Last update 6st. February 2007


LINKs PPI Meeting at Central Hall

1. Those of you interested in the election of a national committee for patient forums will be unsurprised to discover that the election for which we have been waiting for the last year or so has been postponed by CPPIH for a further fortnight to enable candidates to supply a nicer photograph of themselves.

2. We in Manchester are an early adopter site for LINKs. I would be very keen to hear from any other patient forum members in early adopter sites. The adoption process looks to me as if it will be as lengthy and bureaucratic and expensive and pointless as other CPPIH enterprises. Perhaps Forum members might be able to speed it up if we work together.

3. Members of the Local Government and Public Involvement in Health Committee Bill Committee: - These are people to cultivate, particularly for people who live in their constituencies

Blackman-Woods, Dr Roberta (City of Durham)
Brake, Tom (Carshalton and Wallington)
Brown, Lyn (West Ham)
Burrowes, Mr David (Enfield, Southgate)
Burt, Alistair (North East Bedfordshire)
Dunne, Mr Philip (Ludlow)
Fabricant, Michael (Lichfield)
Gwynne, Andrew (Denton and Reddish)
Hall, Patrick (Bedford)
Levitt, Tom (High Peak)
Neill, Robert (Bromley & Chislehurst)
Pugh, Dr John (Southport)
Seabeck, Alison (Plymouth, Devonport)
Shaw, Jonathan (Chatham and Aylesford)
Smith, Angela E. (Basildon)
Soulsby, Sir Peter (Leicester South)
Stunell, Andrew (Hazel Grove)
Syms, Mr Robert (Poole)
Turner, Mr Neil (Wigan)
Waltho, Lynda (Stourbridge)
Woolas, Mr Phil (Oldham East and Saddleworth)

4, Below is an account of the meeting of the All Party Parliamentary Group on PPI, Westminster, 30th Jan '07

These notes were taken by Ruth Marsden from Hull PPIF to whom many thanks are due.

1. Richard Taylor : Bill has no details re funds, functions and form of LINks. Conditions are attached to access. Consultation over "significant" change -what is "significant"?

Standing Committee is chance for amendments. Report stage possible chance for amendments. Lords is another chance for amendments. It was the Lords who secured PPI Fs. Select Committee proceeding in parallel. Not how it should be. Select Committee supposed to scrutinise potential bills.

2. Kevin Barron:. Come to listen to you. Had discussion with PPI Fs in S Yorks. Select Comm. should publish evidence this week.

Bill not that descriptive. Two judicial reviews of healthcare in last 12 months: we don't want NHS shaped by the courts and lawyers.

We have not closed minds on any of this that Richard spoke of. Standing Committee here to find a way forward, clear up what's been "a bit of a mess".

3. Mike -we are all volunteers, done bloody good job. How can LINks involve so many to any effect? Time to stand up and make count all the good work that Forums have done.

4. Bob -Don't want talking shops. Currently have meaningful Trust/Forum relationships, thanks to active individuals. Trusts, OSCs and HCC want Forums to go on.

5. Pat -We've worked and trained. Fear loss of autonomy. L.a.s already overloaded. This Bill has been rushed through with scant regard for us.

6. Great Yarmouth -If KB says this is a "bit of a mess", why make it worse. Public won't get involved in a 'mess'. Forums are local, not subservient to anyone, serve the patients. MPs should remember they are there due to a cross on the ballot paper. Witness Dr R Taylor!

RT responds. We are on your side, the three of us. Tribute to you. Forums really work.

SG Need some co-ordination re LINks. National voice? A few 'bad' Forums have been used to rubbish the lot? I have sympathy with this view. You might not think much of CPPIH but we defend to the death your rights etc.

7. Michael English -Time allowed for Bill is too brief. Where is the evidence? All voluntary organisations have a financial interest. These will inevitably conflict.

8. Southwark -Where is the accountability? A Forum monitors an organisation so that organisation is accountable to it. LINks are too arms-length. Inspection is vital, not just for itself, but because if information is poor or opaque, we can go and inspect and find out what's going on.

9. Malcolm, London Ambulance -What's the object of all this? Looks as if the Bill is meant to make an ineffective system. Why are you so keen to go ahead and not compromise? LINks look like a weak body doing nothing. If a LINk was meant to have real power, it would be made powerful, not just part of a Bill that says "allow access". Ambulance Trust covers huge area, how can LINks get to grips?

