:

A chronology.
A Œfailures‚ file (my so-called Dirty Dossier) with examples relating to both FSO and CPPIH.
Direct quotes and excerpts from CPPIH and CIDA documents. The legislation is common ground.

These are not yet complete, but when they are, they will be needed by all parties including Richard Kenny. It would simply not be possible for these complex documents to be with him today. Further, it is appropriate that there should be reciprocity in the free and open exchange of documents between all those concerned. It would not be reasonable to insist that our documents are with Richard Kenny prior to any meeting that he might hold with me or xxxxx xxxxx or xxxx xxxx or any other xxxx Forum member without ample time to study any documents that he might cite.

Yours sincerely ,


Thanks for your email.

I can imagine that putting together the 'catologue' would take time but do you have any idea when you may have finished this task?

Steve 16.05.05.


Dear Steve,

Thanks for this prompt acknowledgement. Did I really spell catalogue like that? So far as the time scale goes, much depends on other members of your team and their demands on available time: Bernadette Beckett had asked us to meet for 'a chat' tomorrow afternoon; though I think she is likely to defer that until she has found time to answer points we have raised. I have to have a discussion with a relatively new member of my Forum tomorrow morning, and I am at CPPIH London most of Thursday. In addition I am on the steering group of another xxxxx health services users group which meets on Wednesday.

Nonetheless, I am fairly well on, and the end of this week is probably realistic, though the documents may be unchecked and possibly subject to late revision. I have requested updated documents from CPPIH but they have not turned up - nor have requests even been acknowledged. This is more than a little disappointing. I propose eventually to make my documents available to all interested parties; it is already abundantly clear the the data fully supports any criticisms that xxxx, xxxx or I have made of our FSO. While there may be the odd quibble, much of the material is incontrovertible. My target is to get these unfortunate matters sorted out: i.e. complaints abandoned or dismissed, apologies made where indicated; and the complaints procedure reviewed. It is to be hoped that we can avoid meetings (which are not terribly easy for me anyway) and sort the issues out by correspondence. There are witnesses to most of the events being considered; would statements help?

Meantime, it would be helpful if CPPIH staff were instructed to send us all relevant documents - preferably dated and signed!

Please, let us deal with these matters so that we can all get on with our real task of representing the patients.

Yours Sincerely 16.05.05.


Comments on the CPPIH Standards of Conduct Policy by a London PPI member: 18.05.05.

  • This is a ghastly one sided document:
  • There is no clear positive statement of what Forum members are expected to do (e.g. advocacy of patients needs, action following inspections, ensuring FSOs are held to account).
  • It gives CPPIH overweaning power without any independent accountability for its actions against Forum members
  • It is not clear who decides how a complaint becomes a standards of conduct issue and therefore under this procedure
  • It doesn't make adequate effort to see that matters are dealt with informally before it reaches Stage 1
  • It fails to limit suspension to exceptional cases
  • It fails to set limits on suspension
  • While it implies open access to information, it sets no terms or time limits around this
  • It is seriously inadequate in defining record keeping during the process
  • It fails to consider what happens when CPPIH is in a conflicted position
  • There is no commitment to learn from the experience of Forum members or to involve Forum members in the review of this statement
  • FSOs are not subject to this process


(Correspondence between London members)Thanks xxxx.

Is it the case that everybody in your list raised questions about non-compliance with statute but received no explanation only threats of or actual disciplinary action?

ie were finding it necessary (because of FSO/CPPIH incompetence) to explicitly direct staff as per Statutory Instrument?

Recall London CPPIH told me in November we did not direct staff. I told them they were wrong but it might not have sunk in.

My guess is this is the real basis for all this.

CPPIH staff were misindoctrinated in respect of their duty to comply with Statutory Instrument. I have informally taken advise from two barristers, one an occasional judge in Canada, who would say CPPIH were acting "ultra viries" with respect to this.

You ought to be aware that our inability to scrutinise Forum accounts leaves the door open for Fraud.
Such accounts 2003-2004 as I have seen show plenty of non best value expenditure eg computing. Capital expenditure seems high- maybe they bought offices.
They get approx £30million per year and most income is now being fed through FSOs up from £9 million to £18million (their est.) this year
Expenditure that Forums have charge of should include members expenses, training, leaflets, posters, stationery, advertising, refreshments and room hire. I can't see if the FSO Contract is a fixed or variable cost. Statutory Instrument does not exclude FSO contract costs in that we direct them and keep accounts which would mean we approve payments under that contract. Without this there is no best value check which is required by Govt. 28.05.2005



Justice for Patient and Public Involvement Volunteers

In February 2005 the Commission for Patient and Public Involvement in Health revealed that 52 forum members had been “subject to procedures being taken by CPPIH under the Standards of Conduct Policy since 01.12.2003”.1 It is not acceptable that PPI forum members have limited rights under these standards.

Forum members have found that, unlike CPPIH and other paid staff, they lack the right:
* to a careful assessment of a complaint and the evidence for it when it is first received
* to know who has made allegations against them
* to receive copies of written statements submitted in support of complaints
* to be informed when and where incidents were meant to have taken place and the specific words or behaviours allegedly involved
* to timely investigation and reporting, even when suspended from duties
* to have an enquiry into events once they have resigned as a forum member
* to an independent investigation when CPPIH itself is accused of impropriety
* to any appeal independent of CPPIH, even when there are questions about the behaviour or motives of CPPIH.

Such principles are fundamental to fair complaint management. If not followed the competence and impartiality of those handling the allegations should be challenged.

Please support a campaign for volunteers to have protection similar to that granted to paid employees when they are accused. A summary of the rights of employees is appended on page 5.

Do share this information with your forum and with other forum members in your area. Write or email CPPIH with your views on these matters. Please copy correspondence to me – contact details on last page.

The Cases

The cases listed below demonstrate the lack of an equitable procedure in complaints made against forum members. They relate to five cases that I have become aware of in the last few months. I am not involved directly in any of these cases and my contact with the people concerned is relatively recent.

I am not in a position to present all sides of these cases and am necessarily being selective in what is presented. The point of the selection is to demonstrate what I believe is a compelling case for reform of the standards and an independent enquiry.

In all cases the complaints were made following disagreement with CPPIH about the statutory framework for forums. In four cases there were long-standing, documented disputes between the members and the same FSO, CIDA, about the quality of CIDA’s support. One forum formally requested the termination of CIDA’s contract in January. More recently CIDA lost the contracts because of its poor performance. Altogether CIDA lost 8 of its 15 contracts due to forum dissatisfaction.

Case 1. E.

E was a member of a forum covering a very large area. In April CPPIH sent E a letter accusing him of acting without forum consent and inappropriate behaviour. Part of the latter was reporting a breach of CPPIH's Membership and Procedure Regulations.

The activities E was accused of conducting without forum consent were a continuation of voluntary work he had carried out for several years, such as finding out about out-of-hour services by GPs in his area and visiting the local A&E. Others have stated they do not see E’s activities as different from those of other forum members. When E asked where the complaint had originated CPPIH declined on the grounds of confidentiality.
E was so disturbed by such accusations and way he was being treated that he declined the invitation to an informal discussion. He was suspended and eventually resigned. His complaint to CPPIH about his treatment was rejected and they refused to look at it further because he had resigned. There is now another complaint with the Parliamentary Ombudsman that includes E’s treatment as a whistleblower and CPPIH failing to act in the exercise of its statutory duties.
Comment One worrying aspect of E’s case is that when CPPIH interviewed him about the breach he had reported the officer kept no record of the interview.
Within CPPIH’s Standards of Conduct Policy there is an appeal procedure that states, “The decision of the appeal panel will be final.” Given that there is no right of further appeal such as those open to employees, one might hope to find some measure of independence from CPPIH. Instead, the appeal panel consists of “the relevant Director of Operations, with a Commissioner and the Head of HR as panel members. The panel will decide whether to conduct another hearing, or whether to review papers.”

Such a panel has the right to draw a line without any further investigation and in doing so both the panel and CPPIH avoid accountability for their actions.
When E first took the matter to the Parliamentary Ombudsman it was rejected as it was seen as a “personnel matter”. As the legal redress available to paid employees does not apply to volunteers the only way to ensure due process is for a CPPIH complaints procedure that ensures comparable standards for volunteers and a more fair-minded appeals process.

Case 2. N.

In September 2004 CPPIH notified N by letter of two complaints. The first complaint was specific but was subsequently shown to be without foundation. The second complaint did not state when or where alleged behaviour had occurred or specify what words or actions were involved. The member was suspended and told the target for completing the investigation was ten working days and, if needed, a “Standards of Conduct Meeting” would be held within another 20 working days.

The investigation report was sent to N in March 2005. No explanation has been given for the delay. The report did not specify the offending behaviour and N was not advised of it in any other way. N agreed to send a letter of apology in order to resolve the matter. The apology was rejected, as N had not undertaken to repeat the still unspecified behaviour. He believes that the complaint followed questions to CIDA relating to their performance and the legality of certain actions.

As of the June 5 N still does not know the specifics of the case.

In September N was sent CPPIH’s Standards Of Conduct Policy And
Procedures For Members Of PPI Forums, which outlines how complaints are to be dealt with. This document was not dated. This year N was sent an updated version. Again, this has no date or issue number.
Comment N was let down by not being allowed to see what complaint was received by CPPIH, any evidence for it and undue delays in reporting. The lack of document identification for a complaints procedure is incompetent and suggests CPPIH is not skilled in such matters. The insistence on a promise not to repeat an unspecified behaviour could come from “Alice in Wonderland” or Kafka.

Case 3. A.

On February 24 CPPIH London Region sent an A, H & J an agenda for a review meeting with CIDA for the next day. Also sent was a “Performance Management Improvement Plan” for CIDA for the period April to Sept 2004.

At the performance review meeting A, H and J questioned the late delivery of the Plan. Shortly after the meeting started the forum members left, as they understood that they were being threatened legally by CIDA.

In a letter dated 4.3.05 CPPIH forwarded to A a complaint of “sexual harassment” and “attempts to damage the professional reputation of CIDA and the personal and professional reputations of its staff”. Before this letter A was not aware of any complaints about his behaviour.

The letter made clear that the complaint had been raised by CIDA but did not provide details. CPPIH’s letter invited A to a meeting to discuss the complaints.

A wrote to CPPIH on March 10 asking for details of the allegations. The March 24 response from CPPIH advised which CPPIH people would investigate and that “they will be in touch with you shortly.” On March 29 A wrote to CPPIH detailing the specifics of the complaint he required. CPPIH replied on April 15 saying it had to get the complainant’s permission and suggesting this could take up to 40 days due to Data Protection Act requirements.

Also on March 29 an email was sent to CPPIH asking for details of complaints and an investigation into how London Region had handled the complaints. On March 22 CPPIH had been advised by the forums of A, H and J that they had confidence in their colleagues and that CIDA’s contract should not be renewed.

On April 28 Steve Lowden wrote to A saying that he understands the investigator “has now managed to secure a meeting with CIDA to establish in detail the precise nature of the allegations they have made.”

On May 4th CPPIH sent with a covering letter an undated and unsigned document as the basis of the complaint. There reference to “sexual harassment” had disappeared but there was a new allegation of “harassment and bullying” relating to the questioning and challenging of CIDA’s role as an FSO. Still no specific instances were given.

Dates were given in relation to only two of the CIDA allegations. One for a meeting on 1.12.04 when A is alleged to have displayed “inappropriate attitude and behaviour” to a named CIDA member of staff. However, what was inappropriate was not specified nor whether CIDA had any corroborating witnesses.

The other dates were January 20 and 21 when CIDA said that it had contacted several of A’s fellow forum member on January 20 and 21 and had found that they expressed unhappiness at the chair’s actions of A. However, no forum member names were given, nor the number who were unhappy, and no specific chair’s actions were identified.

A is concerned that several of the matters to in the May 4 document are events that happened after he was first informed of the complaint or outside of the cut-off period.

Comment When A asked CPPIH for the details and supporting statements CPPIH suggested this could take up to 40 days but did not explain why this number of days. What is clear is that CPPIH prematurely invoked the complaint procedure. If CPPIH at the outset had statements in support of the complaints it should have ensured that it had the right to forward these to the accused. As of June 5 A still had not seen the supporting statements.

Steve Lowden’s letter of April 28 implies that the details had yet to be gathered from CIDA, seven weeks after the March 4 letter.

CPPIH has not explained how the very serious accusation of “sexual harassment” has disappeared from the subsequent letter. This suggests that at the outset CPPIH either do not know the difference between harassment and “sexual harassment” or did not review the alleged behaviours to see if they met criteria for sexual harassment.

It is disturbing that part of the complaint related to challenging CIDA and its staff when subsequently CIDA lost the contracts in question. What weight did CPPIH give to “Whether the witness has suffered at the hands of the accused or has any other reason to fabricate evidence”? Did CPPIH make “tactful enquiries into the character and background of the witness, and in relation to any other information which may add to or detract from the value of their evidence”(see Appendix)?

With what authority was CIDA canvassing the opinions of forum members about what the Chair might have done? More importantly, it appears that what CIDA presented to CPPIH is hearsay and even this without identifying the forum members concerned.

Cases 4. & 5. H. & J.

The cases of H and J are comparable to the case of A though there was no allegation of sexual harassment made against H and J. The dates of the key correspondence are also similar.

Specific to J was the allegation that “pressure was put on (the FSO) to disregard CPPIH guidance” and seeking to remove CIDA’s contract. As in the other complaints the “charge document” is undated and unsigned, very little is specific and some of the events appear to have happened after the original letter advising of the complaint.

H resigned as a Forum member following what were perceived as legal threats by CIDA and what H, A and J interpreted as CPPIH reluctance to provide them as volunteers with the backing and support they deserved. When H resigned CPPIH stopped the complaints against him. Despite this H was identified in subsequent correspondence along with the allegations made against him. After protests CPPIH apologised for this but it again raises questions about their competence to handle complex complaints. Because he had resigned H has no formal opportunity within CPPIH’s procedure to challenge the allegations made against him.

Comment A & H, and J are well known in their professional circles and to other public bodies and are very concerned at the way in which allegations that could be very damaging were accepted for action by CPPIH without first ensuring that there are sufficient grounds for proceeding. Even after two months the quality of the details received are woefully deficient.

Appendix on Legal Rights of Paid Employees

Volunteers are not protected by employment legislation but the standards for handling complaints against paid workers easily could be shared with those who donate their services. The Employment Act 2002 requires that if an employee is accused of improper behaviour then
* The employer must set out in writing the employee’s alleged conduct or characteristics, or other circumstances, which lead them to contemplate dismissing or taking disciplinary action against the employee.
* The employer must send the statement or a copy of it to the employee and invite the employee to attend a meeting to discuss

The ACAS Code of Practice on Disciplinary and Grievance Procedures says:
Good disciplinary procedures should:
* allow for matters to be dealt without undue delay;
* require employees to be informed of the complaints against them and supporting evidence, before a meeting

Case law also provides guidance for employers and useful principles for those who manage volunteers. The following is from http://employment.practicallaw.com/8-200-2423 and parts of it are highly relevant to the disputes with CIDA.

“The case of Linfood Cash & Carry Limited v Thompson [1989] IRLR 235 sets out a number of guidelines to assist employers in balancing the need for a fair hearing with the protection of the witnesses and informants:

The information given by the informant should be put in writing in one or more statements. Although the employer may need to erase certain parts before showing the statement to others (if anonymity is to be preserved), the statements should initially be taken without regard to that fact.

When taking witness statements consider the following:
* The date, time and place of observations and incidents;
* The witness's opportunity and ability to observe the incident clearly and with accuracy;
* Relevant circumstantial evidence such as the individual's knowledge of working arrangements, his reasons for being present and viewing the incident, and why he remembers certain small details; and
* Whether the witness has suffered at the hands of the accused or has any other reason to fabricate evidence.
* Corroboration of witness evidence is desirable. Once witness statements have been taken, further investigation may be required to verify or undermine the information given.
* It may be appropriate to make tactful enquiries into the character and background of the witness, and in relation to any other information which may add to or detract from the value of their evidence.”


My forum has had excellent support. I have raised these matters because I believe there must be an independent enquiry into:
* How CPPIH has awarded and managed forum support contracts. It is important the lessons are fully documented before the new Department of Health administered contracts.
* How CPPIH has responded to complaints over time about CIDA, especially given that the Chief Executive of Haringey Council publicly warned CPPIH against CIDA (The Guardian, 27.10.03).
* How CPPIH has responded to the complaints made by CIDA against Forum members and whether its procedures and practices were fair and reasonable for the volunteers concerned.

When earlier I raised the issues of A, H and J one response from CPPIH London Region was that there is another side to the story but confidentiality prevents it being disclosed. The forum members involved have persistently sought a thorough examination of what has happened with CIDA.

I support the call made by Camden PCT PPI Forum on March 16th for this to be carried out by an independent enquiry, as CPPIH is too involved in these matters. CPPIH is responsible for the nature of FSO contracts, the selection of FSOs, and their performance management. There is the question of the stance CPPIH took when forum members were in conflict with CIDA and the incompetence shown in managing the complaint process.

A well as basic justice there are other reasons why these matters must be put right.
* Such events affect the recruitment and retention of volunteers.
* Forum members want to spend their time working for patients and not chivvying CPPIH to provide basic human rights for its volunteers.
* We need this issue sorted out before CPPIH disappears and the new regime takes over.

Paul Burns 2
Chair of Patient & Public Involvement Forum
of the Central & North West London Mental Health NHS Trust
Home Address: 98 West Hill, Wembley Park HA9 9RR

The forum members involved in the five cases have agreed to the details contained in this document being made available to other forum members.

Author: Paul Burns 6.6.05.

Paul Burns 2
Chair of Patient & Public Involvement Forum
of the Central & North West London Mental Health NHS Trust
Home Address: 98 West Hill, Wembley Park HA9 9RR

The forum members involved in the five cases have agreed to the details contained in this document being made available to other forum members.

Reply from CPPIH to Mike Cox, following requests made under the Freedom of Information Act. The reply also revealed that in the same period 12 resigned as a result of the Standards of Conduct procedures taken by CPPIH, 3 had been dismissed, and a total of 1333 Forum Members had resigned. (This note relates to paragraph 1 on the first page.)

2. As an Organisation Development Consultant I investigate complaints against employees, including allegations of discrimination and bullying. With my partner I have written guidance on investigating anonymous allegations. As a counsellor I have worked with, at different times, employees accused of wrongdoing and people who have been harassed. For the last five years I have been Complaints Officer for a professional association and one of my first tasks was rewriting its complaints procedure.


FoI Officer,
CPPIH National Centre,
7th Floor,
120 Edmund Street,
Birmingham, B3 2ES.


Freedom of Information Act.

Brenda Cook, Regional Manager for the East of England CPPIH has recently been appointed to “.....work with the Centre for Public Scrutiny to produce the guidance for joint working between OSCs anad Forums as a result of the recent consultation.” And she will “.....leave the Commission..” at the end of July. (Shaping Health Newsletter, Spring 2005.)

Can you please tell me:

  • what the process of the appointment was;
  • how many candidates for the appointment were there;
  • how and where the appointment was advertised;
  • what was the make up of the interview panel(s);
  • was there independent scrutiny of the appointment;
  • was the appointment made under the aegis of the NHS Appointments Commission and if not, which was the inspection/scrutinising body;
  • which organisation is the employer of the new post;
  • were service users (your term patients) and carers involved at all in the appointment;
  • what were the essential qualifications and requirements for the post?

I look forward to your reply.

Yours sincerely. Mike Cox. 7th June, 2005.



One Disenchanted View

The National Convention for Patient and Public Involvement Forums

Birmingham, 7 & 8 June 2005

Some 365 forum members were on the convention’s delegate list. Even if each member was from a different forum this means less than two-thirds of forums had a representative. Some attendees may have gone home feeling content. For the reasons given below I did not. All the same, my thanks to the CPPIH staff who contributed to the event.


This was CPPIH’s first conference for forum members. CPPIH did not use the objectives for the convention agreed by a reference group of forum members from around the country who were brought together to advise on the event. I was a member of this reference group.

The convention programme has no “objectives” but CPPIH identified five “key strands”
* Transition – the future face of PPI
* Working with partners
* Forums working together
* Effective forums and good practice
* Health of the nation

What was left out from the reference group’s objectives for the event was support for developing a national association of forums. The second meeting of the reference group was shown a conference programme with no mainstream time for discussing a national association. Only after argument was this given a slot on the second day and not merely relegated to the “fringe meetings” at the end of the first day.

Both the fringe and mainstream meetings about the National Association were well attended. Some 30 came to the former and c 65 to the latter. There was an offer of £10,000 from a forum member to help set up the NA plus Meredith Vivian of the DoH asked if he could attend planning meetings. Some people wanted the NA to wait for regional bodies and others pointed out time is short, we need a voice soon to have influence before parliament has made its mind up about the future of PPI.


CPPIH started planning this event late and it showed. I think one sign of this was not having more forum members. Publicity was too slow appearing.

I was approached about the reference group in February but our first meeting was not held till March 24 and the second on 9 May, and that with only six working days notice. The first programme appears to have been drafted towards the end of April.

It is hard to say how many delegates had glitches like mine. I had an email from CPPIH dated 2.6.05 saying “You have been booked into the Crown Plaza Hotel… for the night of the 7th June and confirmation of this & joining instructions will be sent to you tomorrow by our event management company.” No joining instructions arrived and I found at conference reception that I was not on the delegate list and there was no reservation for me. Later another hotel room was made available. It took some time persuading this hotel that the room booked for “D. Burns” was indeed for me.

I was supporting a fringe meeting on Complaints. For some reason this was not included in the list of fringe meetings, even though CPPIH had printed off materials for one of the presenters.

Some delegates found the distances they had to walk to workshops tiring. Any future events will need to take more account of the high proportion of forum members with disabilities and/or health issues.

The Department of Health

The DoH was missing from sessions that needed its input on the first day and forum members noted their displeasure at this. There was no one to answer questions at workshops about the development of a PPI Resource Centre or the new arrangements for forum support. Those attending the workshop on the Resource Centre were highly critical of what little information we did have.

Harry Cayton appeared on the stage with the Minister but left after speaking once for another meeting. We were not told what was more important to the “patients’ czar” than spending time at a PPI convention.

The Minister’s Speech

Rosie Winterton spoke of how she had often met with forum members on her travels. Despite this what she had to say often was out of tune with the forum members present, including the NHS Appointments Commission’s role in selecting chairs and the abolition of specialist forums. One forum member pointed out Rosie has used “I think” 42 times and said what we wanted was not what Rosie thought but research in support of her views.

Whose Conference Is It?

The event programme says, “the convention is a forum members event.” Yet CPPIH staff facilitated most workshops and it was not always made clear what other groups, such as FSOs and DoH, were present. I have mixed feelings about the taping of sessions. It may be that with recording some forum members are less likely to speak frankly about issues. There is also the question of who edits the tapes and summarises the convention.

Press Coverage

As far as I am aware there has been no national media coverage of the convention, not even of the minister’s speech. If you look at this (http://snipurl.com/fivq for DoH press release) you will see it even manages to avoid mentioning CPPIH or the conference. A press release from CPPIH appeared some days after the conference, though dated 6 June. The only report I have found was in the Birmingham Post and is headed “Forums refuse to be silenced” - http://snipurl.com/fjrm

There appeared to be no attempt to insert into Sharon Grant’s speeches anything that might fire the interest of the media.

Choosing Health

CPPIH keeps promoting this DoH initiative as if it was something that had come from forum members. While some forums might make links to it there is no groundswell asking for this to be a CPPIH priority. If as CPPIH says it is short of resources, why appoint someone to promote Choosing Health? Whose priority is this?

The convention programme listed seven Choosing Health workshops. Not included in the programme were suggestions of the reference group such as:
* Building Community Engagement
* Out of hours GPs services
* Trust Financial Issues –Deficits/Contracts
* Infection Control
* Access to services/GP/Dentists
* How do you create community engagement?
* How do you regulate patient choice?
* Foundation Trusts
* Electronic Patient Records
* Maternity services
* New pharmacy arrangements
* Mental Health Primary Care
* Carers
* NHS Direct
* Private Finance Initiatives
* Long Term conditions

Why ignore the bottom up issues in favour of the top down agenda?

Lack of Inspiration

The only inspiration I found was among forum members. There was nothing inspiring about the official speeches. This is a critical time for forums but CPPIH, DoH and the minister have not provided the vision and direction we need. I sensed CPPIH feels beleaguered and out of its depth. It seem likely that the Commission’s ability to function will diminish greatly in the next six months with the growing loss of experienced staff. I fear that forum members will be used to the idea that CPPIH is not there to support them long before the Commission is formally abolished.

Lack of Honesty

In her opening speech Sharon Grant claimed “…almost 5000 members, each one supported by one of 67 Forum Support Organisations”. But several forum members at the conference raised the issue of lack of members. It is not enough to have ten members on paper if only five of them attend meetings and only three of them are prepared to do more than come to some meetings. Any meaningful measure must be of active members.

The latest figures, not shared at the conference, show that between November 2004 and May 2005 786 forum members resigned, about a15% turnover in six months. If CPPIH has conducted exit interviews or other research about this haemorrhaging this would have been of great interest to the conference. Knowing the reasons for leaving would be a useful starting point to doing something about the losses.

