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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.

Regards.

Mike. 25.01.05.

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171
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.

Regards.

Mike Cox. 01.02.05.

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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

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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.

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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.

Regards.

Mike.

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175
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.

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to Rosie Winterton 09.02.05.

CPPIH MISLEAD MINISTER

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.

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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.

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178
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.

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179

17th February, 2005.

Regional Customer Services Officer,
CPPIH,
East of England Region,
Ground Floor Block 7,
The Westbrook Centre,
Milton Road,
Cambridge,
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.

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180
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.

Regards.

Mike Cox, 19.02.05.

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181
“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.

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182
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.

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183
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?

Regards.

Mike Cox. 05.03.05.

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184
Dear Mr Cox

Thanks - I shall find out.

Meredith

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

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185

8th March, 2005.

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