10. Ian, N Yks -Should be a clear timetable for the Bill. Any change shouldn't be before April 08 and any system sorted with the assistance of the Forums.

Meredith Vivian. responds. I won't waste your time telling you our ideas are right. The referral power for LINks is explicit for social care. Regulations already exist for referral etc for health sector. Word 'inspection' not used as we do not think of LINks as' inspectors', but 'informed people' rather than an inspectorate. This is not a diminution of current powers of Forums.

The word "significant" is used re changes, as to date, there is no threshold for a 'change', it could be buying a different broom. (!!!!) "Significant" change could be a negative impact on only one person.

There is nothing in this Bill which is 'less' than PPIFs have, and there is some that is 'more'. Eg LA. has to say how it will respond.

11 -St Helens/Runcorn -Volunteers have given time and talent because they want to make a difference. This is vital. Money suggested for a LINk (150k) is not enough. Why abolish Forums?

12-Mary, Swindon -We trained etc and it cost a lot of money. We are non-political organisations .

13 -Jim, Herefordshire - CPPIH is just at the stage when it could do something useful at last and it is chopped. OSCs, PCTs are worried, as well as Forums.

14 - Cambridgeshire -OSCs, what about their training, they serve a term and then are off. Where's the continuity?

15 -Martin, Manchester -We are an early-adopter site. We see the difficulties. Existing forum members should be appointed to LINks directly through this legislation. Without real independence, all this is pointless. Local authorities have political views. A LINk and the council may well disagree. LA can remove host's contract if host is not representing the community properly, so could remove its contract for other reasons too!. Host's staff are vulnerable to this dissent. Their jobs depend on keeping the contract with the LA. Money for LINks should be stated and published within each LA. The disabled and disadvantaged need high budget to support. One deaf person, needing adequate support, could need 400 per day. We are volunteers, so does the DDA apply?

MV responds. Why abolish Forums? It's complicated. Health and social care are coming together, CPPIH is going, blah, blah.

16 -Trevor, NE Ambulance -Very large area, millions of people, little detail in Bill , concern over what is in it, as well as what isn't in it. All can be scrapped at the stroke of a pen, liquidated. Independence is vital.

17 -Ray, Mid Yorks -What's "significant"? Will a third party have to define and decide?

18 Wirral -All this about loads of members, it takes 2 to 3 months under current recruitment for anyone expressing an interest to hear anything. Applicants wait ages to hear from Regional Office. What about support? The current FSO situation is a shambles. We want no repeat of this. What about the "it takes up 2 hours a week" rubbish?

19 Audrey -Our area is very, very large. We have patients from Carlisle, Wales and the Isle of Man. We cope by focussing on the Trust.

20 -Ex-magistrate -This is a model guaranteed to build up conflict. It is not evidence based. What's wrong with having money ring-fenced? Call it 'virement'.

21 -Pat, Tyneside -LINks will smash the valuable relationships Forums have built up with Trusts. PALS are creatures of the system and ICAS has drowned and HCC complaints are stacking up. We need to evolve the current model, not scrap it.

22 Len, Surrey -We need the Parliamentarians to turn all this around. The little detail, the lack of detail can be used to advantage if the right things are added in. Forums must be the centre of any network. We already do this networking, but are short of resources. The Bill needs a strong centre for any LINks. We need rights as of law. We need better branding, 'LINks' says nothing to anyone. LINks won't be a statutory body and l.a.s are just going to say, "We don't deal with volunteers"

23 Eva, Oxford -Ours is a small Trust but a very specialised one and takes local, national and international patients. We are embedded with the Trust, on all key committees. Trust doesn't want our Forum abolished, it's asking us to stay on. Without Forums, the whole thing will be just a talking shop.

24 Gordon, Northamptonshire. -Look at us here, lots of us, eloquent, literate, hard working. We represent our patch. We have a social and community conscience. We are your most valuable resource, in that we cost you nothing but maintenance. Don't waste us.

If Rosie Winterton thinks that the HCC can do the inspections on its own, why is it that it misses so much that we find? If it's so good, why does it miss things?