The claim that all forums have the support of an FSO is a distortion. Many forums have had very poor support and some are still waiting to see how new arrangements work out. It is worrying that no new organisation may bid for the replacement contracts but an FSO with a history of failure could!

Lack of Learning

On day one Sharon Grant listed four “important learning points from our experience of the last couple of years that we should send to the Department of Health.” In summary these were:

1. People do want to be involved “We were able to recruit some 5000… in a short space of time.”
2. How you treat volunteers is important. Command and control is not appropriate.
3. Proper support costs money.
4. There need to be sufficient high–quality, paid staff

Here are my comments on three of these:

1. It is not enough to recruit numbers you need to recruit skills and experience sufficient to cope with the complexity of the NHS. Having recruited you need to retain. What learning can you pass on to the DoH on these matters?

2. As volunteers value being treated appropriately why deny forum members rights that CPPIH, FSO and other paid staff enjoy. Based on the experiences of forum members as volunteers we lack the right:
* to a preliminary assessment of a complaint and what evidence for it exists before the member concerned is informed by CPPIH
* to know who has made a complaint against them
* to receive copies of written statements submitted in support of complaints
* to be informed when and where incidents were meant to have taken place and the specific words or behaviours allegedly involved
* to timely investigation and reporting, even when suspended from duties
* to have an enquiry into events once they have resigned as a forum member
* to an independent investigation when CPPIH itself is accused of impropriety
* to any appeal independent of CPPIH, even when there are questions about the behaviour or motives of CPPIH.
(Further details of these matter available to forum members –email
new.paul.burns@btinternet.com )

4. Clearly FSO support staff have not always been able to help in the way intended. Has CPPIH documented what went wrong in specifying the FSO contracts so that mistakes are not repeated by the DOH? If they have conducted a thorough review, why havenÂt forum members been asked to comment on the lessons from it?

Paul Burns 13.6.05

Paul is Chair of the Patient & Public Involvement Forum for the Central & North West London Mental Health NHS Trust and a member of Brent PCT PPI Forum until the end of June 2005. He is resigning in protest at lack of rights for volunteers subjected to complaints and the lack of transparency in the award of FSO contracts. His concerns about forum support are not prompted by his own experience as chair.


Dear Mike,

We have a problem with your last piece. Meredith Vivian of Department of Health regards it as inaccurate in some respects. In this as in so much on the site I'm just the guy that uploads so I will pass your email to him via Malcolm Alexander and you can tell me if anything needs to be changed.

N. 09.06.05.

My attention has just been drawn to an article by Mike Cox which appears on the PPIF.org.uk web site.

The article (Suitable Jobs for Suitable People? - my parenthesis, Mike Cox) grossly misrepresents the person who is carrying out the specific piece of work for the Centre for Public Scrutiny - a personal attack of this kind should surely have gone through some kind of editorial control - it is both inaccurate and offensive.

Can you tell me who has control over what appears on the web site?

I would welcome an early response.

Thank you.


Meredith Vivian
Head, Patient and Public Involvement 09.06.05.


If Meredith Vivian would like to specify what was inaccurate and offensive I'm sure the necessary corrections will be made but he must be precise and specific. He should discuss this with Mike who insisted his article be published unaltered.

There has been considerable concern about the quality of staff appointments and circumvention of statutory instruments notably that staff provided work under the direction of members. You yourself reported some remarkable incidents to me. Mike's report has considerable resonance in Camden where we have been plagued with bogus complaints by support staff. Relentless criticism it seems is the only way we can reform the NHS and its supporting organisations. The inability of cleaners to clean, staff to wash their hands and doctors to abandon queuing are some examples of the gross failure of Management. The mistreatment and patient injury produced by an alienated culture are the primary concerns which must be systematically eradicated. Strong direct management is all that is required, routine in the hi tech private sector where error rates are also high. The Veteran's Administration Hospitals in US showed it can be done. DH and CPPIH should be supporting this reform, encouraging it and setting a good example of strong equitable management able to supply the necessary facts (some of which we are still waiting for from Mr Vivian). The Health Committee asks PPIFs to be "Critical Friends" and that is what we intend to be. This is not a threat, it is an opportunity for Whitehall if it gets its "Vision Thing" right. Maybe Meredith Vivian would like to discuss this with us further.
N. 10.06.05.


10 June 2005

Dear Mr Cox

Suitable Jobs for Suitable People?

You have been misinformed and so your article is inaccurate and libelous. My colleague was loaned to the CfPS to undertake work that would take 20 working days.

In the circumstances, I would appreciate you retracting this article at once especially those parts relating to the background and expertise of a member of my staff and offering a public apology to maintain your credibility.

Yours sincerely

Steve Lowden Chief Executive


Hello Mr Lowden.

Headline and full text of the piece in the the Shaping Health newsletter for PPI Forum members in the East of England, Spring 2005:

CPPIH and Centre for Public Scruitiny (sic) Work in Partnership-Brenda Cook, Regional Manager for the East of England Region of the CPPIH to Provide Expertise on new Guidance.

I would like to let you know that I will be changing my role within the Commission from 18 April 2005. I have worked for the Commission now for two years, firstly as an adviser during establishment of the Commission and then as Regional Manager. I joined because of my commitment to PPI and to seeing one organisation joiining up all the parts of the PPI agenda nationally, regionally and locally.

I am delighted to have been asked to take on an assignment to work with the Centre for Public Scrutiny to produce the guidance for joint working between OSCs and Forums as a result of the recent consultation. I had intended to leave my role at the Commission at the end of July, so we have decided it is best to recruit my replacement now and free me up to take up this assignment. Until my successor is identified, Fiona Wood, Director of Operations and PPI will be supporting the team in the East of England Regional Centre.

Although I do not leave the Commission until the end of July, I would like to say how much i have appreciated working with you. The commitment of members, FSO and Commission staff to making PPI real and effective has been nothing short of phenomenal and real strides are being made. I know you all want to take a key role in shaping future arrangements and I wish you all the best.

Brenda Cook.

Now if you can interpret that as `loaned to the CfPS to undertake work that would take 20 working days.` you must have a special kind of mind. Or is it yet more more CPPIH duplicity?

I made it clear in the article this was not a personal attack. I have made no allegations against the person other than she presided over the CPPIH failures in this area. I have a portfolio of evidence of those failures and am in touch with witnesses. You will know, of course, there is also a complaint currently being investigated by the Parliamentary Ombudsman. There is, in addition, as you well know, much concern over similar failures elsewhere in England.

You should also be aware by now that I have made a request under the Freedom of Information Act for the details of how this appointment was made. One of my concerns around this is a possible breach of Equal Opportunities standards and I will expect a full reply to this within the statutory time frame.

Yours sincerely.

Mike Cox.
PP Eyes, an independent public watchdog for PPI.


Dear Mr Cox,

I had hoped that my letter would have clarified the position and was meant to be clear and unambiguous.

Having re-read your article on the web I am very clear that legally it is going to be construed as a personal attack on an individual and, as such, I am asking you again to act in a responsible manner and withdraw the article.


Steve Lowden 10.06.05.



Sorry but I will have to pull it. Lowden is effectively my boss issuing an instruction. I feel easier about Vivian because he is a Civil Servant and CPPIH is an Arm's Length Body- but not much arm's length in the phrase used. We had a similar case with Malcolm Alexander's criticism of Sharon Grant. Lowden should specify what was inaccurate and libellous. When I can I will ask for clarification from Lowden and when his staff are criticised in future I will ask for his view. If PPIFO is to be hamstrung like this I too will have to consider whether it's worth continuing to a PF member.
N. 10.06.05.


Statement on the PPIFO website

Mike Cox's recent article has been withdrawn following complaints that it was "inaccurate and libelous" from Steve Lowden, CPPIH CEO, and Meredith Vivian, DH Head of PPI, who called it "inaccurate and offensive". In future we will check all criticisms of CPPIH staff for accuracy with CPPIH and ask them what level of allowable criticism of their Staff is acceptable. We ask what are the bounds for "Critical Friends"? Apologies to all concerned and we invite Steve and Meredith to clarify the official position on this question. Mike tells me he will be starting a website soon to be called PP Eyes. According to Google we continue to be the number one global source of PPIF information.

Please advise if this presents any difficulties for any of you.

N. 10.06.05.


FoI Officer,
CPPIH National Centre,
7th Floor,
120 Edmund Street,
B3 2ES.


Freedom of Information Act.

I am advised that Bernadette Beckett has been appointed to the post of Regional Manager for East of England CPPIH. Please confirm this and if it is correct:

Can you please tell me:

  • what the process of the appointment was;
  • how many candidates for the appointment were there;
  • how and where the appointment was advertised;
  • what was the make up of the interview panel(s);
  • was there independent scrutiny of the appointment;
  • was the appointment made under the aegis of the NHS Appointments Commission and if not, which was the inspection/scrutinising body;
  • were service users (your term patients) and carers involved at all in the appointment;
  • what were the essential qualifications and requirements for the post?

And can you please clarify which, if any, CPPIH posts come under the scrutiny of the Office of the Commissioner for Public Appointments.

I look forward to your reply.

Yours sincerely.

Mike Cox. 11th June, 2005.


Hello Nick.

Tied up with grandchildren. Phone you Monday. Hadn't thought of you being anything other than independent - what a gag!


No we are but as a Forum Member we have to obey legal instructions from CPPIH. The status of my membership is another question I am currently in dispute with Lowden too. So tricky. Will tell you the story when the smoke has cleared.

N. 11.06.05.


Re: suitable jobs for suitable people

Hello Nick.

I guess what your friend is talking about is: the debacle called PPI in the area where I live, and responsible for inaugural inaction, equivocality, incompetence, disability discrimination (myself). The rest is opinion (`I believe`) and there is a good basis for that opinion - see the attached.

CPPIH and Meredith are well used to the particular allegations of mine in that sentence. I have been in correspondence with them, Brenda Cook, Sharon Grant, Laura McMurtrie, Steve Hilton, Fiona Wood and Steve Lowden (and Harry Cayton - and was invited to a meeting with him and Meredith in the Autumn of last year) since PPI started to be wrecked. My `allegations` about their irresponsibility and incompetence in not CRB checking their volunteers led them to eventually deciding they had to do that. I suppose the significant difference between PPIF and myself is that I am definitely NOT a `critical friend`; I'm highly critical opposition.

See a previous article which I have attached. And I have verification of the allegations: letters, e mails, Forum reports, contacts with witnesses. CPPIH and MV know this and that is why they haven't tried the heavy approach with me, an ordinary NHS user and totally independent member of the public. With PPIF, unfortunately, Lowden and Vivian jumping up and down crying `offensive and libelous` has been successful because you are obviously not fully independent - there's a Big Brother element there, isn't there (that's not a criticism - I fully understand your position - its an observation about the reality).

What I would like is for you to publish my statement. I think that establishing CPPIH's responsibility for the only innacuracy in my article is important. And it is clear evidence of equivocality! Let me know when I phone you tomorrow - I will post it and the article on the web discussion groups and my website anyway.


Mike. 12.06.05.


Mike I have no doubts about the factual accuracy but in that piece you have to boil it down to produce a fact proving your opinion. It's hard to do, don't get me wrong but it the shorter and more memorable you can make it the more attention you will get. As you know we are calling for an independent inquiry in Camden and you make like to contribute to it once we get it together. It may be some months away yet because the situation is still unresolved for many of us facing disciplinary proceedings. All bogus as far as I am aware. I'm sorry but I won't publish your statement I agree they made a mistake but it will be useful to you when you put up your own account in due course. But do be careful. This is a rotten job but it needs doing and we must do it carefully if we are to succeed and make sure that in future nothing like this can happen again. At bottom this is all about improving patient safety and the further we are driven away from this the less effective we become in my view.

Any further help I can be I'm at your disposal but make no mistake I am no poodle of the establishment I am a reformer of the Public Service. Checkout the site: we are not pulling any punches. Happy to announce your developments and consider any further contributions.
N. 13.06.05.


Dear Mr. Cox,

As a citizen you are bound by the laws of the land and, as such, I believe your efforts would be best placed contributing positively to the PPI debate.

You are, of course, personally liable for materials you write and place in the public domain. You may find it helpful to take appropriate advice of the potential consequences before publishing this type of material.


Steve Lowden

Steven Lowden
Chief Executive
Tel: 0121 222 4537
Fax: 0121 222 4511 16.06.05.



Good luck with the website we will advise everyone when you are ready. Still happy to carry material from you Mike but I thought you personal statement was too much a personal attack on Lowden. We had a similar problem with Malcolm Alexander's Private Eye letter which attacked Sharon Grant last year. Solicitor's letter no less.
If you want to submit a revised "Suitable Jobs.." no problem as discussed. Lowden has agreed to check the facts and said he doesn't want to be seen as gagging. As I see it the problem for them is to maintain their authority in their death throes and if we form our own transitional authority via the National Forum mechanism we might emerge with more autonomy as the Commission, embodied in Sharon Grant's Convention address, seems to want. CPPIH mammoth, Kafka or Kryptonite? You decide. That analogy need some work- not right yet.

N. 19.06.05.


Dear Mike,

I am now going through stuff that I have had to postpone while I deal with the last nonsenses. I have decided to make a collection of issues where complaints have apparently been mishandled. It is understood and acknowledged that these accounts will be one-sided. The immediate aim is to see if, as I suspect, there is a pattern. They will all add to our dossier of information. Long-Term I hope to anonymise any that are suitable and, with the approval of the protagonists, put them on the websites.

So really, this is an invitation to add to my files, and to invite others to do so too. Anyone contacting me can count on absolute discretion - I ca n supply references! I seem to have become self-appointed Complaints Officer for the nascent UK Forum Members Organisation.

Best wishes 28.06.005.


Dear Mr Cox

Freedom of Information Act Request

I write with reference to your letter of 7 June 2005, requesting information about the selection of a member of staff from this organ isation to work with the Centre for Public Scrutiny on the production of guidance on joint working between Health Overview and Scrutiny Committees (OSCs) and Patient and Public Involvement Forums (Forums).

Your letter indicates that you are under the impression that an appointment to a post has been made. This is not the case. It was not an appointment to a post. CPPIH made available to the Centre for Public Scrutiny a member of staff to undertake a short-term time limited piece of work.

In March 2005, a Ministerial statement was made on the outcome of a consultation undertaken by the Department of Health and CPPIH on the future support needs of patient and public involvement in health. In the announcement, it was stated that the Centre for Public Scrutiny would produce guidance on joint working between OSCs and Forums in June 2005.

The Centre for Public Scrutiny and the CPPIH agreed that the work should be undertaken by someone with experience of both OSCs and Forums. A member of staff, currently employed by the CPPIH, was in the unique position of having worked on the development of the legislation on health overview and scrutiny and produced the national guidance on this topic for the Department of Health, as well as having worked on the establishment and support of Forums for the CPPIH for the last 2 years.

This officer supported the work being undertaken by the Centre for Public Scrutiny for a period of approximately 20 working days to undertake the assignment.

I can confirm that the process of producing the guide included the involvement
of Forum members and members of OSCs.

I hope that this clarifies the situation for you.

Yours sincerely

Fiona Wood. 29.06.05. But see 213


From the Health Voice Network.

Do you know your statutory powers? [14/07/2005]
Section 15 of the NHS Healthcare and Professions Act 2002 -
(5)if, in the course of esercising its function, a Patients' Forum becomes aware of any matter which in its view:
(a) should be considered by a relevant overview and scrutiny committee, the Forum may refer that matter to the committee,
(b) should be brought to the attention of CPPIH, it may refer that matter to the Commission.
(6) Subsection (5) does not prejudice the power of Patients' Forum to make such other representations or referrals as it thinks fit, to such persons or bodies as it thinks fit, about matters arising in the course of its exercising its functions.

Furthermore, section 20 states:
(3) It is also the function of the Commission to promote the involvement of members of the public in England in consultations or processes leading (or potentially leading) to decsions by those mentioned in subsection (4), or the formulation of policies by them, which would or might affect (whether directly or not) the health of those members of the public.
(4) The decisions in question are those made by -
(a) health service bodies,
(b) other public bodies, and
(c) others providing services to the public or a section of the public.

These powers relate to not just the NHS but any organisation or committee.

So all I can say is be pro-active and pick intersting areas your (constituency group) patient and public are interested in. One method I used was to analyse the Census 2001, and the demographics and statistical mapping of the ward areas the PCT PPI Forum boundary covered. I discovered a high proporation of older people (65+) who were living alone in deprevation. This straight away gave me a mandate to contact Age Concern, Older People Advisory Group, Help Aged and ask about issues of concern, still waiting for my Forum Support to contact them after 3 months, but thats another matter.

We did manage to impact on the closure of a Day Care Centre for older people and that was gratifying to know that we were able to add some value to airing peoples concern in a public meeting and that was contained within the minute of that meeting, and the Birmingham City Council Health and Social Care Cabinet Member was fully cooperative and attended that meeting.

Good luck! Stuart Copeland, Position: Chair/Member, Organisation: North Birmingham PPI 19.07.05.


Congratulations on a great job, Mike. http://www.ppeyes.co.uk

I've not read everything on the site yet but I am impressed with what you've done - a very complicated job. Very nice that you put a photo of yourself up too. That personalises the site and makes it friendly as do the baby images and I also really like the main logo. And great name for the site also.

I haven't read all the text yet but "circular incestuousness" comment jumped out - a little tautological maybe but it stresses the truth of the situation.

No criticism whatsoever but I have one suggestion which I think would help people understand the complexity - a glossary and a who's who and what's what. For example you explain what a QUANGO is but not that it stands for Quasi Autonomous Non-governmental Organisation. And I think it would be good to have a very concise history showing how the PPI has evolved from the Community Health Councils which was highly structured, replaced by very little in the way of an organisation. And I think a special mention for Nick Green's PPIF which serves a very special role as "Critical Friend".

Can I suggest also Mike that you add the link to your site on all messages posted, with the strapline so that will be reminder what it is.

Thank you very much for linking into my site and this discussion board. I think we do all need to co-ordinate our separate activities.

I'd like to suggest also that all of us think about entering this competition which is being launched this year by Private Eye/The Guardian for investigative or campaigning journalism. As you can see from the details below, this is ideal for us as it is open to individuals and teams, and the entries can be from any media, including the web. I am thinking of using a posting or postings from mentalmagazine, to do with the complaint with the CPPIH first raised by Des Curley. And perhaps a number of us who make submissions on the theme of accountability in health monitoring - highlighting the various ways that the CPPIH is failing.

Here are the details of the competition. I have spoken to Ben Tisdall already, so do contact him with any questions (I'll also post this in a separate message):

In memory of Paul Foot the Guardian and
Private Eye are launching an annual award for
investigative or campaigning journalism. The
prize for the winning piece of work will be £10,000.

Individual journalists, teams of journalists or
publications may enter and all entries will be
considered - from single pieces of work, to
entire campaigns.

Closing date September 12
The award will be presented on October 11

Please send entries to:
Paul Foot Award, National Union of Journalists,
Headland House, 308-312 Grays Inn Road,
London WC1X 8DD.

For further information please contact:
Ben Tisdall, Midas PR
Telephone: 020 7584 7474

Terms and conditions
1. Work to have appeared between October 2004 and August 2005.
2. Two copies of the article or articles to be submitted as well as publication in which they appeared (submissions will be accepted for anything that has appeared in a newspaper, magazine or website, but no broadcast material will be eligible.
3. Entries non-returnable
4. Entries will be acknowledge but no further correspondence wil be entered into.
5. The judges' decision is final.
Surrey UK
"Campaigning for good health & social care...it's for everyone"



Hi Mike,

Great website. It's also really encouraging to see people with principles determined to get their and other peoples voices heard and helping to level the playing field a bit. Well done.

On CPPIH front I now have a complaint in against Steve Lowden as he dismissed a complaint I had made about CPPIH Chair Sharon Grant wrongly accusing me of " witholding evidence " and "wasting ' his
(Lowden's) ' valuable time ".

Lowden dismissed the complaint by stating that he accepted that " I had not deliberately witheld evidence', a legalistic phrase intended to dilute and justify the accusation rather than apologise for it.

In fact I did not deprive the CPPIH of any evidence but as Investigating Officer Steve Lowden did as he did not even bother to ask David Crepaz Keay for a copy of the material I actually complained about even though I'd made it clear that the material vanished offline shortly after I complained to David about it.

After making no attempt to obtain the material he was supposed to be investigating Lowden then advised Sharon Grant that the fact that the material was missing meant there was no evidence to support a case.

Dr Lowden obviously has no qualms about abusing his legal knowledge and position to protect himself and his friends from legitimate complaints however as I spent a significant amount of time recovering evidence for the CPPIH after Commissioner Crepaz Keay deliberately deleted it I am now taking Sharon Grant's lead and invoicing the CPPIH for £500 for wasting my valuable time.

The following is the last communication I had from Lowden. For the record, his non-investigation of the material I actually complained about isnt an opinion its a fact.

Dear Mr Curley

Thank you for your email dated 20 July.

I have noted your comments and appreciate that you are expressing your opinion regarding the investigation.

As stated in my letter dated 19 July, if you confirm that I can pass on your contact details to the NHS Appointments Commission, I will inform them that you are unhappy with the result of the investigation.
It will then be up to them to decide how or if they intend to proceed with this matter.

As requested, I have arranged for a copy of the Commissionâ•˙s Complaints Policy to be posted to you, and the CPPIH Freedom of Information Officer will deal with your FOI request.

Yours sincerely

Steve Lowden
Chief Executive


Des 24.07.05.


Dear Mike
I have been on your website, and what a gem it is.
I have been a PPI forum member since Dec 2003 with North Bristol NHS Trust and South Glos PCT, alls well with South Glos but with North Bristol NHS Trust it is a different matter, up until July 2004 the Trust Forum was in my opinion the most active in the country but with the weakness of CPPIH both at regional and National level they brought about version 7 of the PPI forums members handbook to deal with our chair who has only 1 week ago resigned due to constant investigations into his activities (although mandated by the forum)
North Bristol NHS Trust was not ready for PPI activities as at Dec 2003 rather they were dealing with an overspend of £46 million pounds and the chair of the trust was very guarded to his Board, but maybe with the arrival of a new Director of Nursing will the situation change.

For the future forums should have input into FSO contracts, before I forget Brenda Cook was in Bristol last week at the request of Barry Taylor to assist in joint training for OSC's and PPI forum members, the training itself was a waste of time as brenda and barry did not provide any additional guidance that was not already in place.
Keep up the good work cannot wait until August 2006 most CPPIH staff are already moving on to include Brenda.

Yours Faithfully. Frank Palma, 25.07.05.


"Margaret Demian" <Margaret.Demian@cppih.org>
Date: Wed, 27 Jul 2005 13:39:22 +0100
To: <micox@btopenworld.com>
Subject: KMS contribution

Dear Mr Cox,

Thank you for submitting two contributions to the KMS as public contributor 171 on 25th July 2005.

We have a set of moderation guidelines intended to enable the exchange of opinions about issues affecting health and in doing so accept a wide range of opinions and views whilst at the same time ensuing that the Commission and Forum members are not at risk of litigation as a result of publishing material.

The relevant section of the moderation guidelines states that:

“You must not use the KMS for any of the following purposes (“Unacceptable Use”):

· Recording, publishing, transmitting, linking to, disseminating or making available in any way any unlawful, harassing, defamatory, abusive, threatening, harmful, vulgar, obscene, racist or otherwise objectionable material on any part of the knowledge management system including the discussion boards.”

When there is a link we apply the same moderation guidelines to whether the link should remain by considering the content of the target website. If the content on www.ppeyes.co.uk <http://www.ppeyes.co.uk/> was on the KMS there are a number of areas that we would need to moderate as they would fall outside our guidelines and therefore we have moderated the link and published the remainder of your contribution in full.

Yours sincerely,

Margaret Demian
Head of Knowledge Management
Tel: 0121 222 4551

Commission for Patient & Public Involvement in Health
National Centre - Birmingham
7th Floor, 120 Edmund Street
Birmingham, B3 2ES
Tel:0121 222 4500
Fax:0121 222 4511
www.cppih.org <http://www.cppih.org/>



I have put a link to your website (and to PPIFO of which I was not previously aware) on the Campaign website with effect from its next update.

I am an active Forum member, but find I am restrained by colleagues who don't want to upset anybody. For example I was reprimanded for asking questions through the PCT's website and in the public forum at PCT

I am unimpressed by CPPIH. But the former CHC covering the Rugby area was ineffective and had lost its way.

I have my own website (Google rank 4, same as PPIFO) on which I can put things that are not necessarily agreed by the Forum.

Sheila Porter-Williams
Campaign for Health Service Democracy
Green Haven, Halfway Lane
Dunchurch, Rugby, CV22 6RD
----- Original Message -----
From: <sheila@healthdemocracy.org.uk>
To: <sheila@porter-williams.freeserve.co.uk>
Sent: Tuesday, July 26, 2005 7:16 AM
Subject: [Fwd: patient and public involvement in health]


Quite liked the look of this site http://www.ppeyes.co.uk/ . Nice bit of campaigning and well done to the author !

Rita Pal 30.07.05.


