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."

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