Are there thousands wanting to be in LINks? If so, why didn't they join Forums? There's no evidence of all these thousands dying to get in on the act.

25 Borders -We are not coterminous, have two LA.s wanting to be three. One votes with the government, the other always opposes, this is not effective management.

Patients come from across the border from Scotland as we are nearest. Does the D of H even know what goes on?

26 Dan, Essex, Mental health -A single LINk cannot possibly cope. Seriously worried. Mental health has been the Cinderella too long. Be wary of the organisation which hosts. People on the ground are frustrated that the work of Forums is being diminished. This feeling is very widespread.

26. Jean, E Yorks -'Consultation' as far as I have seen from PCTs is 'decide and issue'. They don't budge. Takes months and costs thousands.

PALS is only an advisory agency dealing with car-parking and late appointments etc. I am a lay conciliator and deal with post PALS and ICAS issues before they get to HCC. The government doesn't know whom it's got in us, should audit its Forum-members and see our qualifications, experience, skills, expertise, track record.

27 Andrea -As Patricia Hewitt admitted she'd plundered the training budget for medics to try and balance the books, we can have little confidence that LA.s wouldn't plunder LINks monies.

28 Swindon -Some LA.s are vast, I doubt you can recruit. If you do, how will you manage the numbers you speak of? To my mind, and from my experience, 'small is beautiful'. Small is what works.

29 Ruth, Hull -What about the specialist Trusts that are commissioned from wide area and would be subject to several LINks?

The Minister cites the "changing landscape of NHS provision" as reason to change PPI Fs but we already have dual-role members who link with providers and work across, and Forums already have, and have always had, the right to go to any provider where NHS patients are treated. There's a very long list of other groups and agencies whom we involve. Where in this Bill is the explicit right to 'enter' the private sector establishments that already try to hide behind 'commercial confidentiality'? 'Enter and view' makes us mere spectators.

Sharon Grant responds. Refreshing to hear all this face to face. Strength and passion shows. Can't have a hiatus in transition. Must have something that works. Resources are a real issue. When Forums started, it was three months before we had any budget details. Ridiculous to aspire to a system of thousands without a budget. Involving in diversity, properly, does not come cheap. Current ppi is tiny part of the NHS budget. This is a test of the system of Parliament itself. We need evidence-based thinking.

Meredith Vivian responds. I shall write to you all, F members and the MPs here, with answers to all the issues you have raised. I will make clear what is, and what is not, in the Bill. We are not 'doing away with you' but making the best use of resources.

KB responds. There's very little 'evidence-based' decision making in the D of H. All this interaction between PALS, ICAS HCC, we shall be testing it out. It will be clearer in a couple of months.

RT responds. This is the most useful afternoon I have spent for a long time. The frustration comes across. The lack of detail in the Bill could be an opportunity. You need independence, ring-fenced money, arrangements for specialist trusts, and national voice: details are needed here.

PH = Patrick Hall, SG = Sharon Grant, RT= Richard Taylor, KB= Kevin Barron, MV= Meredith Vivian

Ruth Marsden, 30th Jan '07

Other issues for our forums:

In the light of discussions at our conference some of the issues which arise directly out of the Bill might be:

How to protect the independence of the LINK from potential Local Authority pressure

To make all existing members of Patient Forums members of the LINK for the area where they live

To establish that anti discrimination legislation should apply to LINKs

To provide that the sum allocated for the running of each LINK should be published

To establish that support contracts should normally last for five years and any change should be agreed by the LINK, and not just by the local authority

To provide that every member of a LINK must reside in the area of the LINK and that any person with a financial interest of any kind in the provision of health or social care services must declare it and withdraw from any meeting where they have a financial interest in the matters discussed

To ensure that every LINK should have access (on confidential terms if necessary) to the detailed terms of any contract for the provision of health and care services to people in its area

To ensure that local LINKs (or possibly some designated committee of a LINK operating on a confidential basis) has access to information about complaints which is sufficiently detailed to enable LINKs to know which specific services give rise to complaints.

To establish the right of access by a LINK to the meetings of any committee or body which makes decisions affecting health or social care in its area.

Martin Rathfelder
Vice Chair Manchester PPIF
22 Blair Road
M16 8NS
0161 286 1926