Hello Mike

I was pleased to see that like myself you are a patient. I have been a member of HVN for several years and like most consultation processes it has been 99%+ career NHS staff. Apparently you have stayed with PPI, I got out. I went to the inaugural meeting expecting it to be a nice little informal getting to know each other group. What did I find? 2 HAP reps one of whom had already been working with the Chair- retired Social Worker - and two other members. We were meeting round a table, boardroom set up. Also present, CPPIH rep. Chief Executive and PALS Manager from local Hospital Trust. The meetings for the next two months had dates already set, I said I could not make two of them. This was not to my thinking a correct interpretation of 'inaugural' nor an equal start for each person. When I received the minutes of that 'inaugural' meeting I was apparently the only person without any active involvement. I resigned and wrote a very strong
letter to CPPIH. Credit to the CPPIH person who just listened whereas one of the HAP advisers was obviously running that PPI. I heard just two weeks ago that they only have four members now. Several times I have been invited back, no chance.

If you want to know about Health Inequalities try to find support from NHS for persons whose primary disability is lack of oral communication. My vocal chords were removed due to cancer 11 years ago. I recently walked out of a consultation workshop in disgust. In the first one the facilitator had sat
with his back almost to me, when in the second workshop my third attempt to make a comment was ignored, I got up, left very obviously and entered a written complaint, no reply to it.

Personally I think it is time to remind all NHS from basic up to the top just who pays their salaries They also need very strong advice as to the real meaning of PUBLIC SERVICE..So much public money is being wasted in consultation exercises which too often end up as NHS/Social Service staff meetings. The rare patients attending are often retired NHS staff.

Louise 11.08.05


Dear Mr Cox
I have been passed your letter dated 11 June 2005, received at the office on 3
August 2005. Further to your request under the Freedom of Information Act
2000 (the Act), I set out the responses to your queries below, in the order that
you raised them:
1. It is correct that Bernadette Beckett has been appointed to the post of Regional Manager for the East of England CPPIH.
2. the process of appointment involved the position being advertised internally for one week.
3. In total there were 4 candidates considered for the appointment.
4. the appointment was advertised internally via e-mail.
5. the interview panel consisted of the Director of Operations & PPI,South and the HR Manager,South
6. there was no independent scrutiny of the appointment.
7. the appointment was not made under the aegis of the NHS Appointments Commission, nor was there an inspection/scrutinising body as this it is not requisite in the process of Commission staff appointments.
8. there were no service users or carers involved in the appointment.
9. the essential qualifications and requirements for the post are attached for your
10. No CPPIH posts come under the scrutiny of the Office of the Commissioner for Public

Lorain Rawlins,
Operations and Governance Manager, CPPIH (11.08.05)


(to Equal Opportunities Commission) Hello.

I have been concerned about the employment policies and practices of the Commission for Patient and Public Involvement in Health for some time. Of particular concern is what appears to be a culture of sliding known people into vacant positions without giving others outside the organisation the opportunity to apply for these.

To try to find out more I made a Freedom of Information Act request about a particular recent senior management appointment. I have just received their response which bears out my concerns. This is attached (above at 231)

Can you please comment.


Mike Cox,
PP Eyes, an independent public watchdog for PPI. 12.08.05.



3 issues:

1. Prescreening. Such a process of going from longlisting to shortlisting should be visible, work to the same clearly set out criteria as those being used for the interview itself and those undertaking the prescreening should be clearly identified. Is this the case? If it isn't, why not?

2. Restricted choice of potential candidates. As far as I know, there is no agreed arrangement for transfer of staff (TUPE) from the FSOs to CPPIH in the event of contracts not being rolled over, and equally no contractual obligation between CPPIH and FSOs for CPPIH to employ FSO staff facing redundancy. If I'm right on both points, it must be a breach of CPPIH's equal employment opportunities policy if these posts have not been advertised externally. The selection panel has been denied the best field of candidates from which to make a choice for a post which cannot be regarded as temporary. I'm not unsympathetic to the plight of those FSO staff facing redundancy but see no reason for them to be treated differently from other people when it comes to being appointed to work for CPPIH.

3. Level of satisfaction. You are absolutely right that the CPPIH procedure is crude and unsatisfactory. Particularly given prescreening, the reasonable presumption must be that all those being interviewed wholly or very largely satisfy the minimum criteria. The purpose of the interviews is therefore to establish how well they satisfy those criteria and to be able to discrimate legitimately between those who barely cover the criteria and those who offer greater skills, knowledge, understanding and experience. Most organisations I know using a scoring system (1- very poor/unacceptable, 5 -excellent) to help with the decision making.

Hilary 13.08.05.


"Mandy Lawrence" <mandy.lawrence1@ntlworld.com>
Reply-To: nimhe.eastern.sun@smartgroups.com
Date: Tue, 16 Aug 2005 19:47:13 +0100
To: <nimhe.eastern.sun@smartgroups.com>
Subject: Fw: [NIMHE.Eastern.SUN] Key Issues.....Is it coz I is MentalllyIncapacitated?

Eek! Need a lie down..just sent a ruddy e:mail to myself!!!

Ron's turn to ignore me I think.x

Subject: Re: [NIMHE.Eastern.SUN] Key Issues.....Is it coz I is MentalllyIncapacitated?

Have had a look at the ears, nose and throat section (s'cuse jape).

Looking good. I think I will be needing to use ICAS later in the week and so will keep you updated on just how useful they turn out to be.

As for PPI....I have yet to meet a service user from this forum. SUIP did give an open invite for any PPI member (who is a service user) to come along to the meetings we are holding across the county. However, the PPI Manager (Trust employee) was the one who asked if we wanted anyone from the Trust at our meetings, to help with admin!!!!!??????!!!!!! Like...No, we don't.

He has pushed on this a couple of times....but.... and I might just be being paranoid....I got the feeling it was as a mole. Sorry to say old habits die hard and the last thing I need is someone sniffing around and tittle tattling back at Chase HQ. The Trusts will get a copy of the report when it is done. To have Trust managers at meetings at meetings organised soley for service users is nowhere near viable. Considering service users have rarely been asked anything in the past...it would just give the impression that SUIP are acting on behalf of the Trusts and with the Trusts' interests as paramount.

I may be green but no way am I a cabbage.

I think that shows my views of how the PPI is working in Beds. I might change my views at a later date but, as yet, I have seen no real evidence of service users being encouraged to work together despite SUIP asking for this to happen.

Please feel free to add this to your board, if you feel it has any relevance.



Dear Mike Cox,

Thank you for your email of 12 August 2005.

The Equal Opportunities Commission was set up under the Sex Discrimination Act 1975 (SDA) to work towards the elimination of sex discrimination and to promote equality of opportunity between men and
women. The SDA makes it unlawful to discriminate against a person because of their sex in the contexts of education and employment, and in the provision of housing, goods, facilities and services to the public.

We have good practice guides and information on our website around recruitment:



This guidance does not address the specific issue of internal and external recruitment or promotion but we do encourage organisations to recruit from as wide a pool as possible.

However, this approach may not be appropriate for every vacancy. We understand from the CPPIH website that it is due to close in 2006, and this may be affecting its recruitment practices.

If you wish to take your concerns further, you may wish to contact the sponsor body responsible for the CPPIH, as well as looking at other organisations' guidance on recruiting staff (some contact details

Commission for Racial Equality
Tel: 020 7939 0000
E-mail: info@cre.gov.uk
Website: http://www.cre.gov.uk

Telephone: 08457 47 47 47
Website: www.acas.org.uk

Disability Rights Commission
DRC Helpline: 08457 622633
E-mail: enquiry@drc-gb.org
Website: http://www.drc-gb.org

I hope this is helpful.

Yours sincerely,

EOC Helpline Adviser


Dear Sharon Grant (31.08.05.)

Complaint about The Psychotic website and David Crepaz-Keay

I sent you the email below on 5 June 2005 but have never received any reply from you.

However, I know that the email was received because when Des Curley had a personal meeting with Steven Lowden (CPPIH Chief Executive) at the CPPIH offices in Birmingham on 16 June, he was assured by Steven Lowden that I would be receiving a reply with answers to the six questions that I raised in my email of 5 June:

1. Why the website was set up, what its purpose was and who it was intended for.
2. Whether it was advertised anywhere other than on the UKsurvivors discussion board.
3. Who paid for the site.
4. The identity of the co-workers on the site.
5. What connection it had to Mental Health Media and David Crepaz-Keay's job there.
6. Whether David Crepaz-Keay's employers - the Chair and Management Committee of MHM were aware of the site, and if they are aware of the complaint.
7. Why the website was taken offline.
8. Whether there is an intention - suggested from the message online - to revive the site at some point. If so, why?

Since the meeting on 16 June, David Crepaz-Keay has left his job as Chief Executive of Mental Health Media http://www.mhmedia.com/ and been appointed as Senior Policy Advisor on Patient and Public Involvement for the Mental Health Foundation. But we only learnt of this from a news release, 21 June 2005, on the Mental Health Foundation's website http://www.mentalhealth.org.uk/page.cfm?pagecode=PRNR0521 . Mental Health Media has never announced David Crepaz-Keay's departure nor advertised the position. He remained as Chief Executive on the Mental Health Media website for some time after his new appointment; and recently, without explanation, the information has been changed to show that an existing member of staff, Maggie Gibbons, is now the Chief Executive.

Another press notice on the Mental Health Foundation's website on 27 July http://www.mentalhealth.org.uk/page.cfm?pagecode=PRNR0528 says:
"The Mental Health Foundation is not a direct service provider, and receives just under 85% of its income from voluntary sources. It recently appointed David Crepaz-Keay as a Senior Policy Advisor on Patient and Public Involvement. The new post will see David promote the voices of service users throughout the Foundation's policy, service and practice development work."

David Crepaz-Keay will be one of the speakers at the Capita Conference on 22 September "Delivering Joined Up Mental Health Services to the Community". His slot will be on User Involvement - "Promoting the Voices of Service Users and Carers".

I do not think that David Crepaz-Keay can be considered a service user/disabled person since he has not used mental health services for many years. (I said in the 5 June email, around 20 years; since then I have checked and it is actually around 15 years, still a very long time). And he quite definitely cannot represent the interests of "carers" - he became known when he was Chair of Survivors Speak Out - an organisation that promoted the autonomy of the "survivor".

With regard to the CPPIH, where I live - NW Surrey - we have recently had a change of NHS Trust to one covering a much wider area. That is, the Surrey and Borders Partnership NHS Trust which came into being on 1 April 2005. Since the beginning of the year, I have been holding two group meetings a month and in June our speaker was John Christie who has been in charge of user involvement in our area since 1997. He is currently working on a user and carer strategy for the new Trust. During the meeting, we talked about CPPIH and PALS (Patient Advice and Liaison Service). We have no PALS service at all covering the mental health trust (although there is a service for other NHS services) and Mr Christie described the CPPIH as being in "total disarray throughout the country".

From what I've seen, it seems to me that the CPPIH and the forums cannot work because there are no proper structure or accountability, having replaced the Community Health Councils (CHCs) which were highly structured and accountable.

I would like answers to the questions I raised in June as soon as possible, please. A watchdog body should surely be able to deal with challenges to its own organisation.

Yours sincerely
Rosemary Moore

----- Original Message -----
From: rosemary moore
To: Susan.Lees@cppih.org ; Steven.Lowden@cppih.org
Cc: mentalmagazine@yahoogroups.com ; uksurvivors@yahoogroups.com
Sent: Sunday, June 05, 2005 8:23 PM
Subject: [mentalmagazine] Complaint about The Psychotic website and David Crepaz-Keay

To: Sharon Grant, Chair, Commission for Patient & Public Involvement in Health (CPPIH), Birmingham

Dear Sharon Grant

I am writing in response to the Chief Executive, Dr Steven Lowden's, report to you on his investigation into the complaint made by Des Curley about David Crepaz-Keay and The Psychotic website. Des (email name Wonderfullynutty) posted this report on the UKsurvivors Yahoo! discussion board on 2 June and asked for it to be circulated and I have subsequently put the report on my Yahoo! board together with some background to the issue and a link to the press release on the Mental Health Media site about David Crepaz-Keay's appointment as Director of MHM in March 2003 .
My 2 June message can be found at http://health.groups.yahoo.com/group/mentalmagazine/message/5628 .

My interest is:

I found The Psychotic website from a message posted on the Yahoo! UKsurvivors board on 21 August 2002 from Katie Brudenell of the MHM, under the heading "amusing website" and described as "for fans of adbusters with a mental health theme!" .
This message from Katie Brudenell can be found at http://groups.yahoo.com/group/uksurvivors/message/8740 .
I subsequently promoted and discussed the website on my own board (mentalmagazine) and corresponded with the anonymous "Editor" - unaware that this was David Crepaz-Keay. (The emails quoted by Des Curley are from some of the exchanges between myself and David Crepaz-Keay.) Cully Downer who organised the NO Force 14 September 2002 protest against the draft mental health bill, also had what he called "some cryptic chats with Ed" and I do not think he was aware who it was.

I had always wondered who was responsible for the site and recently asked Des - who had not been involved with UKsurvivors or my board in 2002 - if he knew anything about it; he was able to trace the ownership to David. Until Des made his complaint, the pages were stored in http://web.archive.org/web/*/http://thepsychotic.org.uk . The pages have now been removed from the archive.
Now all that is available in the archive is the following message that can be accessed online anyway at http://www.thepsychotic.org.uk/

"the psychotic detained
The psychotic is currently being detained under Section 2 of the 1983 Mental Health Act.
Please e-mail editorial@thepsychotic.org.uk if you wish to be notified of the psychotic's release."

This message has been online since the website was removed at the end of 2002.

I think this matter requires investigation and explanation both from the point of view of David Crepaz-Keay / Mental Health Media and the Commission for Patient & Public Involvement in Health (CPPIH).

Dr Lowden concluded in his report to you that the complaints raised by Des Curley did not warrant further action because:
i) The ownership of a website per se does not constitute a breach of the Nolan principles on the part of Mr Crepaz-Keay.
ii) With only very limited evidence of the website's content, it is not possible for me to investigate the complaints made by Mr Curley about its intended or actual effects on mental health professionals, or others working in the field.
iii) The anonymity afforded to those using the website is not per se an unusual or compromising practice which could be regarded as a breach of Nolan principles by an individual associated with it.
iv) The location of the website and its relationship with that of MHM, is not a matter of relevance to the Commission.

I had not heard of the Nolan Principles before, so have looked at these on:

Two of the Principles are:
Holders of public office are accountable for their decisions and actions to the public and must submit themselves to whatever scrutiny is appropriate to their office. Holders of public office should be as open as possible about all the decisions and actions that they take. They should give reasons for their decisions and restrict information only when the wider public interest clearly demands.

Dr Lowden's report does not, I think, fulfill the requirements above. That is, to submit David Crepaz-Keay's actions and decisions to scrutiny and require him to be open. Although Dr Lowden answers each point of the complaint and says that he has spoken to David Crepaz-Keay (though not to his superiors), these questions have not been dealt with:

1. Why the website was set up, what its purpose was and who it was intended for.
2. Whether it was advertised anywhere other than on the UKsurvivors discussion board.
3. Who paid for the site.
4. The identity of the co-workers on the site.
5. What connection it had to Mental Health Media and David Crepaz-Keay's job there.
6. Whether David Crepaz-Keay's employers - the Chair and Management Committee of MHM were aware of the site, and if they are aware of the complaint.
7. Why the website was taken offline.
8. Whether there is an intention - suggested from the message online - to revive the site at some point. If so, why?

I do not think Dr Lowden's conclusions are satisfactory because:

i) The ownership of a website per se does not constitute a breach of the Nolan principles on the part of Mr Crepaz-Keay.

The ownership hasn't been investigated. There are unanswered questions - see above - which would show if there is a breach.

ii) With only very limited evidence of the website's content, it is not possible for me to investigate the complaints made by Mr Curley about its intended or actual effects on mental health professionals, or others working in the field.

The "only very limited evidence of the website's content" is as a result of the pages being removed from the archive site after the complaint was raised, but Des Curley was able to retrieve the full text and he had already saved one page from the site which is in the Photos section of the mentalmagazine board. The text from the site is in the message Des Curley posted on UKsurvivors on 2 June and I put it on the mentalmagazine board that day. I will refer to some of it later in this email.

iii) The anonymity afforded to those using the website is not per se an unusual or compromising practice which could be regarded as a breach of Nolan principles by an individual associated with it.

I think this is a very unusual indeed and extremely compromising in the circumstances.

iv) The location of the website and its relationship with that of MHM, is not a matter of relevance to the Commission.

This DOES seem relevant to me.

I had some email exchanges with Katie Brudenell following her posting on the UKsurvivors board, and she gave absolutely no indication that the website had anything to do with Mental Health Media. It appeared that MHM was simply advertising the site. Furthermore, The Psychotic was NOT - as far as I know - advertised on the MHM site (or indeed - to my knowledge - anywhere else other than the UKsurvivors discussion board).

I'll go through what I think is the most relevant the text from the website that Des Curley posted in his message to UKsurvivors, and which was also posted on mentalmagazine on 2 June, only some of which has been dealt with by Dr Lowden.
(For full text of complaint and response :http://health.groups.yahoo.com/group/mentalmagazine/message/5628)


I will attempt to describe the illustrations accompanying the following text: A man in a straitjacked, looking as if he is falling over

Over-medicated schizos cover-up probe
The end of the line for the "I was only following the treatment plan" or so-called "Nuremberg" defence?
Sectioning for beginners P.122
"Pesky" Patients Problem? P.30
Clinical uses for tear-gas P.130
Drugging and drug issues for Drugsmen
News in Brief

This I think was the opening page - PHARMERS WEEKLY - a play on Paul Farmer's name who was also referred to as "Pill Pharmaceutical" elsewhere. Paul Farmer is the Director of Public Affairs for the charity Rethink Serious Mental Illness (previously known as the National Schizophrenia Fellowship, under which name it is still registered with the Charity Commission). Paul Farmer is also the Chair of the Mental Health Alliance.

Another page - just text - dealt with the cancellation of the Mental Health Alliance march and rally which was to have taken place on 14 September 2002, two days before the closure of the consultation period for responses to the first draft of the Mental Health Bill. It was cancelled on the grounds that the protesters would be subjected to harassment from the public as a result of the arrest of Ian Huntley for the murders of the Soham schoolgirls. On 2 September Sahid Shardar posted a message on UKsurvivors warning that the march had been cancelled http://groups.yahoo.com/group/uksurvivors/message/8829
This is what The Psychotic said:

Alliance postpones challenging stigma until public opinion is "more favourable"

It went on to describe the Mental Health Alliance as:

The Unholy Alliance, a collection of mentally healthy charities, today called off its planned challenge to discrimination and stigma in the light of recent items published in the Daily Mail suggesting that the public may, in the current climate, be prone to discrimination and stigma.

Paul Farmer from Rethink (Pill Pharmaceutical / Restructure ) is quoted:

PILL. As Unholy Alliance chair, Pill Pharmaceutical, of Restructure, explained to The Psychotic, "We are in a very difficult position, on the one hand we need to break the link that the public has between madness and violence, but on the other, we don't want to upset anyone at this sensitive time. The last thing we want to do
is to give the media the chance to make any connection between mad
people and the events in Soham, so hopefully they won't read our press release which mentions both."

Richard Brook, CE of Mind (Dick Stream) is quoted:

BALL. The death of the story was given further momentum by comments from
Dick Stream, of Mind , which no-one can remember.

A "group of survivors" - these were the people (including myself) led by Cully Downer who set up the march anyway on 14 September 2002

Marjorie Wallace of SANE is quoted:

NUT. In a moment of group insanity, a number of survivors decided they were against discrimination and stigma anyway, but, as another spokesman for the Unholy Alliance, Countess Marmite Wallaby said "they're mad, so we don't expect anyone to pay any attention to them."

KNACKER. No one from Liberty was available to give two hoots.

Another page of text that spoofs both the renaming of the National Schizophrenia Fellowship (now Rethink); the reference to the National Service Framework (NSF) is one of the reasons the charity gave for needing to change the name, so that it wouldn't get confused with the Framework.
The charity was also campaigning or patients to have new "atypical" and much more expensive drugs. It is claimed that the atypicals have fewer side effects than the older drugs but this has not proved to be the case, particularly with regard to weight gain.

Clive Previous is Rethink Chief Executive Cliff Prior:

Charity Chief calls for access to "latest and best" Clive Previous, Chief Executive of Rebrand, has demanded that all mad people are given access to the latest modern logos. "Many thousands of people with NSF are stuck on the old-fashioned logos, sometimes for years on end," said Previous, "and this causes severe confusion, particularly with the proliferation of National Service Frameworks".

"Most of today's modern logos have far fewer side effects, and the average member need not be exposed to a rebranding exercise for many years."

This refers to the Mind charity's change of logo from a dove. It is now a squiggly piece of string.

TURKEY. Mind, the National Association for Doves, supported the call for newer
logos. Said Chief Executive, Dick Stream, "Doves no longer adequately represent our commitment to people with Mind Membership, we will be pressing for the adoption of a turkey as our logo of choice".

SOS is SSO - Survivors Speak Out - which David Crepaz-Keay was involved with for six years as both Secretary and Chair.

It is not in fact extinct but many people like David Crepaz-Keay left the organisation in the '90's and went on to be Survivor Workers".
The MHM press release http://www.mhmedia.com/press/ceo.html says:
"For six years he was involved in 'Survivors Speak Out', a group which promoted a range of Survivor voices and the concept of Self-Advocacy. His roles there included Chair and Secretary."

DODO. The sanity of the debate was briefly interrupted by Iver Diagnosis of SOS, an extinct user group, who suggested that more effort should go into alternatives to logos. Diagnosis said, "SOS would like a return to old-fashioned services that predate any form of logos, things like helping people deal with distress ". He was
immediately detained for this obviously psychotic outburst.


Fairer financial treatment for the mad

Currently there is a loophole that denies service providers the right to charge someone for a service they are compelled to receive. This is clearly discouraging the development of expensive services for people who don&apos;t want them. The government has signalled its determination to remove this anomaly. Further, in an attempt to stimulate innovation in this area, grants will be made available to help government supporters to develop new compulsory services, as well as a guaranteed income stream (patients under treatment orders).


Safeguards for sensitive cases

In order to ensure that complicated decisions are made in the most transparent and politically independent manner, restriction orders will be available for the Home Secretary to apply to "dodgy characters" at his discretion. These will be of unlimited duration and subject to scrutiny if the Home Secretary feels this is appropriate.

Another text only page:

CLASSIFIED. New image sought

Newspaper editors yesterday appealed for a new photograph of a psycho-killer to replace the ageing image of Christopher Clunis. A spokesman said, "don't bother, there's another ten years in this one."

ANOTHER IMPORTANT ITEM. The MHAC - the Mental Health Act Commission - is a Special Health Authority under the 1983 Mental Health Act which has a legal and crucial remit to protect the rights and care of people treated under detention. It has performed so badly that the plan in the new Draft Mental Health Bill was to scrap the MHAC (However, after scrutiny of the SECOND draft, the Parliamentary committee decided it should stay.)
This piece identifies the "poodle" behaviour of the MHAC which means that patients under detention have no protection at all.

Pet rescue. Toothless old watchdog (superseded by inflatable poodle) retiring.
Never seen much action. Bloated and overweight. Seeks good retirement home. Extremely obedient but does not respond well to challenging tasks. Preference will be given to comfortable red bench in the SW1 area. Can you give MHAC a home?

ANOTHER IMPORTANT CRITICISM OF a body (Liberty - National Association of Civil Liberties) that has failed to perform.

Have you seen?

A confused and bewildered old chap answering to the name of LIBERTY? This ramshackle old codger is having trouble with his sight too. He was last seen heading towards Guantanamo Bay to ensure the Human Rights of the camp X-RAY inmates. He is sorely missed by all loonies in the bins of the United Kingdom who can't understand how he overlooked their Human Rights.

This page sets out the mission statement of The Psychotic and gives the terms for contributors. David Crepaz-Keay is of course NOT a "mad person" - he hasn't been treated for any mental condition for around 20 years. So this is an instance of misrepresentation.

The Psychotic believes

Madness is an elevated state of mind. Many seek madness but only a minority achieve it. The Psychotic aims to bridge the gap between the incomprehensible world of the sane and the madness that we understand.
The Psychotic is produced by mad people (a clinical diagnosis is helpful but not essential), if you wish to contribute, please contact us using the links below. All contributions are accepted on the following basis:

all items copyright The Psychotic
all contributions will be anonymous
the anonymity of other contributors must be respected
all contributions must be funny
the editors sense of humour is final.

The graphics of THIS page have been saved by Des Curley and can be found in the Photos section of mentalmagazine

Lost & Found

These are references to Survivors Speak Out - which started in 1986 and last for about ten years as an active organisation. Also references to the fact that the Draft Mental Health Bill recommends getting rid of ASW's (Approved Social Workers)

Missing: the survivor movement, last seen in 1997 under a large pile of consultation documents.

Not found: meaningful service user comment, anywhere in the media.

Wanted: useful occupation for ASWs once duties under Mental Health Act are passed to Approved Mental Health Professionals (care assistants or work experience placements).


I am particularly interested in knowing who The Psychotic website was intended for. As I said earlier, I am not aware that it was advertised anywhere but on the UKsurvivors discussion board. I didn't actually contribute anything myself - that is, nothing I wrote to David Crepaz-Keay appeared on the site. The only contribution I MIGHT have made is in respect of what he is saying about the Survivor movement. Because in 2000 when I first went on the internet, I wrote to David - who I have known since 1993 - to say that I hadn't been able to find any user material on the net. He referred me to the UKsurvivors discussion board and at that time he was a member. I believe this free Yahoo! board which was set up by Mark Roberts in 2000, as part of his job with GLAD (Greater London Action on Disability) but who disappeared in 2001 without revealing the password to the board, so that no-one can administer it - is the only "Survivor" outlet on the net.

In February 2000, David Crepaz-Keay sent the following message to the UKsurvivors board, inciting the members to complain about an article that had appeared in The Nursing Times from a nurse who disapproved of the term "survivor" in respect of mental health patients. I have quoted some of the article.
The message board is open and the subsequent messages show that David Crepaz-Keay's message had the effect he apparently intended - to anger and upset people. In particular one woman - Anne O'Neill - who subsequently committed suicide who I wrote about on my website http://www.mentalmagazine.co.uk/index.htm#anne


DCK 29 February 2000 Nursing Times article
All Survivors should read and enjoy the following from Nursing Times this week:

Stephen Weeks, Primary Nurse from Leeds:
"my pet hate of the moment is directed at those who choose to blatantly misuse the word survivor."

"The suggestion that psychiatry is a minefield from which few people emerge intact should be challenged at every available opportunity. Those who choose to identify themselves by the undeniably catchy tag of 'mental health service user and survivor should be made aware (at gunpoint if necessary) that their thoughtless and egotistical actions only serve to devalue the word's true meaning."

"There seems to be a worrying high percentage of people who consider themselves expert in any field into which they have strayed. Mental health is no exception. But having experienced something does not automatically make a person an expert or enable them to speak with any authority on a subject. Nor does it give them the right to lay claim to grandiose titles."


The Psychotic website was not produced by "mental health users" but I suspect it was produced FOR them.

I do not identify myself as a mental health user and David Crepaz-Keay knows very well who I am and that I have consistently argued against what I see as the dangerous myth of the user movement - and he was on the UKsurvivors board when Mark Roberts banished me from that board in 2000 for expressing those views.

I do have a number of emails from 2002 which include David being explicit about Ron Coleman and the Hearing Voices Network. In an email on 13 September 2002 he mentioned:

"The long established rumours of dodgy finances around the hearing voices network ..... but the story is old and the evidence I have is not sufficient for publication."

I think the eight questions I have raised earlier in this email need to be answered.

Rosemary Moore
Surrey UK
"Campaigning for good health & social care...it's for everyone"


Hello All.

Well! Some of us have been calling for a public inquiry. The next best thing? Note the reference to Des, Rosemary - interesting. They have obviously taken no notice of your evidence.

Received this this morning (03.09.05.):

Dear Mr Cox

Re: www.ppeyes.org.uk Article "Suitable Jobs for Suitable People?"

We act on behalf of the Commission for Patient and Public Involvement in Health.

We have been informed that on or about the 6th June 2005, you wrote and published on the above website the article "Suitable Jobs for Suitable People?" (which we attach for your ease of reference).

This article is defamatory in nature and read in its entirety bears the following meanings:

1. That the employee of our client referred to in the article is a total |incompetent, with a substantial record of failure to both the organisation |and patients, working in collusion with an equally incompetent
organisation |who is clearly identified as being our client.
2. That both the employee and our client practice and tolerate disability discrimination and have embarked on a strategy of misleading the public.
3. That by employing this individual and supporting this individual, our |client is irresponsible and in breach of its duties to the public.
4. That the employee and our client are misleading, dismissive and |unconcerned about the welfare of patients.
5. That our client has failed to follow the Office of the Commissioner |for Public Appointments (OCPA) code of practice.
6. That there is a culture of nepotism and a strategy of unfair |employment policies where incompetent heads of department employ unsuitable and equally incompetent individuals who are patronising, unskilled, stupid |and insensitive.

Our client strenuously denies all of the above allegations in their |entirety.

Your website has also published on the "Ethereal Voices Forum", a letter |from a user who refers to himself as Des. This letter is also attached for your ease of reference.

In its entirety, and in the context published, this letter is also defamatory. It bears the defamatory meanings:
1. That Steve Lowden, the Chief Executive of our client, is corrupt and guilty of interfering with investigations in relation to complaints in order to cover himself personally and his department.
2. That our client, by employing and supporting Mr Lowden is |irresponsible and in serious breach of its public duties.

Again, our client strenuously denies these damaging allegations.

We have no hesitation in advising our client (to which we do not waive privilege) that these allegations are defamatory of it as they bring our |client into disrepute in the minds of right thinking individuals. Our
client suspects that these incorrect defamatory allegations have caused and are |causing substantial damage to our client. As such, our client is entitled to |commence a High Court action in respect of them.

However, in light of the overriding objective of the CPR and in accordance with the pre-action protocols for defamation, our client is prepared to delay the initiation of such proceedings provided that you comply, in
full, with the following conditions:
1. Remove the words complained of from your website immediately.
2. Provide a written undertaking that you will not make, publish, post or otherwise encourage defamatory statements to be made against our client and further, that you will remove all defamatory statements referring to our client, their staff or their practices from your sites and will notify our client of such postings and/or publications immediately.
3. Provide our client with an open letter apologising for the comments posted on the aforementioned forum and confirm that you will publish the same on your website.
4. Pay our client's reasonable costs in dealing with this matter.

If this is not done, our client will have little option but to consider formal proceedings against you including the seeking of an interlocutory injunction to remove this website and so prevent additional harm being caused. You should appreciate that such formal proceedings, if instituted, will result in you incurring substantial legal costs and expense. In addition, we will require your confirmation that all future postings will
be vetted and any defamatory references to our client removed.

In view of the above, we look forward to receiving your confirmation that you will comply with our requirements.

Yours faithfully

Hill Dickinson


(there were no enclosures and as a good beginning, they even got the URL wrong!)




M***** A**** chair of London Ambulance PF has been threatened by a CPPIH solictor in the past for criticising Sharon Grant on PPIFO. You may want to have a word with him.

In principle if you let the factual record speak for itself you should be allright.

N. (03.09.05.)


Dear Mike,

This is quite some threat! But exactly who are they representing? Did you name one or more FSOs? Should the matter proceed, you might invite people to provide backed-up anecdotes to support your contention.

Best wishes

J. (03.09.05.)


(from the chair of a national organisation) How terrible. Is there any foundation to these scurrilous allegations?

I didn't think that public bodies could sue for defamation. If CPPIH is a statutory body funded by government money how could it show that it would lose anything by the publication of libellous statements? Especially as the Government has already decided to abolish it. What more could it possibly lose? Individual members of staff might possibly succeed in a libel action, but even Mr Lowden would find it difficult to finance the litigation.

Does Mike have a lot of money or a valuable house to lose? (03.09.05.)


My questions for the Commission Of Patient & Public Involvement In Health are :

1. So it appears public money can be used to employ legal services to protect individuals from expressing
opinions about organisations who use public money ? I will certainly want to know much more about this so
I can contact relevant MP's with some concerns ....

2. Think about this CPPIH : do you really want a court case in which journalists will take quite an interest
in the whole context surrounding CPPIH and those who comprise it ?

Frankly I would like to see a great deal come out about CPPIH.

PT (03.09.05.)


Dear Mike, I am sorry to hear your latest news. I have been on the receiving end of a legal threat and remember how uncomfortable it felt (see below).

It seems that CPPIH is very sensitive to criticism and one must wonder if this is related to the poor view many have of their record.

I can't give advice as I am not legally qualified but you may wish to consider the following or ask a solicitor what she or he thinks of publicity.

I assume you are aware that CPPIH used legal threats when M A queried SG's record. What you may not know was that this was reported in Private Eye. With any journalist or medium there is always a risk that they get it wrong so if you send them anything do make it as straightforward as possible and provide copies of supporting documents.

My threatening legal letter was from the company that mismanages my local leisure centre. I got so fed up with lack of adequate response from them and the council that I set up a website to list their failings. it appears I have successfully seen off the legal threat but it was an unpleasant business.

P B (04.09.05.)


This does have certain echoes of the situation of 'The Camden Three', which we though at the time was unprecedented. As you may know that complaint was eventually thrown out by Steve Lowden; although the promised report on the activities of our former FSO and the London Office has yet to be shown to us nor other interested parties. Nor have any of the false statements made every been retracted.

I know of another case where there is also a certain amount of common ground, but I have not heard any news from that chap recently. And of course there is N G....

In all of the above we have individuals who are more than just ciphers, and who certainly have their differences, but all agree about putting patients' issues first

I assume your MP is involved? We are pressing for a PQ, A directly but H and I through our OSC too. We must have a public enquiry asap.

Best wishes

J (04.09.05.)


Hello Mike, yes i have been throug the Hill Dickinson trip as well. Similar threats against me. I suggest you ask for a Freedom of Information disclosure to find who consented to money been spent to initiate proceedings. Minutes, names, meetings etc. Happy to discuss on the phone. M. (04.09.05.)


(to Equal Opportunities Commission) Hello.

Thank you for your mail of 22.08.05.

I'd like to just take this a little bit further. I make no claims to have any special knowledge here but having worked professionally in the past for local authorities I am aware that, when a vacancy occurs, they cannot just shuffle an existing employee over into that job, even if that person is ideally qualified and suited. They have to advertise that post in suitable and appropriate places.

As I understand it this is because people of any gender or race have opportunities equal to everyone else to apply for the post.

If that is an accurate summation, can you please tell me why the QUANGO, CPPIH (set for abolition in August 2007) is subject to different rules and standards. Is there one set of standards for one and not the other? Surely people of any gender or race should have equal opportunities to apply for CPPIH posts too?

Using the same comparison, strict equal opportunities rules apply to time-limited local authority posts - they have to be advertised suitably to offer equal opportunities for all. So why should it make any difference that CPPIH is time-limited?

Shouldn't you be investigating this?


Mike Cox.
PP Eyes, an independent public watchdog for PPI. (04.09.05.)


Dear Mike

Just looking at your picture and been round the site hoping to see where I can leave my contribution/support for the legal thing. I see that blog is down at the moment so I'll do something later.

What I'm intending is a message on mm, ppif and your site discussing the solicitors letter. Mikki Elvin (who has reappeared on mm and uksurvivors) has posted a useful thing on uksurvivors that he may have sent you as well.

It's a lot of puff and such and does show up the way things are done.

The other thing is that I am going to submit a few things - incuding my latest email to Sharon Grant - to the Private Eye/Guardian competition. The entries have to be in by 12 September and must have been published by end of August. Why not simply submit your Suitable Jobs piece? It all ties in.

Anyway, I'll be posting soon.

Quite a feather in your cap I would say to be threatened by solicitors.... shows they care doesn't it?

All the best
Rosemary (05.09.05.)


Defamation is concerned with reputations, and in this and other ways it may be distinguished from malicious falsehood (Joyce v Sengupta)

Falsity is an essential ingredient of this tort. The plaintiff must establish the untruth of the statement of which he complains. Malice is another essential ingredient. A person who acts in good faith is not liable. Further, since the object of this cause of action is to provide a person with a remedy for a false statement
made maliciously which has caused him damage, at common law proof of financial loss is another essential ingredient.

If a plaintiff establishes that the defendant maliciously made a false statement which has cause him financial damage, or in respect of which he is relieved from proving damage by the Defamation Act 1952, the law gives him a remedy.

A defamatory statement is one which has a tendency to injure the reputation of person to whom it refers; which tend, that is to say, to lower him in the estimation of right-thinking members of society generally and in particular to cause him to be regarded with feelings of hatred, contempt, ridicule, fear, dislike, or disesteem.

In order to be actionable it must be proved that the statement was defamatory, that it referred to the plaintiff and that it was published by the defendant. The most widely accepted definition of defamation is in the words of Lord Atkin in Sim v Stretch, but a wide range of defintions was explored in Berkoff v Burchill. The
plaintiff must state what he understands by the words, including any innuendo alleged, and prove the existence of facts to support the innuendo.

It must be shown as a matter of law that words are capable of referring to the plaintiff and as a matter of fact that words lead reasonable people,who know the appellant, to the conclusion that they do refer to the plaintiff.

In this particular case, I think that there is "fair comment" on a matter which is of public interest or which may be submitted to public criticism and is not actionable on the part of the client nominated

I advise you inform that you are acting in the public interest and are seeking a public inquiry into the appalling debacle of patient and public involvement and collect appropriate evidence to prove that reasonable people would support and approve your actions. I see a lot of evidence on this message board and others.

M E (05.09.05.)


As you know, I'm rather out of all of this but it reads as though it is all building towards an article in the Society section of the Wednesday Guardian/similar sections in other broadsheets. There are potentially several angles including:
Threats against volunteers
David and Goliath comparable resources to pursue legal action
How public bodies smother criticism
Await next developments.
H (05.09.05.)



Dear Sharon (Grant)

I am deeply disturbed by what I am hearing and reading about CPPIH . Apparently there are threats to take a MH User to court over some alleged defamation. Why is public money being considered by CPPIH to be used to support a defamation action with reference to alleged defamation ? This is an apalling situation and I will support a move to create appropriate MP. and press interest in this .

I am also deeply disturbed by your offices lack of response to a lady named Rosemary Moore with reference to her now published concerns over the Commissioner David Crepaz Keay and his behaviour with reference to a website termed : "The psychotic"

I fail to see why this gentleman is still a Commissioner. I assume he has been giving advice ref : Mental Health Matters - media angles etc. And , as you know he was a Charity head at Mental Health Media which he recently left . I cannot understand why a Charity Head sets up a website without telling people who he is and encourages others in important mental health circles to yield their opinions about others in the same circles.

This gentleman represented his Charity and by virtue of his standing in that CPPIH, and he is associated strongly with "Anti stigma and Discrimination" thinking in mental health issues . I find his behaviour falling short of the Nolan Standards and very countreproductive and it has damaged CPPIH .

I believe he should resign and I am concerned that the Commission appears not to have investigated these maters properly

I also cannot understand why Mental Health Users have been put through procedures of complaint and or review without special supports there are examples of this which you will know of and I know there has been damage caused bu CPPIH's unwillingness to create special support measures ...

P B T (05.09.05.)


This is really good stuff.

Most people are not conversant with legalities and what you have put down is helpful. Certainly could well be to me in the future. So thanks very much.

I know that Mike does good works and wants to protect the rights of vulnerable people, or decent human being who is wronged.

I actually find the response from whatever suit it was threatening and typical of the hierachy in the system. Threats and demands for money. I think the money aspect shows lack of substance or moral fibre.

If I was defending my honour (in a literal manner), I would not deem it necessary to demand money...Unless of course I was out of pocket (loss of earnings..if that applied) As yet, I have seen no proof of anything from the supposed defendant/s (couldn't think of a more appropriate term) and I agree that if something is in the public interest..then the public should know.

Mandy (05.09.05.)


Hello Mr Lowden.

Freedom of Information Act 2000.

Can you please let me have the following information under the terms of the above Act:

Who, or which committee or group, authorised expenditure of public moneys on the engagement of Hill Dickinson solicitors to write to an individual member of the public, nomely myself, in threatening terms.

If a committee or group, the names of the persons comprising that committee or group.

Copies of all correspondence, including e mails and minutes of meetings relating to that decision.

Please acknowledge receipt of this request.

Mike Cox. (06.09.05.)


Thanks. Excellent letter to Lowden. This is the way to do it. Tease it out.

I did by the way get a response from SLowden yesterday with a very full response - simply direct replies to the eight questions I posed in my letter of 5 June, given by David Crepaz-Keay. No other comments from SLowden, he ust topped and tailed it. I also know - via Des himself - that Des got a response on (or dated) 2 September) and this referred to my email. I'm waiting for Des to send me the hard copy of this.

(In case you've been paying any attention to the stuff from Paul), it is all bound up with my criticisms (to him and Des privately) of not working with the "winning team" (the rest of us). His idea of supporting me as he put it in his email, is writing an email to Sharon Grant complaining that I hadn't received a reply, as well as complaining about you being harassed by solicitors and so on. But he won't do that publicly. I've only seen it because he sent it to Des and Des sent it to me without telling Paul he was going to.)

I'll be posting the Lowden response and my comments (after I get the stuff from Des) as soon as I can. I wrote the complaint on 5 June, I chased it on 31 August and got an email response on 5 September - so that is three months later. Des got a response - it seems by letter - a few days before that. And you got a solicitor's letter dated when?

Well done.
All the best
r (06.09.05.)


Hi Mike,

I have attempted to contact you but I only use webmail which means I cant mail you via your site as your contact link attempts to launch a mail prog like Outlook ( which I wont use for security reasons ) and of course Yahoo groups masks e-mail addresses. Anyway as you guessed I am rather interested in this latest bizzare move from the CPPIH and am happy to help out anyway I can.

Hill dickinson must have been instructed to act against you on the advice of Steve Lowden even if Sharon Grant turns out to be the person who 'technically' authorised taking legal action against you .

I would be interested in obtaining Hill Dickinson's address - the one printed on the threat to you - as I believe their comments about the communication of mine they also want you to remove and apologise for are unjustified because what I wrote was factual, accurate and true and I can prove this. I want to ask them to provide evidence that my communication actually defames their client or retract their claim as it is now in the public domain

To be honest I dont understand why Hill Dickinson decided to focus on my communication as well because it comes across as very amateurish fudges the issue and weakens their case. You know, its always open to you to write to Hill Dickinson informing them that you have received another communication from Des and he is concerned about the threats against you and his reputation and has agreed to further substantiate the claims made in his communication on your site and you think it only fair that he has a right to reply. I think Hill Dickinson will drop the case in an instant if they suspect there's anything dodgy involved or there is any bad publicity in it for them. That's the other reason why I'd like the firms address, I'd like to find out who their corporate clients are in their non-health care practices and drop a random few a line about the firm taking discriminatory action against people with disabilities.

Des (06.09.05.)


Hello Des.

50 Fountain Street, Manchester, M2 2AS. Their ref: PDW/CRH/KLM/ e mail:
Charlotte Harris@hilldickinson.com (yes there is a space and capitals).

I refuse to grace it with a reply but you go ahead and do whatever you like. I want to see if CPPIH get themselves in deeper - I'm giving them more rope.


Mike. (07.09.05.)


To the Politics Editor

Dear Sir

The attempt by the Commission For Patient & Public Involvement In Health to shut down (see Url PPeyes above) efffective whistleblowing on them re: threatening Mr Mike Cox an elderly Service User and ex social worker with a defamation suit is appalling and attack on democracy surrounding mental health matters , which there is precious little of .

By way of digression may I add there is a very important section in this email below refering to an investigation into a Commissioner.

The CEO of CPPIH Steven Lowden is apparently claiming "right thinking people" will believe Mr Cox's studied and evidenced arguments and conclusions on his website undermine Mr Lowden's reputation .

Most of the arguments are so complex that most "right thinking people" probably would not understand them because so little attention is paid to mental health matters anyway...

That CPPIH are ineffective , Mr Cox is right. He has shown the evidence correctly as far as I can see and drawn some conclusions that are in keeping with that . In mental health terms CPPIH gave puny support to Patient-Users which the law stated should make up the majority of the statutory Patient Forums. A carer's allowance purely for meetings was all that was given but no back up support for the role which brought Users into the firing line of Trust and mental health politic-ing.

I myself resigned after over an year of voluntary duty because as a patient I was treated with notable prejudice by my local Trust that I was monitoring and the build up of stress surrounding that and other related events poorly handled by the Commssion caused me to resign. There were no adequate support mechanisms when the conflict built between Trust and the Forum. And monitoring a Trust can certainly lead to an atmosphere of conflict because the Trust had conservative elements within it that slowed progress up and would not initially carry out well recorded auditable consultations on Patient's needs that could be studied by our PPI. The Birmingham & Solihull Mental Health PPI finally won that position after a year , and then I left ...

Mr Cox adequately claims on his website that Mental Health Users and others could become subject to malicious complaints without any support. They could be both volunteers and yet have no rights under the disability discrimination act because they were not "employed" . Thus claims for greater support to fit their inherent and special needs could be ignored with absolute impunity...

The fact that the drop out rate amongst PPI volunteers is so high and Mental Health Forums do not have special support mechanism only shows that the CPPIH are a vehicle of inadequacy shaped by a Govt that plays with tokenistic ideas about patient democracy . The CPPIH in fact should have been critical of Goverment itself and should have been whistleblowing with some vigour . Instead careers have been preserved with apparent aquiescence and disempowerment for those volunteers below who needed better support...

My understanding is that Mr Cox also published some material from a man named "Des" . This material is also available on the web (see Yahoo Mail link above for "wonderfullynutty" who is "Des") It points to one Mental Health CPPIH Commissioner Mr David Crepaz Keay who apparently whilst serving as the charity head of Mental Health Media created a website named the "Psychotic". Mr Keay apparently did this anonymously and allegedly encouraged people in other mental health charity circles with humour and chat to expose their disparaging thoughts and feelings about others rival charity heads ..At least two people have seen this website and some of its content and complained to the CPPIH that Mr Keay fell far short of the Nolan Standards. One of these people is Rosemary Moore and she has a well known website in mental health terms named "MentalMagazine".

Both Ms Moore and "Des" have made complaints to CPPIH which appear to have been dealt with less than adequately and during the investigation it appears Mr Keay resigned from being the CEO of Mental Health Media . Ms Moore is still pressing for her points to be adequately addressed by Sharon Grant the Chair of CPPIH - apparently to no avail.

The context we have surrounding the CPPIH and their inadequacies does not inspire those of us who entered genuinely into the need to help our communities it smacks instead of inadequacy and now attacks on a man who has been recording much of this

I do hope your paper will help balance our democracy out again ..

Paul Brian Tovey

Ex-Deputy Chair of Birmingham & Solihull Mental Health Trust Statutory Patients Forum .. (07.09.05.)



Watch they dont use that extra rope to contact your web hosting company as many companies will quietly drop web accounts if they receive serious complaints as the level of proof is set pretty low - often its just receiving a serious complaint - and this will be explained away somewhere in the contract.

I will contact Hill Dickinson directly about their comments on my communication.

I am also trying to back up Paul's posts to various worthies.

Des (078.09.05.)


Dear Mike Cox

I have given the attached url link below to your website to a Birmingham Evening Mail reporter following reading the apalling attempt to gag you and threaten you with a defamation suite under the instruction of the Commission For Patient & Public Involvement In Health whose National Headquarters are in Edmund St Bham. I do hope the paper takes this serious attack on you as something to investigate properly. I will press in every way to stop this Govt bullying on you ...

As an ex Deputy Chair of the Birmingham & Solihull Mental Health Trust PPI I also was very critical of this organisation and the lack of support mechanisms inputed to create an effective set Public and Patient Forums representative of Mental Health Service Users ..

Paul Brian Tovey ....(07.09.05.)



Unfortunately we're unable to continue hosting your site ppeyes.co.uk for legal reasons following defamatory allegations made on your site. This follows a letter sent from the law firm Hill Dickinson.

Best regards,

Dave Forward.
Vision Internet Limited - http://www.visn.co.uk


Big Brother treads the Brave New World!

Ah well, look for another host. Any suggestions?


Mike. (08.09.05.)


Well ....what's happened is something Des said would happen - namely that the solicitors would go after the ISP. I think he might have some advice about this though ....

I think CPPIH are drawing a lot of negative attention now and destroying their own standing in the eyes of Users even more - I cannot see a lot of Users sitting down over this affair because its symptomatic of a body that has created a lot of problems and needs to go..... the quicker the better.....

I note your website gets closed down Mike , and a questionable website complained about to the CPPIH Commission owned by a Commissioner that was created whilst he was a Charity head results in the continuance of that site. There are still questions that need to anwered by Sharon Grant about this affair

Well ...CPPIH ...you can expect me to make my protests to politicians and press .....
PT. (08.09.05.)


Hi Mike, Sorry to learn of this. I had better luck with BT Yahoo, though it helped that the solicitor representing Leisure Connection claimed to have written to them and BT had no record of this.

Like Hilary, I deplore the way the ISP assumes the legal letter means you have defamed.

You may be interested in John Nauhton's piece on this topic.

PB (08.09.05.)

ISPs the weakest link when it comes to free speech

The Networker

John Naughton
Sunday October 17, 2004
The Observer
FIVE years ago, I had a conversation with a friend of mine - a very eminent scholar who specialises in international relations. He looks like someone out of central casting - grey hair, an absent-minded bearing, with a penchant for elegant but crumpled corduroy suits. He has an acute sense of history, and often seems to view everything from an altitude of 30,000 feet. We were talking about the internet, and the challenge it represented to the established order. I had outlined what I saw as the amazing potential of the network to transform access to information, make it impossible for governments and media establishments to hush up scandals, undermine established corporations, create new kinds of businesses which had hitherto been inconceivable, etc, etc - in short, to change the world.

My friend courteously heard me out. Then he said: 'Well, we'll see. Perhaps this technology is indeed a revolutionary threat to the established order. But I wouldn't bet on it.' Five years on, I'm not so sure I would bet on it either. Consider this report from Thursday's Guardian. 'Last week, Rackspace, a [web] hosting
company with headquarters in Texas, handed two of its London-based servers to the FBI after a subpoena for their contents was issued by a US district court. The servers contained material belonging to the Independent Media Centre - better known as Indymedia (www.indymedia.org) - a conglomeration of global radical anti-globalisation sites produced by ordinary citizens.' Now one of the interesting things about Indymedia is that much of its content is produced by amateurs - what it calls 'citizen journalists'. Its
Internet Service Provider, Rackspace, said it was merely complying with a court order 'which establishes procedures for countries to assist each other in investigations such as international terrorism, kidnapping and money laundering'. Indymedia has been unable to find out why its material has been seized and its sites disabled. Is it because, somewhere in its web pages, there are genuinely sinister things? Or just material that someone - the Attorney-General of the United States, for example - doesn't like? In the Kafkaesque world bequeathed to us by Osama bin Laden and his opponents, we simply don't know.

The moral of the Indymedia story is that, when push comes to shove with the established order, the internet usually blinks first. While in principle the net provides the most unfettered and uncensored communications medium in history, in practice it has a critical weak link - the fact that in order to access the net, everyone has to go through an ISP. And ISPs are, for the most part, commercial companies - organisations owned by shareholders and run by accountants and lawyers who tend to see the upholding of liberty and free speech as loss-making activities best avoided. What this means is that the moment a threatening letter arrives, they tend to take down the site 'just to be on the safe side'. And usually they do this without examining whether the complaint has even superficial validity. You think I jest? Well, consider the findings of an experiment conducted recently by an activist group called 'Bits of Freedom'. They signed up with 10 Dutch ISPs and then put online a work by a famous Dutch author, Multatuli, who died more than 100 years ago. The online
versions stated that the work was in the public domain. The group then set up a fake society which claimed to be the copyright holder of the work and sent out complaints to all 10 ISPs using a Hotmail address, demanding that they take down this 'copyrighted' material. Seven out of ten removed the site - one within just three hours. One ISP forwarded all the personal details of the site owner to the sender of the fake takedown notice without even being asked to do so. Only one ISP pointed out that the copyright on the work had expired many years ago. Or, to put it another way, only one of the 10 ISPs bothered to look at the supposedly offending material.

The moral is clear. If you want to censor someone, just get your lawyer to write a snotty letter to the ISP that hosts his or her site. More generally, those of us who worry about freedom will have to address the issue of ISPs.

There may be a case, for example, for NGOs across the world to band together to set up an ISP which would be prepared to investigate and vigorously contest complaints and injunctions from the established order. The days when we could assume that we could 'publish and be damned' on the net are over.
john.naughton@observer.co.uk www.briefhistory.com/ footnotes/

John Naughton: The Networker
Observer Comment
Observer Business


Dear Mr Bacon. (12.09.05)

My apologies for the length of this letter, I have more than one request for you:

1. Following on from my letter of 6th September, my website www.ppeyes.co.uk is now closed. This resulted from CPPIH instructing a firm of solicitors Hill Perkins to write to my website host claiming defamation; a claim which is nonsense since all the material on my site is founded in verifiable fact. More good use of public funding by this virtually unaccountable QUANGO to gag free expression!

I mentioned in my last letter that some London based PPI Forum members are calling for a public inquiry into CPPIH. I’m now told they have two MPs interested in supporting this call. Could you too please consider supporting a call for some kind of serious inquiry with opportunities for stakeholders to present evidence? I have a feeling that a formal public inquiry would not be appropriate or viable but perhaps an investigation by the Select Committee on Health?

Your letter enclosing Rosie Winterton’s reply to my letter to Paticia Hewitt arrived just as I was about to post this. Thank you for forwarding that reply. It is good to have it confirmed they are shelving the previously proposed changes and that I may have the opportunity for involvement in the local consultations. I will be contacting the Strategic Health Authority about this but I can’t say I’m encouraged. I have just responded to their draft Health Strategy 2005 - 2010 which had, contrary to Sect. 11 of the Health and Social Care Act 2001, no mention of patient and public involvement.

Rosie Winterton’s letter also says: “This consultation.....and help us ensure that future patient, user, carer involvement as well as public engagement is as fit for purpose as possible” (my italics). I cannot see how CPPIH’s continued oversight, with no ‘patient, user, carer involvement’ and staffed by people who have a long record of incompetence and equivocality can ever be ‘fit for purpose’ . And so to my next request:

2. The publication of “Suitable Jobs for Suitable People” appears to have struck a nerve. That CPPIH staffing and employment practices are not quite what they should be is also supported by their response to my FoI request of 11th June (copy and their response enclosed). it is yet another breach of Nolan standards and I am in touch with the Equal Opportunities Commission about the possible anomalies here.

Following this up, I have now made a new FoI request and a copy of this is also enclosed. I would be grateful if you could make the Department of Health aware of it and ask them, as the parent body, if they have any comments.

3. I am a participant in the campaign against the Mental Health Bill and have recently been speaking locally on the issues, supporting the Norfolk Mental Health PPI Forum and working in partnership with representatives from the Mental Health Alliance and MIND. I would like to ask you, as my constituency MP, if I can rely on your support against this Bill.

After chasing them I did finally get an answer from Conservative Central Office about the alternative mental health bill, “Compassion not Coercion.” I was told it is authentic and was negotiating permission to post it on the mental health section of my website when I was closed down. It is something of a mystery though why they avoided a reply for so long, why they are so coy about it and why its not on the Conservative website. Talking to Martin Ball from ‘Together’ and the Mental Health Alliance last week, there was mutual agreement that it is a very positive model.

You did say some time ago that you would look for an opportunity to raise questions about CPPIH in the House. I wonder if you have been able to do this, and if so, where I can find it in Hansard.


Dear Mr Cox

Freedom of Information Act

Thank you for your letter dated 6 September 2005.

1. As Chief Executive, I authorised legal advice on this matter as I have a duty of care to my staff and felt that your website contained libellous statements. This was confirmed by our solicitors and we asked you to respond appropriately.

2. See answer to I above.

3. You are not entitled to such documents under the Freedom of Information Act as they are subject to legal professional privilege.
Yours sincerely

Dr Steven Lowden Chief Executive (15.09.05.)


Dear Mike,

We have downloaded about 50 pages cached by Google on 6 September or 25 August by searching for "ppeyes.co.uk". We are not sure how long the service will continue to be available.

If any alleged defamation is against CPPIH rather than an individual we think it is unlikely to be challengable in the courts. We attach a summary of the judgement of the House of Lords in DERBYSHIRE COUNTY COUNCIL v TIMES NEWSPAPERS LTD (1993) which found that a local authority could not sue for libel and stated that the same principle would apply to central government bodies. This decision has not prevented other government bodies including Flintshire County Council from threatening libel action against Freedom to Care.

We are not lawyers.

Sheila and Geoffrey Porter-Williams
Freedom to Care 18.09.05.)

[House of Lords]
1992 Dec. 7, 8, 9, 10; Lord Keith of Kinkel. Lord Griffiths,
1993 Feb. 18 Lord Goff of Chieveley, Lord Browne-Wilkinson and Lord Woolf

The plaintiff, a local authority, brought an action for damages for libel against the defendants in respect of two newspaper articles which had questioned the propriety of investments made for its superannuation fund. On a preliminary issue as to whether the plaintiff had a cause of action against the defendants, the judge held that a local authority could sue for libel in respect of its governmental and administrative functions, and dismissed the defendants’ application to strike out the statement of claim. On appeal be the defendants, the Court of Appeal held that the plaintiff could not bring the action for libel.
On appeal by the plaintiff: -

, dismissing the appeal, that since it was of the highest public importance that a democratically elected governmental body should be open to uninhibited public criticism, and since the threat of civil action for defamation would place an undesirable fetter on the freedom to express such criticism, it would be contrary to the public interest for institutions of central or local government to have any right at common law to maintain an action for damages for defamation; and that, accordingly, the plaintiff was not entitled to bring an action for libel against the defendants, and its statement of claim would be struck out.


Complaints and Standards of Conduct Officer,

Dear Sir/Madam.

Formal Complaint.

In a letter to Steve Lowden dated 06.09.05. (copy enclosed) I made a request under the Freedom of Information Act 2000. Mr Lowden’s reply dated 15.09.05. (copy enclosed) refused information under point 3 of my letter, saying it was subject to “legal professional privilege.”

Guidance on the legal professional privilege exemption from the Office of the Information Commissioner says: “......the exemption from the right to know is conditional and can only be relied upon where the public interest in maintaining the exemption outweighs the public interest in disclosing the information.”

In this instance, I propose that as:

  • Mr Lowden authorised the expenditure of public funds on legal action against an ordinary elderly NHS user and individual member of the public (myself) resulting in the closure of my website, www.ppeyes.co.uk;

  • he did so in the face of availability of knowledge (contained on my website) that the facts of the issues involved precluded any claim of defamation;

  • there is legal precedent against a government body taking action for defamation:

“[House of Lords] DERBYSHIRE COUNTY COUNCIL APPELLANT AND TIMES NEWSPAPERS LTD. AND OTHERS RESPONDENTS 1992 Dec. 7, 8, 9, 10; Lord Keith of Kinkel. Lord Griffiths, 1993 Feb. 18 Lord Goff of Chieveley, Lord Browne-Wilkinson and Lord Woolf The plaintiff, a local authority, brought an action for damages for libel against the defendants in respect of two newspaper articles which had questioned the propriety of investments made for its superannuation fund. On a preliminary issue as to whether the

plaintiff had a cause of action against the defendants, the judge held that a local authority
could sue for libel in respect of its governmental and administrative functions, and dismissed the defendants’ application to strike out the statement of claim. On appeal be the defendants, the Court of Appeal held that the plaintiff could not bring the action for libel.

On appeal by the plaintiff: - Held, dismissing the appeal, that since it was of the highest public importance that a democratically elected governmental body should be open to uninhibited public criticism, and since the threat of civil action for defamation would place an undesirable fetter on the freedom to express such criticism, it would be contrary to the public interest for institutions of central or local government to have any right at common law to maintain an action for damages for defamation; and that, accordingly, the plaintiff was not entitled to bring an action for libel against the defendants, and its statement of claim would be struck out.” (my emboldening)

  • and, in the light of the above Mr Lowden can only have authorised that public expenditure in an attempt at intimidation.

The balance of the public interest is for disclosure of the information requested.

Please take immediate action to provide the information requested. (Mike Cox 28.09.05.)


Good morning, Mike,

I do not know the nature of your difficulties:not my business at all, let's keep it that way.

However, for clarification, I chair the PPI F for xxxx and last October was subject of a complaint which CPPIH 'investigated'. I put the word in inverted commas because the so-called investigation was cursory in the extreme and wholly unsatisfactory. After 16 weeks of frustration with all this, during which I gathered the necessary to clear myself, the complaint went to CPPIH Standards Board and was dismissed. I was re-instated.

I took legal advice during this time, and asked CPPIH to refund the cost of these legal fees, along with the other expenses of postage, copying, travel etc that inevitably I incurred. Finally, they did.

Further, as the conduct of CPPIH staff who dealt with the complaint was so unprofessional and inadequate, I formally lodged a Complaint with the Commission in March of this year. To date, I have heard nothing.

I got Steve Lowden to come to xxxx early this month to listen to the whole sorry saga. Much previous correspondence with him had yielded little. He did agree that my experience was unsatisfactory, that the policy for complaints against forum members needed review and that this was being done and would be complete by Dec this year. He also said that he would send a letter of apology to me and to my forum colleagues, and that I could expect the result of my complaint against officers of CPPIH very soon. The meeting took place with several members of my own forum present and members of the others forums across tha local patch. The proceeding were tape recorded, with Steve's full knowledge, and the transcript has been typed up. A copy will go to him and to all those in attendance.

So far, four weeks on from his visit, nothing has happened.

I have to say that I am not very hopeful that much will! It is an uphill struggle.

Salaams, (e mail received 30.09.05.)


Dear Mike

I now have some very hard evidence (letter) that things were cocked up ref procedures surrounding the Bham PPI . It points absolutely at CPPIH and leaves them open for accusation of maladministration and a real fiasco I think .

The fact is I was deeply affected by their useless admin of matters throughout a year and now I am a member of the public I wonder if I too can go after them ref the Ombudsman. What grounds might I have ? Any thoughts ?

I have a CPPIH letter right from the top though which admits a cock up and that cock up affected all those involved beneath it.

My position is to go after CPPIH on the grounds that their procedures were inadequate , prolonged out processes of complaint into a "review" which was never called an "Investigation" and most defintely - (it has been admitted in writing ) did involve failures on several parties linked to the Bham PPI ..

Supports were never offered to anyone who went through the stresses that emerged . And that would have been normal in any other situation where someone was doing Govt work and suffered stresses as a result over a long period of time . I even suggested a special support MH Mentoring/counselling "work-stress" group for the West Mids Region to no avail

Its what to do next now ...any thoughts ?

Regards (e mail received 03.10.05.)


My reply to the above:

Hello xxxxx.

I think you would have a clear referral to the Parliamentary Ombudsman. Unfortunately, it is the only established route by which CPPIH can be held at all accountable. The snag is, I've just had another letter from the PO apologising that my complaint, referred to them in April, has still not been allocated to an investigator - they're snowed under.

I honestly think the best bet is to continue to press for a select committee inquiry at which all of us willing and interested could speak to our evidence. There's some reluctance though from others in other parts of the country to go beyond their individual actions and this fragmentation is disappointing.

Anyway, if you do decide on the PO route - and it would certainly be useful action even though it takes longer than we'd want - the complaint (clearly stated in terms of `Complaints about the way CPPIH has acted, or failed to act in the exercise of its statutory duties` or `Complaints about the way any member of CPPIH, its staff, PPIF Members or FSOs have acted in the exercise of their duties.`) has to have gone through the CPPIH process and their responses found unsatisfactory. The PO complaints form can be downloaded from their website and the complaint has to be referred via your constituency MP.

Good paddling. (03.10.05.)


Freedom of Information Act Officer,
CPPIH National Centre,

Dear Sir/Madam.

Freedom of Information Act 2000

Under the terms of the above Act, could you please let me have the following information:

  1. the number of people nationally who have resigned from PPI Forum membership since 01.12.2003;

  2. the number of PPI Forum members who have been subject to any kinds of disciplinary procedures by CPPIH since 01.12.2003;

  3. the number of PPI Forum members, since 01.12.2003, who have been dismissed as a result of disciplinary procedures by CPPIH;

  4. the number of PPI Forum members, since 01.12.2003, who have resigned as a result of disciplinary procedures by CPPIH;

  5. since 01.12.2003, the number of PPI Forum members known to CPPIH who have alleged disability discrimination by CPPIH;

  6. since 01.12.2003. the number of complaints of disability discrimination against CPPIH which have been upheld;

  7. since 01.12.2003. the total number of complaints of all kinds made against CPPIH;

  8. the number of PPI Forums currently with less than seven members;

  9. the total number of people CPPIH or its Commissioners have threatened with legal action since 01.12.2003.;

  10. the total number of staff suspended by CPPIH since 01.12.2003.;

  11. the total number of staff dismissed by CPPIH since 01.12.2003.

  12. the total number of staff who have left CPPIH since 01.12.2003. for whatever reason;

  13. the trade union(s) representing CPPIH staff;

  14. the total number of problems reported by PPI Forums which remain currently unresolved.

I look forward to hearing from you by 1st November, 2005.

Please acknowledge receipt of this letter. (Mike Cox 04.10.05.)


Hello Mike

I was interested by your posting, and surprised it has received so little response.

I do some work in this field and have many well-evidenced and critical observations to make about the management, governance and administration of PPI structures and processes, from high strategy (NHS Plan, Kennedy report, CHC abolition) to the fine detail of PPI Forum/Trust interactions. I see much to praise, but also some things that are disgracefully bad. I can certainly see that a well-informed Select Committee inquiry into some of these matters might (slightly) improve the future prospects for a decent NHS.

But I don't know who you are, or what your agenda might be (internet research offers me some clues) and I would only want to share my views in circumstances where I can understand and control my risks.

Happy to discuss further, if that works for you.

Kind regards (e mail received 08.10.05.)


(My reply to the above) Hello Neil.

I'm a retired mental health professional and now a NHS user (including MH). From a thirty year long interest and involvement in service user and carer issues, in the late 1990s I took a keen interest in the development of the concept of PPI. I was an initial member of the first PPI Forums but by February 1994, had resigned, the last straw being an act of disability discrimination by CPPIH.

Since that time, as a proponent of the concept of PPI, I have followed the progress?? of CPPIH and PPI as an independent monitor and commentator in close touch with events and developments. I have written quite a bit (I can let you have PDF examples if you wish) about various issues involved, for one, succeeding in influencing DoH and CPPIH to review their policy of not putting their volunteers through CRB screening. Other issues have included:

DoH and CPPIH dismissal of the extensive knowledge and experience of long standing service user and carer organisations;
CPPIH unaccountability (as with all QUANGOs);
CPPIH Standards of Conduct policy and the absence of protections for volunteers;
the absence of whistleblowing protections for volunteers;
CPPIH incompetence;
CPPIH equivocality;
CPPIH's disregard of other Nolan standards;
CPPIH's ignorance and insensitivity in dealing with vulnerable volunteers (especially those with mental health problems);
and latterly, CPPIH's employment practices which appear to breach equal opportunities principles.

I have developed contacts with other concerned PPI members and resigned members from across the country (Camden and Islington in London were the first to call for a public inquiry - see www.ppif.org.uk). In July, I set up my own website www.ppeyes.co.uk but by the beginning of September CPPIH had engaged lawyers to write to my website host claiming defamation (despite acres of solid fact on the site) and my host closed the site down. I'm currently waiting for some more FoI details from CPPIH and compiling a chronological dossier of the evidence which is now 95 pages of small type and nearing completion, and the website will be relaunched when this is done.

My constituency MP Richard Bacon (con) has been in the loop since early 1994 and has provided excellent support including the provision of an effective conduit to Rosie Winterton, DoH, David Hinchliffe (when chair of the health select committee), Patrick Hall, Chair of the All Party Group on PPI in Health, the Office of the Committee on Standards in Public Life and the Office of the Parliamentary Ombudsman. He has now agreed to explore the possibility of a select committee inquiry, hence my appeal for other contributions and experiences.

I hope this gives some idea of where I'm coming from - please don't hesitate to ask for more and please feel free to use this information however you wish.

Heddwch. Mike. (09.10.05.)


Hello Mr Bacon.

From Paul Tovey (Birmingham).


Mike Cox.


I will give evidence to any select committee that CPPIH have tangibly messed up matters in Birmingham. I now have material sourced to David Orchard CPPIH which demonstrates a real cock up and this can only have resulted in distress to all concerned . This for me is now a SYSTEMIC matter of maladministration and its been admitted .. (09.10.05)


Hi, I have had a reply from Laura Bruni following my request for information about the All-Party Parliamentary Group on Patient and Public Involvement in Health. See below my sign off and the attachment or read my summary.

The group meets infrequently and last time, in July, there were only 3 MPs, 1 peer, and one person representing an MP, plus Sharon Grant, Steve Lowden, David Orchard, and Laura. There were apologies from 19 MPs. In the minutes a presentation by Sharon is noted. She claims among other things that “the system is working”.

The All-Party Parliamentary Group are next scheduled to meet on November 2nd.

I have had no reply to my email of 22.9.05 from my MP, Barry Gardiner, or from Kevin Barron, Chair of the Health Select Committee.

Any suggestions as to whether to respond or how to take this forward.

You are welcome to copy this to others but please replace my email address with my name if you do. I am happy to work with old comrades but no longer wish to be included in general emails about CPPIH or begin new email correspondence.

Paul Burns (e mail received 10.10.05.)


Fax to Bob Blizzard, M.P. for Waveney.

It was the source of hoth surprise and concern that I didn't hear from you after I left the Register of the Parliamentary All Party Group on C.P.P.I.H. and the above for your attention, after lodging my latest Complaint to the Ombudsman with your Lowestoft Office This deposit was made shortly afterthe eviction and arrest of an 82 year old pensioner from the recently held Labour Party Conference. It seems utterly incongruous that the Government, under whose banner you march, should also simultaneously empower, with menace, another of its officials to threaten serious and expensive legal action against another pensioner, who simply was attempting to "blow a whistle" upon the nefarious practices of a QUANGO.

It is abundantly clear, from the Health Minister's totally unsatisfactory response to my wife's letter to C.P.P.I.H.'s Chief Executive, that Rosie Winterton gives unconditional support to the actions of her Commission, which must include its recent recourse to legal services, who advocate eventual rccourse to the High Court to proceed against Mike Cox for defamation. He has informed his Constituency M.P. of this threat and the forced removal of the C.P.P.Eyes websight from the Net. Richard Bacon, has attempted to gather a combined M.P. endeavour, to deal with C.P.P.I.H's damaging and improper exercise of government power. Surely, however, the time has come for these excesses and infringements to be exposed to Parliament, either by the tabling of a question either to the Prime Minister or at least during Health Questions to the Secretary of State?

Recent information reveals that the All Party Parliamentary Group met last in June with an attendance of three members. There was, however, mass representation from senior members of C.P.P.I.H, who presented a false scenario that all was well. Surely it is time for this Group, to be compelled to take up the role for which they were instituted, not just, apparently, to "hobnob" witn tneir charges.

You mentioned to my wife that you are in the habit of making home visits, in pursuit of constituency business, perhaps, therefore, it would be advisable for me to contact your office and make an appointment for such a visit. One would merely need a phone call rather than long flitue appointments at Lowestoft. Attached also is the latest from Steve Lowden, which is a masterpiece of evasion, misrepresentation and falsehood.. With his current recourse to Solicitors any response from myself must be both cautious and legally considered.

John Fearn 14.10.05.


13th October, 2005.

John Donnelly,
Inquiry Officer,
c/o the Office of the Parliamentary
and Health Service Ombudsman,
Millbank Tower,

Dear Mr Donnelly.

“The Government is committed to delivering first class public services that meet the needs of the citizen. Where levels of service fall below standard, people have a right to expect a robust and user- friendly system for the investigation and resolution of complaints.” (Reform of Public Sector Ombudsman Services in England, Cabinet Office 2005) (my italics)

Thank you for your telephone call yesterday evening and for listening closely to what I and Mr Fearn had to say. I would like to further clarify some of the points I tried to make.

Firstly, you have some of my background in the additional paper adjunctive to the referral form. I’d like to expand on that as it underlines why I consider these matters so important:

Up to early ill-health retirement in 1999, for thirty years I was a generic/mental health social work practitioner, Mental Welfare Officer and Approved Social Worker. In that capacity and over that time I developed a keen interest in, and became a proponent of (in partnership with my professional body, the British Association of Social Workers) the national movement for Service User and Carer Involvement in health and social care and advocacy. By 1999 I was a National Health Service User myself.

In the late 1990s when the government introduced and began to develop the concept of Patient and Public Involvement in Health (PPI - which is synonymous with Service User and Carer involvement in Health), I was naturally very interested and followed the build up closely, registering an early interest in applying for membership of a local PPI Forum.

When, via some heated parliamentary exchanges, PPI was enacted and installed on 1st December 2003; ostensibly replacing Community Health Councils which were abolished on the same day, I had been appointed as a Forum Member. To one with some thirty years’ knowledge and experience of the concept it quickly became clear that the QUANGO established to oversee PPI, the Commission for Patient and Public Involvement in Health was making an unholy mess of administering it. I began to keep records from the start.

On 5th February, 2004, I was subjected to an act of disability discrimination by CPPIH (Laura McMurtrie the then CEO of CPPIH admitted errors claiming the act as a mistake, but the effect was, whatever the reason, discriminatory). I resigned my Forum membership.

With my abiding knowledge of and interest in Service User and Carer Involvement in Health, I retained a continuing interest as an independent observer and commentator in how PPI was developing. In my work with BASW in the early 1990s I had also been an inaugural member of the whistleblowing support organisation Freedom to Care, presenting the social work position statement on behalf of BASW at the Parliamentary launch of the organisation. My work for Freedom to Care included writing the chapter, “Whistleblowing and training for accountability” in the book (now a seminal work for social work education) “Whistleblowing in the Social Services - Public Accountability and Professional Practice,” Arnold, London 1998. That means I also have a continuing interest in public accountability.

I have researched and written several articles about the way CPPIH has mismanaged PPI and has left it staggering (see “Open all Areas” in Care and Health magazine 17th April, 2004 for example - an article which influenced a change of CPPIH policy). Research into how CPPIH is publicly accountable reveals only one real channel and that one not available to its volunteers - referral to the Parliamentary Ombudsman (see the copy of the e mail from Anthony Gilmour late of your Office which is appended).

To bring you right up to date: last July I launched my own website campaigning for Service User and Carer involvement in the management of PPI and recording the many anomalies created by CPPIH. My critical articles were on the site. At the end of August I received a letter from a firm of lawyers hired (with public money!) by CPPIH. The letter claimed defamation and made lurid threats about court action. The claim of defamation is nonsense because the facts are incontrovertible. On Sept 8th I received mail from my website host saying they'd had a letter from CPPIH's lawyers claiming it as defamatory and without checking the facts they closed me down.

Concerned forum members in London and elsewhere have been calling for a public inquiry into CPPIH for some time (see www.ppif.org.uk). My constituency MP, Richard Bacon (he has been very supportive since early 2004) has recently agreed to consider asking for an inquiry into CPPIH by the Commons Select Committee on Health (a line of accountability proposed by the 1998 government paper “QUANGOS: OPENING THE DOORS” but never taken up) and that is in the melting pot. I have an almost complete chronological dossier of evidence on CPPIH maladministration and we are also currently

exploring the possibility of presenting this to the All Party Parliamentary Group on PPI at their next meeting on 2nd November.

I can assure you I have no commercial or financial interest in all of this and neither do I have any allegiance to or contact with any political party. I act as an independent member of the public and all opinions and statements are mine and not representative of any other individual or body.

Purposes of my complaint (“What do you want the Ombudsman to do?”).

Against the background I’ve described above, this very specific instance came to my notice and, with a parallel motive to test out CPPIH accountability in vivo, I made a formal complaint. The ensuing defensiveness (not agreeing to meetings being recorded as set out in the original complaint and refusing Mr Fearn’s inclusion in meetings) and complacency in the way they concluded the negotiations left no option but to follow the Ombudsman avenue.

However, the referral to yourselves also presents a good incidental opportunity to examine how real and effective as a channel of accountability for CPPIH the Parliamentary Ombudsman option actually is, i.e. Does it work? And if not, where does that leave us in terms of effective public accountability?

Having said that, the purposes remain the same as stated on the referral form:

require CPPIH to exercise its statutory duties (which are many and various);

require CPPIH to observe the ‘Nolan’ Standards it asserts (i.e. “Selflessness, Integrity, Objectivity, Accountability - Holders of public office are accountable for their decisions and actions and must submit themselves to whatever scrutiny is appropriate to their office, Openness, Honesty and Leadership” - Third report of the Committee on Standards in Public Life);

investigate proper channels of accountability for QUANGOs;

remedy the injustice to the person in part 2 of the complaint;

examine and comment (publicly) on how CPPIH have dealt with this complaint.

My Complaint.

We need to establish the threshold criteria. I can state absolutely:

The complaint in both its parts is exclusively mine as an independent member of the public.

The complaint in both its parts is about CPPIH maladministration - “My complaints are about maladministration of the processes (my italics) ......about the way CPPIH has acted, or failed to act in the exercise of its statutory duties.” (my letter to Margaret Arindell of 8th March, 2005).

I am certain these criteria are legitimate. I hear what you say when you point out that accepting them could mean difficulties for the Office of the Parliamentary and Health Service Ombudsman and I am aware of the pressures reform of the system will bring but that is hardly my concern. I am convinced, as an independent member of the public, that it is firmly in the public interest that the Parliamentary Ombudsman should investigate both of these matters.

My Detriment.

My complaint is about a small fragment of of CPPIH administrative incompetence but a fragment that has the merits of being clearly evidenced and relatively simple to investigate.

It is also a fragment of the whole that has deprived me of the right to participate as a service user in the statutory arrangements for participation that is PPI. I cannot do this while the maladministration continues. This fragment represents a much wider swathe of maladministration on the part of CPPIH and its staff.

By its maladministration CPPIH has alienated thousands of volunteers (at the beginning of February 2005, the numbers of resignations from PPI Forums since 01.12.03. totalled 1333 - FoI Act information from CPPIH dated 01.02.05. - I am currently awaiting a FoI Act update). CPPIH have built a system which is unusable by very many service users who would wish to be involved. In this context the investigation of both parts of my complaint is not only in my interests as the complainant, it is very much in the public interest as a whole.


It seems to me, although not directly relevant to the narrow confines of our discussion, this is a good place to look the problems around CPPIH accountability. It is certainly relevant to the reform of the Ombudsman Services and perhaps you could pass this section of my letter on to the right quarter.

Looking at it objectively, “.....a robust and user-friendly system for the investigation and resolution of complaints” about CPPIH could possibly have halted the now widespread maladministration of PPI in the early stages. The current position is:

in CPPIH there is a hierarchy of stages for the investigation of complaints - two internal stages; then to the ‘parent body’ and the Minister responsible; then to the Parliamentary Ombudsman.

Concerns expressed to the DoH and Minister of State for Health, Rosie Winterton via my MP have merely resulted in the matters being bounced back to CPPIH with the comment that they are a body independent of government and responsible for their own policies.

PPI Volunteers with CPPIH are simply excluded from any independent external investigation because they are classed as “personnel” and “personnel matters” cannot be dealt with by the Ombudsman.

This means PPI volunteers are completely denied the “...right to expect a robust and user-friendly system for the investigation and resolution of complaints.” They have no trade union and no other avenue for resolution.

Volunteers have no rights under the Public Interest Disclosure Act 1998, therefore no protections in relation to whistleblowing.

CPPIH staff are not appointed by the NHS Appointments Commission and so there is no recourse to the Office of the Commissioner for Public Appointments and their Code of Practice.

CPPIH, as a QUANGO, is not covered by the Standards Board as any other public body would be.

CPPIH’s PPI volunteers have had no protections under the Disability Discrimination Acts and will still not have any until Dec 2005.

Taking the points in this letter, especially as interrelated, I am sure you will agree that the investigation of my complaint in both parts is of the utmost importance to the public interest.

Please don’t hesitate to contact me again (e mail is preferable) if you would like further information or evidence.

Yours sincerely.

Mike Cox.

c.c. Richard Bacon, MP.
John Fearn.


Dear Mr Cox

Further to your request under the Freedom of Information Act 2000, I would respond to your queries as follows:-

1. There was 66 staff vacancies advertised between April 1st 2005 and
12th September 2005.
2. None were advertised in the print media as this would not have been cost effective for short-term interim roles.
3. 44 of the vacant posts were advertised internally only.
4. 10 were advertised internally and/or on the CCPIH website.
5. 10 were advertised on jobsgopublic website.
6. 2 were filled by internal secondment.
7. 20 were filled by direct internal promotion.
8. 1 was filled by direct internal transfer.
9. 19 of the posts were filled by direct external transfer.
10. Pre-screening arrangements were fully visible, application forms are matched against job description, short listed candidates, and competency based panel interviews.
11. Pre-screening is conducted by the relevant Line Manager and Human resources.
12.Competency based panel interviews were used.

All recruitment and selection procedures adhere to ACAS and CRE best practice.

You may request that the Commission review this response, and if not satisfied with its subsequent reply, may contact the Information Commissioner's Office should you wish to complain about the Commission's response to your request under the Act.

Yours Sincerely

CPPIH Operations and PPI Governance Manager, 18.10.05.


FOI/EIR Complaints Resolution,
Information Commissioner’s Office,

Dear Madam/Sir.

Refusal to provide information under the
Freedom of Information Act 2000
by the
Commission for Patient and Public Involvement in Health

I have enclosed copies of:

  1. my original request;
  2. their reply to that;
  3. my complaint at their refusal;
  4. their response to my complaint;
  5. my article “Suitable Jobs for Suitable People?”

Would you please review the CPPIH decision. The reasons for asking for the provision of this information are in number 3 in the list: my complaint to CPPIH at their refusal.

I must further explain that, since its inception, I have been a close observer of CPPIH and more than once have been heavily critical of its competence, honesty and lack of public accountability. In April 2004, for example, an article of mine was published which pointed out that CPPIH was deploying its volunteers with official validation to a variety of settings where there are vulnerable people, including children - without Criminal Records Bureau checks. That article, published at the time of the Bichard Inquiry into the Soham tragedy, was influential in CPPIH having to review and change their policy on this so that all their volunteers are now CRB checked.

In June of this year I set up a website, www.ppeyes.co.uk, as an independent monitor of the progress of Patient and Public Involvement in Health (PPI) and a campaign vehicle for the proper inclusion of service users and carers in the governance of PPI. The website contained another article of mine “Suitable Jobs for Suitable People?” which pointed out that CPPIH senior managers had presided over incompetence and equivocality in PPI.

Evidence of CPPIH incompetence and equivocality is plentiful. Not only were several examples of this clearly displayed on ppeyes, examples are there for all to see on the Department of Health website (in their publication of the consultation results arising from the John Reid ‘Arms Length Body Review’) and on websites such as www.ppif.org.uk.

At the end of August I received a letter from Hill Perkins, solicitors claiming defamation and threatening court action if I didn’t remove the above mentioned article from my website and pay them several hundred pounds for their costs. I ignored that letter but published it on the website for others to see.

On 8th September I received an e mail out of the blue from my website host, ‘Vision’ which said: “Unfortunately we're unable to continue hosting your site ppeyes.co.uk for legal reasons following defamatory allegations made on your site. This follows a letter sent from the law firm Hill Dickinson.”

So we have an arms length body of government successfully using intimidatory tactics to gag a critical whistleblower - IMHO, a serious limitation of freedom of expression - and spending public money to do so.

In the circumstances I hope you will agree that the public interest will be served by the provision of the information I requested. If that information is released I intend to use it primarily in two ways: firstly as part of a dossier of evidence to be presented to the Parliamentary Select Committee on Health (I have, via my constituency MP, Richard Bacon, a letter from Kevin Barron MP, Chair of the Select Committee on Health saying Rosie Winterton is to be interviewed by the Select Committee on 15th December and will be asked questions about PPI); and secondly as part of a major complaint which will probably reach the Parliamentary and Health Service Ombudsman. (Mike Cox 03.11.05.)


At last - Ombudsman action!

Dear Mr Cox

Thanks for letting me have your new email. I thought I would try it out by sending you a quick update. CPPIH have been in contact with me saying that they expect to provide me with a response to my enquiry regarding your complaint in the next few days. Once I get it I will go through it in detail and then contact you.

John Donnelly - Associate Investigator (14.11.05.)



!!!!And a Result!!!!

Dear Mr Cox

I have now received a reply from CPPIH and they have accepted that they got things wrong in your case. Following my enquiry they have reviewed the situation of Dr JM and have discovered that they had previously been given incorrect information and that the NHS trust for which she is a non-executive director does commission services from Waveney PCT therefore the doctor is prohibited from being a member of the Waveney PPI Forum. CPPIH have written to her advising that her resignation from the Forum is required if she wishes to continue as a non-executive director. CPPIH have also accepted that they sent you an inadequate response when they handled your complaint at stage two of their complaints procedure.

My view is that CPPIH behaved mal-administratively in respect of both the above and that this merits criticism from the Ombudsman. CPPIH should offer you a written apology and give you a full explanation of the action they have now taken regarding the matters you raised concerning the doctor’s membership of Waveney PPI Forum. I stress, however, that only certain managers within the Ombudsman’s Office are empowered to determine the outcome of complaints and my view regarding this has yet to be ratified by one of these managers. As soon as it has been a letter will be sent to your MP and copied to you and CPPIH.

As I explained to you on the telephone the other issue you raised concerning Mr JF is outside the legal jurisdiction of the Ombudsman and cannot be investigated because it relates to a personnel matter. Also, because it concerns another person you have not suffered any personal injustice as a result of it, however, I understand from speaking to Mr JF that he has submitted another complaint to the Ombudsman although I am not certain what the present status is of this.

It is clear that you were justified in the complaint you made and it is to the credit of CPPIH that they have so readily accepted they were wrong and have made no attempt to cover this up. I hope you are satisfied with the outcome.
Yours sincerely.

John Donnelly,

Associate Investigator (21.11.05)


Thanks Mike, I have forgotten exactly where you are, and which CPPIH region has been concerned, could you let me know? This is a great outcome, and I am curious to know how on earth they could make such a basic error. CPPIH is getting itself cornered on a number of issues; I sent off a message yesterday on behalf of xxxxx, xxxxxx and myself that will not be too easy to answer. We will communicate about that when the time is right, i.e.when we have given SL the opportunity to deal with the points we raised. Meantime, it would be helpful to know if you or xxxx had a 'Private and Confidential' letter from Steve Lowden recently?

Best wishes

A London PPI member 21.11.05


Hi Guv!
1.Congratulations on the sterling work that has been accomplished in connection with PA 4865.
2.Email - JD/MC 21 Nov Para 3 Your enquiry re present status of Complaint OPCA PA 8140/0021
From Attachment Fax Letter 2 it will be seen a complaint has been lodged in accordance with the Who can complain
paragraph, advocated within OPCA's "Complaining about us" Brochure . This has been acknowledged, but, being
within the permitted 20 working days period the promised full reply has not yet been received.
3.In para 2 of Attachment Letter 2, I refer to instances where CPPIH has resorted to misrepresentation. I must point out,
however, that again they have utilised this ploy and have successfully convinced you that "no attempt has been made
to cover up". The excuse that incorrect information has been given is false because in Mike Cox's Formal Complaint to
CPPIH of 17th February 2005 in paras 4 & 6 it clearly indicated that Dr JM was a non-executive director of Suffolk
Mental Health Partnership NHS Trust, who supplied services to Waveney P.C.T. and thereby was disqualified from
membership of the latter's PPI Forum, this being in breach of S.I.2003 Clause 4 (1) (e) The Patient Forums
(Membership & Procedure) Regulations 2003. Furthermore CPPIH were notified of the foregoing facts by myself by
means of an email to manager of their Regional Office on 24th March 2004 again on 24th March by a personal visit
to the same office. The fact that this was communicated to CPPIH is evidenced by the fact that such action by
myself was considered to be impropriety sufficient to charge me with bringing my Forum to disrepute.
4. It is ironic that in their attempt to correct their failure to correctly implement SI 2123 Clause (4) (e) they have again
committed maladministration in the application of their own Standard of Conduct Policy & Procedures for Members
of PPI Forums. They have written to Dr JM indicating she must resign from Waveney PCT PPI Forum if she wishes to retain her
non-executive position. Section 6. Disqualification from appointment Section of S of CP&P for M of PPI Forums,
however, states - "if CPPIH is informed by declaration or discovery that a member is disqualified from holding
office under section 4 of SI 2123, it is obliged to end that persons membership by giving written notice.

Since commencing this email I have been in conversation with Paul Hartland on the above matters and others concerning Judicial Review. He is very worried about overlap concerning PA 4865 & PA. 8140, but, I believe it is the overlap that has led to straightening a very twisted route.
Best Wishes. J F 22.11.05.


Hi Mike

Thanks for letting me see this. It will stay in confidence.

I think it is progress, and it does show that your determination and articulation get people answering for their lack of professionalism. I am glad the doctor will be forced to resign, if they are breaking agreements they should be called to task. Cheeky beggar - they really are.

Well done soldier. The army can learn alot from you.

It is also great to see some justice.

Take care and have a big hug for services above and beyond.

M. 22.11.05.


Hello All. (to a London PPI group)

On 4th October I made a FoI Act request to CPPIH. This was to update information I had previously received along with some new questions. My questions were:

1. the number of people nationally who have resigned from PPI Forum membership since 01.12.2003;

2. the number of PPI Forum members who have been subject to any kinds of disciplinary procedures by CPPIH since 01.12.2003;

3. the number of PPI Forum members, since 01.12.2003, who have been dismissed as a result of disciplinary procedures by CPPIH;

4. the number of PPI Forum members, since 01.12.2003, who have resigned as a result of disciplinary procedures by CPPIH;

5. since 01.12.2003, the number of PPI Forum members known to CPPIH who have alleged disability discrimination by CPPIH;

6. since 01.12.2003. the number of complaints of disability discrimination against CPPIH which have been upheld;

7. since 01.12.2003. the total number of complaints of all kinds made against CPPIH;

8. the number of PPI Forums currently with less than seven members;

9. the total number of people CPPIH or its Commissioners have threatened with legal action since 01.12.2003.;

10. the total number of staff suspended by CPPIH since 01.12.2003.;

11. the total number of staff dismissed by CPPIH since 01.12.2003.

12. the total number of staff who have left CPPIH since 01.12.2003. for whatever reason;

13. the trade union(s) representing CPPIH staff;

14. the total number of problems reported by PPI Forums which remain currently unresolved.

I received their response yesterday. it is:

1. - 2,248;

2,3,4,5, ``the commission has previously provided this information to you and is not obliged to comply with a subsequent identical or substantially similar request.``

6. ``the commission does not hold this information on record.``

7. - 315.

8. - 146.

9. - 1.

10. - 0.

11. - 0.

12. - 139.


14. ``This is a very general question about problems. We would require further specific information in relation to this point in ordeer to identify and locate the information.``
With 2.3.4. and 5., these are repeated questions but they ask for an unpdate of information received on 01.02.05. For some reason is CPPIH being equivocal about this?

The info received for these questions on 01.02.05. was:

2. - 52.

3. - 3.

4. - 12.

5. - 12.

For a particularly important question at 6. it is surprising CPPIH doesn't hold this information on record.

9. My question was about `threatened` legal action and I am in touch with more than one person. Why the inaccuracy?

14. Is specific, not general. Why is it evaded?

The information is important to me because it supports my opinion that CPPIH and its senior managers have been incompetent and equivocal (and even the information received does that). Their claim that this opinion is defamatory led to them threatening me with legal action and being successful in closing down my website. The figures of 2248 resignations since 01.12.03. and 146 forums with less than their optimum number of forum members should also be of political interest as it is yet more evidence of the government's failure to provide an effective replacement for CHCs.

I will of course be complaining about the gaps and will keep you informed.


Mike. 04.12.05


Thanks for this. Clearly some concerted action is needed. There are now a number of very clear cases of incompetence or worse. I think that things may be worse in the South and East, but cannot be sure. How can we pull this together?

One possibility is the nascent Association of Forums: I am involved in the elections for London, and my own agenda is to develop an organisation strong enough to replace the Commission - it would need it's own FSO and a paid secretary, but it couldn';t be worse, and would give us a 'bottom up'; structure rather than the current 'top down' system. (London PPI member 05.12.05.)


Hartland Paul
Sent: 07 December 2005 17:54
To: 'micox@btopenworld.com'
Cc: 'john@donnelly682.wanadoo.co.uk'
Subject: Parliamentary Ombudsman complaint PA-4865

Mr Cox
I understand that you have been in contact with Mr John Donnelly, who is one of this Office's Associate Investigators. As I am sure he told you, Mr Donnelly's role is to assist us in carrying out investigations into complaints. He then reports back to a manager in this Office with his recommendations on the merits of a case. It is then for the manager to consider his recommendations and to make a decision on the merits of the case, exercising the Ombudsman's delegated authority. I am the manager to whom Mr Donnelly has reported back, and I am emailing you to let you know in advance that I will shortly be sending you a copy of my decision in your case. It is, as yet, only in a draft form and therefore you will have the opportunity to comment.
Paul Hartland

Investigation Manager
Office of the Parliamentary and Health Service Ombudsman
Email: paul.hartland@ombudsman.org.uk
Telephone: 020 7217 4255


Hi Mike,

Today I've received papers from the CPPIH which state, "Does not appear to be an actual complaint against ME prior to original suspension/withdrawal."

They've known all along that there have been no complaints against me, so why was I dismissed then re-instated as a suspended member. They failed to address the original issue of some people obstructing the rights of BME to attend meetings and my struggles to defend an actual incident of racism. Therefore, I will be proceeding with matters in the High Court.

The re-convened Appeal Hearing is on Monday, 19 December, at National headquarters and I've decided not to attend as the new investigation agreed on has not been completed. And, of course, I will be making another visit to the offices of the CRE to ask for advice on tackling institutional racism in Chippy.

Please fine attached my letter to the CPPIH informing them of my decision. They think a cover up is easy, but I am not going to allow it to happen. I will expose them and get the truth into the public domain.

regards, (a Midlands PPI member 16.12.05.)



article in HSJ 17/11/05 by Ian Lloyd ian.lloyd@emap.com (can't find an electronic copy so have had to type out)


Quality compromised by 'on the hoof' PPI agenda.

The governments patient and public involvement agenda was introduced 'on the hoof' and imposed within an 'unrealistic deadline' which compromised the quality of forum members.
Those are the conclusions of Leslie Forsyth, director of PPI operations at the Commission for Patient and Public Involvement in Health, which is being abolished in the government cull of arm's length bodies.
Speaking at an HSJ Conference Mr Forsyth urged delegates not to 'accept unrealistic deadlines' as the NHS moves into a new PPI era.
He said CPPIH had been forced to recruit 5,000 patient forum volunteers in 12 weeks against the commission's wishes, after government policy was put together 'on the hoof' following the abolition of CHCs.
'It took us a year to recover from that activity - just in time to get abolished, strangely enough' said Mr Forsyth
'Inevitably recruiting 5,000 people in 12 weeks made it an exercise in quantity. We tried very hard with quality as well, but all politicians were interested in was: "Are you going to hit the target?" The consequences of that were quite significant for us as an organisation. The intention had been to have a slower build up and lager forums, but that was put to one side as it simply wasn't practical."
The abolition of CPPIH, originally planned for August next year, has been delayed until 2007 and the reorganisation of patient forums put on hold. A new PPI resource centre, designed to share best practice, is expected to be launched in January.
Mr Forsyth urged the DoH to ensure that the future PPI agenda was resourced adequately. 'public engagement isn't cheap, but it tends to be done on the cheap. We are not spending enough on what is a really complicated, difficult and challenging area of work."
He added: 'PPI isn't a bolt-on activity. It is not something you do after everything else is done. But at the moment it is. It is crucial, but it tends to be thought about after everything else is done and is not really plumbed into the system."

The PPI Resource Centre: The Missing Link?
The proposed public and patient resource centre will be the missing piece of the PPI jigsaw, according to senior project manager at the DoH Samantha Hudson.
The centre, expected to be launched in January next years, will provide support and info and be a hub for people to exchange experiences and learning about PPI in the health service, Ms Hudson said.
'Current guidance, support and information on effective practice just seems to be scattered around the country. It feels as though lots of quite good pieces of the jigsaw just needs a place where they can come together.'
The centre will also help hold NHS commissioning arrangements to account. Ms Hudson said: "There is the need for an informed patient perspective, someone to ask questions like why are you commissioning that service? Is it the right service? Is it the right quality? Have all health inequalities been considered?"
She added that the original idea to brand the resource as a 'centre of excellence' was universally rejected because it 'implied it was going to be a body of experts who were going to tell us how to do involvement - in fact it is going to be the other way round.'

My immediate thoughts are, yes it was done too quickly and without due thought. However, the criticising the 'quality' of recruited members immediately puts my hackles up!

I'm pleased that there will be a resource centre but concerned this will mirror other work being done. I do hope that mh and ld service users and carers have been involved in designing and setting up the resource centre as we hold more keys to successful involvement than the DoH do. I'd be really interested to hear how other PPIs fared with the Healthcare Commission standards signing off events. Also like to hear about involvement in primary care.

Incidentally, you can see the HSJ on it's site now, they have an archive for mental health topics http://www.hsj.co.uk/nav?page=hsj.home and you can also sign-up for an email newsletter. If there's an article which looks good but you can't view it online I can get a copy of it for you.

from an East Anglian prospective PPI member 17.12.05.



The complaint
1. Mr Cox complained that:
CPPIH had appointed a Patient and Public Involvement Forum member in breach of the relevant statutory instrument. In particular that they appointed a member, whom I shall refer to as Dr X, whom Mr Cox alleges is a non-executive director of Suffolk Mental Health Partnership Trust (the Suffolk trust) as well as chair of the Patient and Public Involvement in Health Forum in Waveney (the Waveney forum);
CPPIH have behaved unfairly towards the person who reported this to them. This relates to the disciplinary action CPPIH took on receipt of a complaint about the conduct of a member of the Waveney forum, whom I shall refer to as Mr Y. Mr Cox believes that this was a reprisal for the fact that Mr Y had reported his concerns about Dr X.

Mr Cox was further concerned about the adequacy of CPPIH's response to his complaint.

The Ombudsman's jurisdiction
2. The Ombudsman derives her statutory powers from the Parliamentary Commissioner Act 1967 (the Act). Section 10 (1) of Schedule 3 to that Act (matters not subject to investigation) specifically debars the Ombudsman from considering complaints about "action taken in respect of appointments or removals, pay, discipline, superannuation or other personnel matters, in relation to...service in any office or employment under the Crown or under any authority to which this Act applies."

3. Section 5 of the Act states that the Ombudsman can investigate complaints of maladministration made, in writing and via an MP, by a member of the public who claims to have sustained injustice as a result of that maladministration.

The decision
4. I have concluded that Mr Cox's complaint falls outside the Ombudsman's jurisdiction.
The rest of this letter goes on to give my reasons for that view.

5. The appointment of Dr X to the Waveney PPI Forum, and whether that was contrary to the regulations governing such appointments, is a personnel matter. As such, it is caught squarely by the limitation on the Ombudsman's jurisdiction as outlined in paragraph 2 above. I therefore can make no comment on that.

6. Similarly, the disciplinary action that CPPIH took against Mr Y is a personnel matter.
Even if that were not the case, it is difficult to see what unremedied personal injustice Mr Cox is suffering as a result, or indeed why he, rather than Mr Y, is complaining about that matter (the consideration outlined in paragraph 3 above).

7. The third part of Mr Cox's complaint was the adequacy of CPPIH's response when he raised his concerns about Dr X's appointment. However, CPPIH's response to a complaint about a personnel matter is, for our purposes, "action taken in respect of appointments...or other personnel matters." It is therefore outside our remit to investigate that part of the complaint.

8. I am sorry to send a letter which Mr Cox may well find disappointing, and I am also sorry that we did not alert Mr Cox to the fact that his complaint was outside our jurisdiction sooner. However, I hope I have explained clearly why I do not believe that there is any grounds for our further intervention in this matter.

Paul Hartland,
Investigation Manager.


12th December, 2005.
Paul Hartland,
Investigation manager,
Parliamentary and
Health Service Ombudsman,
Millbank Tower,

Hello Mr Hartland.

Your Draft Letter ref: PA-4865/0028

Thank you for this but I have to say, with respect, that your synopses of my complaint(s) are inaccurate. I have then attached a separate sheet setting out your text with my corrections alongside.

The rest flows from this, but first let me deal with your paragraph 6.

Your paragraph 6. You will see from my corrections I was not complaining about “the disciplinary action that CPPIH took against Mr Y...” My complaint in its second part was about the way the CPPIH behaved towards a whistleblower - their behaviour and their process in this being, in my opinion, maladministration. What kind of maladministration is set out in my corrections.

There seems to be an ‘automatic assumption’1 here that my complaint is a complaint on behalf of another person. It is Not. The “unremedied personal injustice” to me, as well as yet another component of the CPPIH’s mismanagement of PPI which excludes me from participation in PPI, is clear in my explanations of my special interests in whistleblowing and accountability per se as set out in my letter of 13.10.05. to your investigator, John Donnelly (copy enclosed). The other element of injustice to me is that which is being demonstrated by my complaint(s): the CPPIH has very limited public accountability for maladministration and observance of ‘Nolan’ standards.

And now we must turn to my complaint(s) as they stand:

of the first part, as Mr Donnelly’s e mail to me of 21.11.05. reveals, this is now resolved. That e mail says: “I have now received a reply from CPPIH and they have accepted that they got things wrong in your case. Following my enquiry they have reviewed the situation of Dr JM and have discovered that they had previously been given incorrect information and that the NHS trust for which she is a non-executive director does commission services from Waveney PCT therefore the doctor is prohibited from being a member of the Waveney PPI Forum. CPPIH have written to her advising that her resignation from the Forum is required if she wishes to continue as a non-executive director.” Therefore, any intervention by the Parliamentary Ombudsman here is redundant.

of the second part, I remain insistent that this part of my complaint(s) is about the way the CPPIH failed to take notice of a whistleblower and in doing that failed in their public duty. It is not about a “personnel matter”. This is doubly iniquitous as although your jurisdiction lumps volunteers together with employees as “personnel”, volunteers have no rights under employment legislation and, in particular, have no rights under the Public Interest Disclosure Act 1998.

of the third part, Mr Donnelly’s e mail of 21.11.05. also says: “CPPIH have also accepted that they sent you an inadequate response when they handled your complaint at stage two of their complaints procedure...It is clear that you were justified in the complaint you made and it is to the credit of CPPIH that they have so readily accepted they were wrong and have made no attempt to cover this up. I hope you are satisfied with the outcome.” I am not satisfied with the outcome of this part. It seems that the CPPIH only took the trouble to examine their own practice when approached by a Parliamentary Ombudsman’s investigator. If they had done this instead of demonstrating their “unwillingness to treat the complainant as a person with rights;” “ignoring valid advice or overruling considerations which would produce an uncomfortable result for the overruler”; their “failure by management to monitor compliance with adequate procedures”; and their “cavalier disregard of guidance which is intended to be followed in the interest of equitable treatment of those who use a service”, My complaint to yourselves would not have been necessary. Please deal with this.

I must add a note here: Mr Fearn’s actions and activities following my receipt of Mr Donnelly’s e mail of 21.11.05. have nothing to do with me. He did have sight of that e mail but I specifically asked him to do nothing until I had received the confirmatory letter. I no longer have contact with Mr Fearn although that in no way affects my complaint(s) nor diminishes the injustice he has personally suffered.

Yours sincerely.

Mike Cox.

c.c. Richard Bacon, MP for Norfolk South.


Your Draft

1) Mr Cox complained that: CPPIH had appointed a Patient and Public Involvement Forum member in breach of the relevant statutory instrument. In particular that they appointed a member, whom I shall refer to as Dr X, whom Mr Cox alleges is a non-executive director of Suffolk Mental Health Partnership Trust (the Suffolk trust) as well as chair of the Patient and Public Involvement in Health Forum in Waveney (the Waveney forum);

2) CPPIH have behaved unfairly towards the person who reported this to them. This relates to the disciplinary action CPPIH took on receipt of a complaint about the conduct of a member of the Waveney forum, whom I shall refer to as Mr Y. Mr Cox believes that this was a reprisal for the fact that Mr Y had reported his concerns about Dr X.

3) Mr Cox was further concerned about the adequacy of CPPIH's response to his complaint.


1) Mr Cox complained that: there was (by the CPPIH) “...maladministration of” a statutory instrument. “Although individuals are named, they are not the subject of the complaints. The complaints are, in the words of CPPIH: “....about the way CPPIH has acted, or failed to act in the exercise of its statutory duties.””1 This is a complaint about a “...breach of Statutory Instrument 2003 No. 2123, The Patient’s Forums (Membership and Procedure) Regulations Clause 4 (1) (e).”2 Personnel matters are incidental to the complaint.

2) Secondly, that the CPPIH behaved in such a way to the whistleblower who attempted to report the above maladministration to them in the first place that it constituted: “unwillingness to treat the complainant as a person with rights; offering no redress...; faulty procedures; failure by management to monitor compliance with adequate procedures; cavalier disregard of guidance which is intended to be followed in the interest of equitable treatment of those who use a service; partiality...”3

3) Mr Cox was further concerned about the CPPIH’s bland denial of the maladministration and the inadequate way it dealt with his complaint.



19 December 2OO5

Dear Mr Bacon

Mr Mike Cox, The Lilting House, Beccies Road, Thuriton, Norfolk NRI 4 6AJ

1. You wrote to the Parliamentary Ombudsman on 18 May 2005 enclosing a complaint from Mr Cox against the Commission for Patient and Public Involvement in Health (CPPIH). Acting with the authorisation of the Ombudsman under the provisions of the Parliamentary Commissioner Act 1967, this letter constitutes my report of the investigation. Mr John Donnelly, one of the Ombudsman's Associate Investigators, has assisted me in the course of this investigation.

The complaint

2. Mr Cox complained that CPPIH breached a statutory instrument by appointing a particular member, whom I shall refer to as Dr X, to the Waveney forum. He further complained that when a forum member, whom I shall refer to as Mr Y, reported this alleged breach to CPPIH, not only did they take no action, but in fact they took disproportionate disciplinary action against him. Mr Cox believes that this was a reprisal for the fact that Mr Y had reported his concerns about Dr X. Mr Cox was further concerned about the adequacy of the Commission's response to his complaint.

The Ombudsman's jurisdiction

3. The Ombudsman derives her statutory powers from the Parliamentary Commissioner Act 1967 (the Act). Section 10 (1) of Schedule 3 to that Act (matters not subject to investigation) specifically debars the Ombudsman from considering complaints about "action taken in respect of appointments or removals, pay, discipline, superannuation or other personnel matters, in relation to...service in any office or employment under the Crown or under any authority to which this Act applies."
4. Section 5 of the Act states that the Ombudsman can investigate complaints of maladministration made in writing and via an MP by a member of the public who claims to have sustained injustice as a result of that maladministration.

The decision

5. I have concluded that Mr Cox's complaint falls outside the Ombudsman's jurisdiction. The rest of this letter goes on to give my reasons for that view.


6. The appointment of Dr X to the Waveney PPI Forum, and whether that was contrary to the regulations governing such appointments, is a personnel matter. As such, it is caught squarely by the limitation on the Ombudsman's jurisdiction as outlined in paragraph 3 above. I therefore can make no comment on that. I am aware that Mr Cox believes that the personnel aspect is incidental to his main complaint, which is that CPPIH breached a statutory instrument. However, the action he refers to which he alleges constituted the breach was action taken in regard to personnel issues. I am clear that this is outside our jurisdiction.

7. Similarly, the disciplinary action that CPPIH took against Mr Y is a personnel matter. Even if that were not the case, it is difficult to see what unremedied personal injustice Mr Cox is suffering as a result, or indeed why he, rather than Mr Y, is complaining about that matter (the personal injustice consideration outlined in paragraph 4 above). Mr Cox has clarified this part of his complaint in his comments on my draft report. He said that CPPIH "failed to take notice of a whistleblower and in doing that failed in their public duty." That does not alter the fact that the so-called whistleblower was raising personnel matters with CPPIH; their handling of the allegations was all part of action they took in relation to personnel issues. It is therefore outside of our jurisdiction. I acknowledge that Mr Cox considers it iniquitous that "our jurisdiction lumps volunteers together with employees as personnel". However, the point here is not the status of the whistleblower, but the nature of what he was bringing to CPPIH's attention: i.e. a personnel issue. Their handling of that issue is outside our jurisdiction, regardless of whoever raised it with them.

8. This brings me to the third part of Mr Cox's complaint, which was the adequacy of CPPIH's response when he raised his concerns about Dr X's appointment. CPPIH's response to a complaint about a personnel matter is, for our purposes, "action taken in respect of appointments...or other personnel matters." That goes for when Mr Cox raised a complaint as well as Mr Y. It is therefore outside our remit to investigate that part of the complaint.


9. I am sorry to send a letter which Mr Cox may well find disappointing, and I am also sorry that we did not alert Mr Cox to the fact that his complaint was outside our jurisdiction sooner. However, I hope I have explained clearly why I do not believe that there is any grounds for our further intervention in this matter. I have sent a copy of this letter direct to Mr Cox and to CPPIH.

Yours sincerely

Paul Hartland Investigation Manager


Hi Mike, Sorry to hear about the reversal. The URL is not working for me.

An ex London PPI member.

-----Original Message-----
From: Mike Cox [mailto:micox@toucansurf.com]
Sent: 27 December 2005 18:25
To: nimhe service user network; Hilarybarnard@aol.com;
janetalbu@blueyonder.co.uk; nick_green@blueyonder.co.uk;
paul.burns@btinternet.com; Richard Bacon; mental magazine
Subject: The Ombudstwist


Hello Xxxxxx.

With extreme embarrassment I realise I played the wrong coda. The URL should be: http://nosenears.modblog.com (not .co.uk). Sorry!!!

Its not really a reversal. I expected this proof of CPPIH's virtual unaccountability from the start and the complaint was a test of this. The bonus is that CPPIH admitted the maladministration (which is yet more evidence of their incompetence) and have taken steps to remedy the breach of the regulations. It is to be hoped that they will also learn from it and perhaps afford whistleblowers some respect in the future.


Mike. (28.12.05.)


Hello Everyone.

Hope you've all made a good recovery from Christmas.

A few weeks back I posted an e mail from the Parliamentary Ombudsman's investigator which said that CPPIH had admitted the maladministration I had complained about. Since then there's been a quite extraordinary turn. I've posted the correspondence which sets this out on http://nosenears.modblog.com (due to Modblog’s problems this is now difficult to load. MC 11.07.06.)- It is far too lengthy to post here.

In essence, even though the CPPIH has admitted the maladministration, the investigations manager of the Parliamentary Ombudsman (who I am told is an ex police chief inspector) has, subsequent to the admission e mail, decided that the whole thing is a "personnel matter" and cannot be dealt with by the Ombudsman!

I had expected this from the start and it bears out my assertion that the Quango CPPIH is virtually unaccountable to any member of the public. It is scandalously undemocratic. If we take the PO investigations manager's arguments to its logical conclusion we see that as CPPIH is a body that deals with appointments, no complaint whatever can be made against it.




Published on nosenears.modblog 27.12.05.
Recap on CPPIH accountability issues:

A question raised in the 1st induction day for PPI members 17.11.03. by me was: MPs, local authority councillors, NHS trusts and most members of public bodies are clearly accountable, either to their electorate, the Standards Board, the public Ombudsman bodies, the NHS Appointments Commission, The Office of the Commissioner for Public Appointments etc. What are the channels of accountability for the Commission for Patient and Public Involvement in Health? There was no answer.

In February 2004 I was discriminated against by CPPIH at the 2nd induction day because of a disability. I asked the Disability Rights Commission what I could do about this. The reply was: nothing - volunteers have no rights under disability discrimination legislation. So there was no means of bringing CPPIH to account for disability discrimination.

Further research brought clarity from Anthony Gilmour, Jurisdiction Advisor at the Office of the Parliamentary and Health Service Ombudsman, 12.05.04. CPPIH is a Non Departmental Public Body (NDPB) or QUANGO. NDPB Accountability is firstly via internal formal complaint, then, if not resolved, to the “parent body” (in this case the Department of Health and Minister of State), then, if not resolved, by referral to the Parliamentary and Health Service Ombudsman. Mr Gilmour added that the government had attempted to further clarify NDPB accountability in its document “Quangos, Opening the Doors” published in 1998 in which it recommended that Quangos should be accountable to the relevant Parliamentary Select Committee.

Parallel research about how CPPIH could be held accountable for breaches of Nolan Standards (not dealt with by PO) with the Office of the Commission on Standards in Public Life left that Office scratching their heads. There is no channel of accountability for QUANGOs in this context and as Anthony Gilmour said: “There is some overlap with the kinds of thing dealt with in the Committee’s (Nolan) reports... But the Committee’s concerns have largely been about matters which could hardly be covered by us” (Parliamentary Ombudsman) - my parentheses.

Subsequent referrals over 2004 and early 2005, via my constituency PM Richard Bacon, to the CPPIH’s ‘parent body’ DoH and the Minister of State, Rosie Winterton by me and others, via their MPs have merely resulted in responses which said something like. I have copied your letter to CPPIH to deal with as they are an independent body and they make their own decisions!

17.02.05. Formal Complaint to CPPIH. Dual purpose: a) a genuine and incontravertible serious breach of regulations by CPPIH; and b) a test of the accountability structure.

A sequence of discussions and responses with CPPIH ended on 03.05.05. with a curt: “Both aspects raised in your letter have already been fully investigated and taken through all stages of the Commission’s Complaints policy and procedures (sic). As a result I no longer see the need for us to meet to discuss matters that are closed.”

08.05.05. My referral of the complaint to the Parliamentary and Health Service Ombudsman via my constituency MP Richard Bacon (who has been a stalwart throughout). See Ombudstwist 1.

After several letters apologising for delays, John Donnelly, a PO inquiry officer contacted me on 18.10.05. - over six months from referral! He expressed doubts so a long letter to him. See Ombudstwist 2.

21.11.05. E mail from John Donnelly saying CPPIH had admitted their maladministration but PO action needs confirmation from a senior manager. See Ombudstwist 3.

08.12.05. Letter from Paul Hartland, Investigation Manager, Parliamentary and Health Service Ombudsman’s Office, with a draft report for my MP enclosed. See Ombudstwist 4.

12.12.05. My reply to Paul Hartland enclosing corrections. See Ombudstwist 5.

19.12.05. Paul Hartland’s final report to my MP, Richard Bacon (this is marked “in confidence” but, as the data subject, I am publishing it here), washing the Parliamentary Ombudsman’s hands of the matters. See Ombudstwist 6.


Published on nosenears.modblog 29.12.05.
At last we have a conclusion to my complaint to the Parliamentary Ombudsman. I have to say I was cynical enough at the start to expect the conclusion we have. J F can bear me out on that.

The crux of the matter is that the anomaly complained about was chosen carefully because most of the motivation behind my original complaint was to test out CPPIH's public accountability. The main subject of the complaint was chosen because it was an incontravertible piece of maladministration by CPPIH and it was not, per se, a "personnel matter".

I must also say the complaint was not about a particular person being appointed (although there had to be doubts about her impartiality). It was about the seminal principle of PPI Forum independence and ensuring that its members have no vested interests in anything else - that is why the regulations say a non-executive director of a NHS trust cannot be a member of that trust's PPI Forum. It was this that was gaily being breached by the person concerned and CPPIH. At least that has been stopped.

The second part of the complaint was less certain, being open to being construed as a "personnel matter" (the person concerned was at the time a volunteer in PPI). That second part though is centrally important as not only does it involve it a gross injustice to that individual volunteer, it is about the basic right of any individual to bring to notice serious concerns about the misdoings of organisations. This right, called whistleblowing, is now recognised generally by public bodies having clear and open whistleblowing policies - at the time of the complaint CPPIH had no such policy - and employees have statutory rights in the Public Interest Disclosure Act 1998 - volunteers have no such rights under that Act.

This whole thing then is not about a petty mistake on the part of CPPIH. IT IS ABOUT DEMOCRACY. It is about the rights of the individual in relation to the state. It is about high constitutional principles that go back to Tom Paine.

The correspondence is set out in sequence on separate numbered custom pages: Omudstwist 1 - Ombudstwist 2 etc. I leave it to you to read it and draw your own conclusions. Your comments and opinions on this Blog would be valuable and much appreciated. I don't know if the nose is becoming hypersniffative but is there a faint whiff of Freemasonry here?


Dear Jo, (Jo Revill, The Observer)
Thanks for getting back to me. It really is great to have your interest and concern. I have been promised a meeting with the Commissioners concerned in our case 'easrly in the New Year'. I plan to take a (female) barrister friend. There are umpteen questions about accountability and transparency here. I have been collecting other cases, some worse than ours, and accumulating what I refer to as my "dirty dossier".

So how about this for a plan? If I get no progress during next week I will sort out my dossier and either arrange to check that out with you, or put you directly in touch with other victims. Some of them, plus a couple of other interested parties, are getting confidential copies of this message (I prefer to have specific permission before giving other names). As one of them pointed out recently CPPIH demand standards, such as Nolan Principles, of volunteers that they constantly flout themselves. One of my main fears is that someone will simply shuffle the pack and people of proven incompetence and economy with the truth, will finish up able to create further havoc.

Best wishes for 2006

London PPIF member.


Dear Barry Gardiner (MP), Thank you for the acknowledgement of my request. I look forward to a substantive reply.

One of the cases in the attachment I sent you on 22.9.05 had been referred to the Ombudsman. The Ombudsman wrote to the person concerned on 21.1.05;

“I have now received a reply from CPPIH and they have accepted that they got things wrong in your case. Following my enquiry they have reviewed the situation of Dr JM and have discovered that they had previously been given incorrect information and that the NHS trust for which she is a non-executive director does commission services from Waveney PCT therefore the doctor is prohibited from being a member of the Waveney PPI Forum. CPPIH have written to her advising that her resignation from the Forum is required if she wishes to continue as a non-executive director. CPPIH have also accepted that they sent you an inadequate response when they handled your complaint at stage two of their complaints procedure.

My view is that CPPIH behaved mal-administratively in respect of both the above and that this merits criticism from the Ombudsman. CPPIH should offer you a written apology and give you a full explanation of the action they have now taken regarding the matters you raised concerning the doctor’s membership of Waveney PPI Forum. I stress, however, that only certain managers within the Ombudsman’s Office are empowered to determine the outcome of complaints and my view regarding this has yet to be ratified by one of these managers. As soon as it has been a letter will be sent to your MP and copied to you and CPPIH.

As I explained to you on the telephone the other issue you raised concerning Mr JF is outside the legal jurisdiction of the Ombudsman and cannot be investigated because it relates to a personnel matter. Also, because it concerns another person you have not suffered any personal injustice as a result of it, however, I understand from speaking to Mr JF that he has submitted another complaint to the Ombudsman although I am not certain what the present status is of this.

It is clear that you were justified in the complaint you made and it is to the credit of CPPIH that they have so readily accepted they were wrong and have made no attempt to cover this up. I hope you are satisfied with the outcome.

Yours sincerely

John Donnelly

Associate Investigator

A subsequent letter from the Ombudsman’s Office has declined to proceed further as the issues concerned fall under “personnel” issues. This reinforces the feelings of myself and others that there is a lack of accountability in the way the Commission for Patient & Public Involvement in Health has been set up and the need for a major review of rights of volunteers to reasonable protection from capriciousness.

An ex PPIF member from London 29.12.05.


From a Mental Magazine contributor in N Ireland 02.01.06.
I don't understand why the Ombudsman's Office decided that they couldn't investigate your complaint after, rather than before, they investigated it (and resolved it in what at least to an outsider looks like a satisfactory way). Presumably the associate investigator got paid so it was hardly a cost-effective way to go
about things. What exactly is an associate investigator anyway? Maybe if I knew that it would explain everything.

I liked the bit where the associate investigator says it was good of the CPPIH not to attempt a cover-up. Why bother, when the Ombudsman will cover-up for them?

So what happens next? After all the CPPIH can hardly reinstate the doctor after they have admitted they were wrong.

I would have thought the personnel exclusion applied to employee cases which should go to employment tribunals rather than appointments complaints. Have you asked them to explain?


Dear Jo, (Jo Revill, The Observer) I think the lines may have got slightly crossed or confused. I thought that you were interested in addressing some of the issues involving CPPIH. 'Our case', i.e. the problems encountered by Xxxx Xxxxxx (formerly Chair of Xxxxxx PCT Forum), Xxxxxx Xxxx (Chair of the Xxxxx Xxxxx NHS Trust Forum, and me as the agreed representatives of all the Camden Forums. It all goes back well for over a year now.

Briefly we were unhappy with the support provided, complaints to the London Office did not resolve the problem, so we went to the Regional Manager. She requested a conciliation meeting which eventually took place on February 25th 2005, but was adversarial rather than conciliatory and included what we perceived as a threat of legal action by the FSO, CIDA, who have a history of litigation and been the subject of previous press reports in the Guardian. By their conduct that day the London Office clearly backed the FSO where their remit is to help Forums/Forum members, and audit the performance of the FSO. Separate but similar complaints against each us were raised by the FSO; they were undated and unsigned, but we later learned had been received by the London Office before the February 25th meeting.

We set out our position, with supporting data, to the CPPIH CEO Steven Lowden who eventually agreed to meet us. We have tapes and transcripts of those interviews which took place on May 20th. He concluded that the complaint from CIDA should be 'struck out' and promised a report into the conduct of the FSO and CPPIH London Office. The draft, written by another person, was riddled with error, and omitted matters of importance. We agreed and sent our amendments. No later draft was seen, but in early December a document called "Lessons Learnt" (sic) was sent to two Commissioners. We received copies. I asked a series of questions about the document, most of which have remained unanswered, and I requested a meeting with the Commissioners. I have had no contact since. There is much more that I will spare you now.

This is not the worst case: Mike Cox, Xxxxx Xxxxx and Xxxxxx Xxxxxx have all had appalling treatment, and I know of others not yet cleared for mention. It is quite evident that the standards of conduct in public life, the Nolan Principles, demanded of volunteer Forum members are not matched by the conduct of some employees of CPPIH and their agents in the Forum Support Organisations.

As you can see, I have copied to others mentioned above, with Bcc to others as yet maintaining confidentiality. Xxxx does not have email, so I will fax him.

For the time being I am suggesting that this matter is channelled through me though you are, of course more than welcome to contact them yourself.

As ever

A London PPIF member. 12.01.06.


Dear Mr Cox

Thank you for the update on this issue which we have noted. You may be interested to learn that the Government has now responded to the Committee's 10th Report which, in part, looked at the effectiveness of embedding an ethical culture in public bodies, including NDPBs - details of the response can be found on our website www.public-standards.gov.uk
. The Committee has also recently announced the subject of its 11th Inquiry - which will be a review of the Electoral Commissions - and hopes to publish an issues and questions paper very shortly -which will
also be put on our website.

Best wishes

Richard Jarvis
Assistant Secretary
Committee on Standards in Public Life
35 Great Smith Street
London SW1P 3BQ
Tel 0207-276-2597


E mail from an ex-chair of a Birmingham PPIF

Scowlden is a weird one really .. CPPIH really were a well designed mistake and the PPI's have had some sketchy but not really deep effect on making sure the NHS really does listen to the patient voice .


And an up to date debate about CPPIH recorded between 21.11.06. and 26.11.06:

I shall remember this, the next time I wait three weeks for my meagre expenses; and when I think how many of our members have failed to claim a penny in order to save money for the Commission in its straitened circumstances – ha!  Makes you proud to serve, doesn’t it......?
Robert Jones

From: Janet Albu [mailto:janetalbu@blueyonder.co.uk]
Sent: 23 November 2006 13:34
To: Mike Cox; Veronica Brinton; Vishy Harihara; Nick Green; Neil Woodrick; robertjones@ratville.freeserve.co.uk; Martin Rathfelder; Joocloo@aol.com; ALEX NUNES; Malcolm Alexander
Subject: Fw: From a reliable source.
So clearly it is in the public domain.
----- Original Message -----
From: Ruth Marsden
To: Janet Albu
Sent: Thursday, November 23, 2006 12:29 PM
Subject: Re: From a reliable source.
Hello Janet,
This info came from CPPIH Annual Report for last financial year ie 05-06. There were copies available at the APPG Meeting with Rosie W on 30th October.
I didn't collect one of these Annual Reports because I am so weary of glossy generalities from CPPIH, but very recently, (20th Oct 06), RW responded to a PQ by saying "There has been  no formal evaluation of PPI Fs. However, CPPIH produces a report (Annual Report, 2006) detailing their activities and acchievements".
So I thought I'd read the report to see what CPPIH had said about PPI Fs.
While I was looking through the CPPIH report, I came to all the financial stuff  (page 30 onwards), and the details that I extracted and e-mailed round.
It's all on the web for anyone to read.
I am no accountant, but the tiny proportion of the annual budget coming to Forum-members actually out and about in their work was conspicuous and stark stark. If more cash was available to Forums on the front line, they could publicise their presence better, be more accessible to their community and scope their work more effectively. The fact that despite being so starved of 'enabling monies', Forums do a decent and honest job is remarkable, and says everything about what terrific value for money we all give.
----- Original Message -----
From: Janet Albu
To: Mike Cox
Cc: Ruth Marsden
Sent: Thursday, November 23, 2006 11:48 AM
Subject: Re: From a reliable source.
My information came from Ruth Marsden. It is extremely unlikely that she will object, but I would prefer you to check first.  Only CPPIH would appoint someone resident in Scotland to be responsible for Southern England [as is Leslie Forsyth] so his travel exp's and hotel accommodation gets paid too. I brought the whole thing up at the exec of London Forums yesterday. Also I heard that rather than give up the disabled-hostile FSO premises currently in Islington, they are abandoning 163 Eversholt Street and several other offices! Also, the dates are already slipping to January 2008, so we are talking big bucks here. Incidentally, you and Ruth are both on my victims list
----- Original Message -----
From: Mike Cox
To: Janet Albu
Sent: Wednesday, November 22, 2006 5:56 PM
Subject: Re: From a reliable source.
Hello Janet.
Are you able to name the source? I'd like to pass this information to my constituency MP, Richard Bacon who is a member of the Public Accounts Committee and who did some good work exposing Government anomalies earlier this year (I must add here that I have no party political allegiance) but I know he'll only act (and that's quite reasonable) on validated information.
With your permission I'd also like to add the information to the PP Eyes website which I'm in the process of rebuilding.
On 21 Nov 2006, at 16:29, Janet Albu wrote:

This is an excerpt from a longer communication, and I felt that it might be of wider interest. Sharon Grant is a noticeable omission, but may be part of etc. Rents on fancy offices must cost quite a bit too. I am still cross that they refused to pay a £75 parking fine that this elderly disabled lady had to pay because they kept me waiting for hours and my sticker was not displayed sufficiently prominently. I believe that they did have some cuts to handle; but most of those seem to have been is support for us: for example the recruitment budget has gone and that is being left to us as volunteers. So what is Carole Reeves doing with the rest of her time?
"-CPPIH has had income this year of £33.5m and of this, the direct spend on patient and public involvement was a mere £18m, broken down as follows:
-FSOs £15m
-Forum-member development fund (whatever that is) £382,000
-CRB checking £80,000
-core-skills training £337,000
-forum member events, translation services and special needs £647,000
-forum-member expenses £822,000.
Salary of Steve Lowden  £105-110k p.a.
                David Orchard  £90-95k p.a.
                Leslie Forsyth   £90-95k p.a.
and so it goes on.
 CPPIH's Executive Team ( six people) have taken nearly £500k in salaries between them out of the kitty this year, yet all the Forum-members in the country have used only £822k of the Commission's budget."


I have yet to meet anyone who works for an FSO or CPPIH who has ever shown the least bit of interest in health at all, let alone patients and public, only in 'procedure' and hoping to catch one of us out for failing to abide by their 'rules'.   
I would love to know what the Chief Executive and other directors do in their time off....sorry, 'leave', - and how much they donate to charitable concerns from their salaries.....sums which I bet most Forum members couldn't even dream of earning.    And if ever there were 'jobs for the boys', this might illustrate it.    
But then, didn't we all know that the country is run not by elected members of parliament, but by civil servants appointed by other civil servants.....


You may be fortunate; they can be extremely dangerous when they do show an interest – and our FSO, unfortunately in some respects just replaced, would have to learn the rules before it could hope to enforce them. 
I also can’t forget that it wasn’t a civil servant who wished the CPPIH and its legions upon us, but a politician who, one wishes, had felt a much earlier urge to spend more time with his family.  Step forward, Alan Milburn – and perish.


Our FSO is good. I think you have particular problems in London and the South. I think we should concentrate our fire on CPPIH.  Ideally bumping it off to the original timetable but leaving Forums in place.  We could then use the money released from CPPIH to fund the nascent LINK organisations, the pilots for which will have no money.  I think HSJ may run this story.  So now is a good time to alert friendly MPs and local newspapers.


Hello Robert.

As a solid concept, PPI grew from the late 1990s. Off the top of my head, I think the Bill was introduced in Parliament in 2000/2001. Hansard makes interesting reading for the substantial debates around the Bill (National Health Service Reform and Health Care Professions Act, 2002). Milburn talks the good talk but the implementation was bungled by the short timelines for introduction and CPPIH incompetence and equivocality (typical New Labour practice). CPPIH with their top down civil service ignorant amateurism (users are the real experts) and arrogance continued to wreck what is fundamentally an invaluable concept for service user and carer involvement.

Martin is right, there now needs to be a concerted campaign to make sure LINKs are set up efficiently and effectively and that can't even begin while CPPIH remains in existence. 

I'm in the process of rebuilding PP Eyes with the focus on learning the lessons from the debacles CPPIH is responsible for and working towards positive LINKs. PP Eyes will still have all the original material in an archive section (including extracts from the above Hansard debates) plus my dossier of correspondence which evidences CPPIH incompetence in several areas.



You are right, of course: my memory is pretty good normally, but I had forgotten the earlier history.  I agree absolutely with everything you say below about CPPIH and New Labour – I worry about the detail; i.e. can this happen, can CPPIH be killed off or will it lurk around with us until the end of 07/early 08; will government consult it – in fact, it seems not to be, and I hope that impression is right; will LINks be any better founded, any more thought through, than the Forums were? 
Granted none of that is just going to happen if we do nothing, we do need to be doing something to pressurize the DoH, the question in my mind is what will that ‘something’ entail in practical terms?  I shall keep my eye on these links, it’s useful to be copied in to correspondence because we are fairly isolated down here by geography on the one hand and the very particular nature of our experience on the other, e.g. just one Trust, a district hospital serving a smaller than usual population with all the stresses that imposes, a coterminous unitary authority etc. 
I think I shall certainly submit my own evidence to the Select Committee – along the lines foreshadowed in this correspondence: some of our members are so fed up they don’t even want to think about the future, so I don’t know if there’ll be a collective response, but in any event will responding get us anywhere?  We sent in evidence back in 01 and 02, from the CHC – didn’t feel it was remarkably effective!  If it had been, the CPPIH would have been strangled at birth..... something I can’t help wishing had been done with various of its minions, but there we are, it’s dreadful the murderous rages to which dim-witted bureaucracy can lead....


Sad to say I think it is a lot simpler than this.
CPPIH broke the law by withholding budgets and resisting the direction of FSOs by Forum members.
These strictures are vital for us to set our own objectives and work independently.
Also, by law, they had to promote inter-forum working. Yet they withheld lists of contact details for members. There is no data Protection restriction of lists of members of voluntary bodies as they subsequently claimed.
I can only speculate why this was- and it's not nice.
But our powerlessness to act against them to compel them to act under the law I find the most appalling thing.
We've got nearly a year: surely someone knows a decent lawyer who would act for us pro bono. This would bring all this into the open and ensure that any new organisation could not act in this way- particularly its persecution of members who dared to question these deficiencies. I'm no lawyer but an injunction on CPPIH to apply the Statutory Instruments and allocate budgets next year for the final quarter might establish the principle.


Thanks Mike
I have had a copy of a letter from Chairs of all Bedforshire, and one of the reps from ours, PPIFs who went to some All Party Group meeting with La Winterton.  Seems Ms Winterton was reluctant to answer any of their questions and they have written to the only other MP (Patrick Hall) who bothered to attend the meeting.  To ask him to express the strength of feeling of PPIF members.
So, am not the only member of our PPIF trying to do some good. That makes 2 of us.
For your information, have attached my report of the Risk Managment Forum Meeting I attended.  My major concern is around the Crisis Beds issue and of course the Serious Untoward Incidents. Trust are blocking big time on this.  Need to regroup with self and look at more constructive way to get some answers.
Am listening to Kate Bush's Cloudbusting.  God that song fills my spirit.
Take care


I am fairly sure the Dept of health told them to act in this way.  To challenge them does not need a lawyer.  Thier accounts have to be audited.  If we think they are dealing unlawfully with the money then we raise it with the auditor.  Personally I think that is a waste of effort at this stage.  The important think in the future is that money and power should flow upwards not downwards


I agree with all this. - although bear in mind some of these problems are within the control of the FSO - our expenses, for example are paid very promptly and with no quibbling. And as far as I know there have been no expulsions of anyone in Manchester except people who just failed to show up.  And I don't think we have a problem with people's skills not being used.
Other issues raised with me about LINKs include how we ensure operational independence from Local authorities and how we ensure that voluntary organisations with financial fish to fry do not dominate LINKs.
Manchester is to be a pilot area for LINKs, so we have some opportunity to try and see what could be made to work in an urban area.  I would think that there are probably something like 500 organisations in Manchester with a reasonable claim to be interested in health, so if many of them are prepared to join we will need some sort of subcommittee structure.

Time for the "important" to realise they are not important any more now we have the web. Connecting for Health may "cost" £10 billion more? Cost of writing the software £5-10 million at most. This is plain corruption. On auditors the future is bright with real-time reporting (see http://www.cybsoc.org/index.htm#realt) but ***we must insist on it***. I gave a colleague this news. He said if you pose the question to any accountant, "What's two plus two?",  they will always reply, "What would you like it to be?"


Dear All,
Forigive the inclusive message, but I want to pull together some of the threads of recent messages and try to co-ordinate the common ground. There seems to be broad agreement on some fundamental points:
1. PPI, in whatever form, should be bottom up not top down. CPPIH and their agents seek to control us, rather than support us.
2. Certain members of CPPIH management are overpaid and should be dismissed pdq. Other costs need close inspection and justification.
3. The competence/experience of Forum members is under-exploited [there are n examples of this]; and we are patronised by certain members of CPPIH and their agents the FSOs.
4. Some of us can afford to wait long periods for expenses to be refunded, some cannot. The present process is discriminatory.
5. Some processes, for example the complants procedure, are used as a control mechanism and need to be revised to protect members. The processes appear to be in breach of common law.
6. Many valuable people have simply given up and voted with their feet.
7. CPPIH claim to hold exit interviews, but the only ones I have heard about use a questionnaire with the questions devised by guess who? These need to be independent and reflect local situations; Fora like Devon PCT and UCLHFTF face very different issues. Transfer is an underused option.
8. While using the various guidelines against us, CPPIH and their agents are seriously in breach of them. My own attempts to tackle this have led to referral from one agency to another until the circle is complete.
9. At the moment there is some reason to believe that the guidelines are being used to get rid of trouble makers. There is no redress.
10. The appointments policy needs inspection and revision. Of course mistakes are inevitable and bad fits may happen; but there should be a trial period and a transfer-without-blame policy.
11. We should push for active Forum members to become part of LINks automatically.
12. It is understood that in some areas things appear to work very well, perhaps we can all learn from them.
This is all a bit incoherent and I am sure that there are issues missed. Could you please circulate your thoughts, agreements, and disagreements? Also what benefits can we gain from this exercise?. My current view is that it should be raised with the DH, HCC, All Party Parliamentary Group and all local HSCs etc etc.
Best wishes to all

Looks like you've got it J. We can subsume most of these points in establishing the autonomy of the monitoring bodies which means we have the resources to protect ourselves and members from crazy bureaucrats, oh, and doctors!


Nick, have you forgotten that we looked at this some time back? Then we found that pro bono work was accepted only on an individual basis. One of the reasons for wider message is that I want us to grab an initiative and make it very clear that we want to represent ourselves, not have these people do it for us. When the time is right we will go piblick and psoobly use press contacts.


I did say that not everyone has had bad experiences! But I know of no one who is entirely happy with the way things are being run for us rather than by us. Your other points are well taken: some of us have concerns that LINks may have fewer powers than Fora, and the documents I have seen are woolly enough to allow rather different interpretations. What I want to do is to get our position known before people like CPPIH speak for us. Does anyone disagree?


I think it is possible to get over excited about statutory powers.  Political power is more significant.  When our CHC was at the height of its powers all the local Chief Executives came to all our meetings because our stories were regularly on the front page of the local paper and the reporter was to all intents and purposes a member.  They knew if they weren't there things might happen which they would not want.
Forums have very limited powers.  The powers over information are no better than those available to the general public using the Freedom of Information Act.
I cannot see how a service provider could refuse permission to a LINK to visit their premises if concerns had been raised in public.  Would they want stories in the papers about them hiding atrocities?
The political point is that statutory powers imply statutory controls. If LINKs are set up as voluntary bodies there will be no rules preventing them from doing things or permitting anyone other than themselves to discipline their members. Personally I think the costs of statutory powers outweigh the benefits, especially in an NHS where there is more choice and more market like arrangements.  If providers are financially vulnerable to bad stories coming out of a LINK they will be very eager to co-operate. And HMG are very keen to ensure public involvement on the commissioning side. 


I have to (unfortuneatley) disagree with Martin's key point re: Inspection. Inspection pulls the CEs and others, or has the capacity to (given the issues) to the meeting which then provides the transparency. Got to the website of the Birmingham Post today and see the main story re: the BCH and the closure of a kids psychiatric ward. The BEN PPI has initiated 5 inspections (the last being the meeting with parents which we arranged as the BCH would offer no assistance). They are now taking legal action against the BCH for failure to consult in closing the ward (there is a consultation programme obgoing already on this but it does not end until Dec 29).
In short, inspections are critcial to the success of the PPI in many respects as it offers the opportunity of transparency. And I don't agree on the limited powers either. Following a letter that Steve Lowden sent to the then OSC Chair, Cllr Nott of Bham CC in March 2004, this clearly stated that we could, at that stage, inspect social and private providers - which we've done!

This is a good discussion/debate/dialogue etc.    And of course the very thing CPPIH was afraid of, which is why they have never allowed us to have contact details of even regional forum members.   
What can possibly be more 'threatening' to governments/civil servants (mindful of their jobs/salaries/index linked pensions/reputations
within their own cosy clubs) than perceived power from the people?   It certainly isn't in their interests for us to have these country wide exchanges. 
I'm not an anarchist, but in these days of liberalspeak - transparency, accountability, these words are so devalued, and we have virtually no examples from  the 'top'  of someone saying "I got this wrong".    Endless spurious reasons and excuses - passing the buck is the norm.   
And don't forget, when one talks of the Department of Health making decisions, these are made by civil servants.    Of course there are good ones, and one rejoices to hear of the good examples, generally, or in our work for PPI.      (My son and my brother are civ.servs.by the way)     But what we do not have by and large is accountability from them.    One of you spoke to the National Audit Office and was told that indeed CPPIH should show us their books.     That was about a year ago, and it's been beyond blood out of stonesetc.    The only useful thing Ms Winterton seems to have done is give the basic figures of budget for the Commission a couple of months ago in answer to a question in parliament.... 
But, hey, thank goodness for the dedicated informed people that you are, and a credit to the public, of this country.


We need statutory powers; this doesn’t mean I disagree with the importance of political power, through publicity and contacts, but you do have to bear in mind that it is much easier to exercise political power in some areas than it is in others, i.e. areas of country, geographically, politically.  If we did not have the power to inspect, which we do not exercise excessively, we simply wouldn’t be taken seriously by the Trust with which we deal, because it wouldn’t have to.  And even if the Trust would take us seriously, the SHA wouldn’t!  It’s a struggle to deal with them as it is.  Let us not, please, throw away what we do have – the weakness does not lie with the forums but with the FSOs, in many cases, and the CPPIH in all.
The power to inspect is the only power we need, realistically, and doesn’t seem too much to ask for – if the LINks don’t have it, I shall know that they aren’t worth joining. 
Incidentally, I’ve dealt with the NAO in its role with housing associations – while I agree with Martin Rathfelder that we don’t want to get involved with legal challenges at this stage, I wouldn’t place a lot of reliance on the NAO as an alternative source of influence/power/discovery.  None of these bodies is anxious to challenge the status quo, because they are all afraid of and subject to government policy – which could dish them all in the end, through intrinsic ineptitude or deliberate malice ... it doesn’t make for a genuinely open society, nor is it intended to. I should far rather avoid that road altogether and concentrate on the immediate essentials..


The key issue is Patient Safety. No patient made a complaint if safety wasn't compromised. The Statutory Instruments guarantee Forum autonomy by providing budgets and members directing support staff. For all of us no budgets were provided. For many of us FSOs, supported by CPPIH, constantly put barriers in the way of proper responses. CPPIH saw itself as defensive of the status quo not enabling of proper reform of practices that result in 840 lethal accidents being reported by staff in NHS when 40,000 are estimated by an ex-president of the BMA who investigated Shipman. Half of death certificates are wrong- the patients were being treated for the wrong disease. Multiple blind diagnosis maybe the only way around that and prompt reporting of mistakes in treatment by staff. No training, based on statutory instruments, on risk reduction was given. Note superb training, by comparison, is given to Volunteers who inspect police cells to stop police mistreating their detainees. These are simply matters of law and risk minimisation by improving practice which Forums could have systematically monitored. There are no political issues here. If staff don't clean up their act, wash their hands etc, the blunt weapon of private outsourcing is the best DoH can come up with mainly because, although improper, it is a potential source of further income outside NHS for them. Chaos keeps the private sector alive. Personally I put my faith in improved IT with outcomes recorded for anonymised statistical analysis. In the States the Veteran's Administration's Hospitals  were a little bit of the dirty, chaotic NHS in the US. They improved their IT and are now up with Mayo Clinic and Johns Hopkins for quality.


I am not against inspecting - all I mean is that if we insist on statutory powers of inspection than we are in a statutory regime which may bring controls which we would not want. And I can't see how the BCH could, politically, have refused an inspection from anyone if the Birmingham Post were going to run a story about it.  But as other people have commented the politics of this may be different in rural areas.   However we could get inspection powers by administrative provision rather than statutory power - a Dept of health circular is in the NHS just as effective as a statutory instrument
More important perhaps is the question of legal privilege for meetings.  The reason the Post would carry a story is that it cannot be sued for reporting something said with privilege in a meeting.   Although it is almost impossible for an NHS body to sue for defamation it is possible for individual members of staff to sue if they are rich enough. 
We need to ensure that LINKs are treated as privileged under the Defamation Act 1996
According to Words and Phrases Legally Defined, qualified privilege means:
On grounds of public policy the law affords protection on certain occasions to a person acting in good faith and without any improper motive who makes a statement about another person which is in fact untrue and defamatory. Such occasions are called occasions of qualified privilege. As a general rule, there must be a common and corresponding duty or interest between the person who makes the communication and the person who receives it.


Surely, the key question is not about power per se, but about how effectively we can use power to influence decision making in the NHS. We are not involved to get an article in the local rag, but because we want real influence in decision making in the best interests of patients. Nick's focus on patient safety is a good one in my view. If a Trust has got a big problem with patient safety e.g. Northwick Park where there were large number of deaths of babies, they will simply deny access and information to a body with no powers of access and rights to information - information is not just about getting answers to questions, but have real access to documentation and the people who have got the information you want. This is because their legal advisers will advise them not to take the risk of allowing voluntary sector bodies to scrutinise their services too closely. A body with statutory rights of access and statutory rights of veto will not only get in the door but will also participate in decision making at a very high level and will have real influence on patient safety and patient care. As an example I wrote to Northwick Park as a member of the public three times to get information about the deaths and they would not even reply. I know how to enforce the FOI but most citizens and small vol. groups do not.
In the case that Martin presents the Chief Executive were there because the statutory body of lay people also had political power - a unique and highly successful model. Statutory bodies can go to court and force other statutory bodies to do things they might not want to do. Martin proves the case for statutory powers without meaning to.
If the government if offering pathetic bodies called Links, its because they believe we do not have the political power to say no. The government does not want powerful Patients Forums because their power would interfere with the market in health care. It wants weak bodies called Links because they are nice window dressing for Labour Party conferences and for propaganda at the next election. And of course because they have no power.
In my view if we want to get bodies that achieve the best results for patients we have to first ask how we can be most powerful as bodies of patients and the public in exercising real influence over health policy, local decisions about heath services and national policy on the NHS. Structures will follow from that.
Have a good day all.
All the best. Malcolm


I don't agree with Malcolm.  But let us go with his argument for a bit.
So what sort of statutory powers would we want?
I don't really recognise the powerful Patient Forums which Malcolm is talking about.  What makes them powerful - or if they aren't powerful now, what would make them powerful|?
The main power of the CHC was to refer a proposed change to the Secretary of State.  I never thought this had much teeth, because as far as any big development went the Sec of State was already behind it.  There didn't seem to be anything to stop the Sec of State replying by next post to say he had considered what the CHC said but things were going ahead anyway.  I understand LINKs would have the power to refer to the scrutiny committee.  Is that better, or worse?
As far as information goes do we want more than the Freedom of Information Act provides - and if so what?


A couple of quick examples: The closure of Dulwich Hospital in South London was prevented by a referral to the secretary of state. Its still there and redeveloping services as a community hospital. Numerous clinics in South London were similary 'saved' by the threat of a referral to the Secretary of State. In practice, in my view, this is real power in the hands of the community. Malcolm


Power lies in a combination of statutory authority, which legitimizes forums in the eyes of Trusts and makes them consult, plus the knowledge that a forum can refer matters to the Oversight and Scrutiny Committee of the local council, which in turn is reported by the press.  It may not be much of a power, but is probably as good a lever as we can apply.  I wouldn’t be looking for MORE powers than the forums have, but guarantees that the present powers would be transferred to LINks, if these ever do actually come about.
The ability to exercise the power is the important thing, and it is there that, thanks to CPPIH largely, and regional/local weaknesses in FSOs, we have problems with the present system.  We are in effect policed more rigorously than we can police the system we are supposed to be scrutinizing; this need not be the case, and was not with CHCs (whatever their other weaknesses).
Can contribute but fitfully to this debate, thanks to a flare-up of the arthritis in my neck making typing difficult, but keep it up, it is interesting! 

Robert,  I go along with all that you say, except that you would not want more power. Surely, when we are confronting the power of the state we need to be as powerful as possible, providing we do not usurp the democratic process. Malcolm


I have a bit of a problem using the power of the state to challenge the state: there’s an uncomfortable circularity about that – but the point is that I want the power that the forums have, theoretically greater than those exercised by the CHCs except that CPPIH circumscribed us & prevented us using it, to be transferred to/granted to LINks.  However, I wouldn’t actively resist more powers – I just think the struggle at the moment is to prevent LINks being impotent talking shops, crippled (I can use that word I think, being one!) by an over-complicated structure and supported by an inadequate administrative/managerial layer.  Or in other words, please let us not repeat the Forums’ experience, which has been 3 years of frustrated achievement – i.e. there HAVE been achievements, but reaching them has been blue murder at just about every step because Nanny has been groping for our hand ... this is no less than offensive when you have former senior civil servants and chief executives of major charities on the forum who know more than the CPPIH staff were aware existed.
Oh, and did I mention budgets...... so useful to know what money you’ve actually got to spend on the work – and it was like extracting blood from a stone to find out.  No: I can’t live through another dose of ignorant, arrogant, complacent, patronizing bureaucracy: and that’s what I want to avoid more than anything else.  We HAD the power, in other words, in the legislation: but having it didn’t actually strengthen our hand except insofar as we ignored the CPPIH and shrugged off the FSO’s feeble attempts at guidance. 
So I hope we can unite around a) the necessity to think through the shape that LINks will take, and insist the DoH doesn’t present us with another dog’s breakfast, b) the importance of retaining those powers the Forums had (plus more if you like, but I wouldn’t fight over that at this stage), c) avoiding conflicts of interest with Las, d) having the ability to actually use the powers we are granted.  I agree with Martin Rathfelder that we need a national organization to prevent CPPIH presenting itself as representative of forums – even though I think a lot of work is needed to convince all forums/members of the point of that; but you have to start somewhere, so let’s have a bash....

I think Malcolm is wrong about where power lies.CHCs had power, when they did (and many of them had none) because they were confident, experienced  and capable.  Their actual statutory powers were feeble, but were sufficient to give members the sense that they had some power.  When they used that confidence they developed real political power. Hazel Blears built her career in Salford CHC.  What makes Forums generally weaker is the fact that most forums have less then 10 members, many of the members are inexperienced, the staff of the FSOs are often even less experienced and the staff of CPPIH are nervous about letting them do anything.
LINKs potentially are quite large and could draw in some serious political operators.  The Manchester LINK could have 500 members including various quite large organisations..  We need to ensure that there are no mechanisms to prevent them developing into powerful bodies. That is why I am wary of going down the road of setting them up by statute (which is what the Government intend to do). There are plenty of people in the Dept of Health who really don't want to see an effective powerful local patients voice, let alone a national one.