The SHA event – Growing from the Roots: Patient and public involvement after CPPIH (the Commission for Patient and Public involvement in Health) – was held in London on Friday 3 December 2004. A significant number of members of local PPI Forums were present and the quality of the debate and discussion was high.

The event was chaired by Martin Rathfelder, Development Director of the SHA and the speakers were Christine Hogg, formerly of the Department of Health’s Transition Advisory Board Advisory Board, Caroline Powell of Picker Institute Europe, Elizabeth Wincott, Chair of the Long Term Medical Conditions Alliance, Malcolm Alexander of the London Ambulance Service PPI Forum, Sally Brearley of Health Link and Hilary Barnard, Chair of the Camden PCT PPI Forum.

Where are We Now?

Christine Hogg, who facilitated the Department of Health’s Transition Advisory Board that considered arrangements around the abolition of community health councils, gave an overview of the present situation and the consultation currently being run by the Department on the future arrangements for patient and public involvement in health when the Commission for Patient & Public Involvement in Health (CPPIH) is abolished. Important matters to be considered included:

Accountability

To whom will the members and staff of the PPI Forums (which are to continue after abolition) be accountable and who will set the standards for and monitor their conduct?

Staffing

  • Participants felt that the current Forum Support Organisation model of staff resourcing was not working and has been little short of disastrous in some cases. The three-year contract model is a nonsense, and there needs to be a better fit with the rest of the voluntary sector.
  • The Forum staff have not felt engaged with the work of the Forums and have no relationship with and little knowledge of the NHS.
  • In future, PPI Forums should be involved in interviewing and selecting their staff.

Budgets and resources

Forum members should not have day-to-day control of their budgets, since that would be a major distraction, but they should have control over priority setting and expenditure.

PPI Forums working together.

  • Staff support is essential to enable PPI Forums to liaise and work together on matters of common interest and concern.
  • The need (or otherwise) for a national organisation of PPI Forums and also regional bodies and regional offices must be considered.

Appointments

  • Appointment and governance in future will be the responsibility of the Appointments Commission. This suggestion has not been popular, but it is unlikely to be negotiable.
  • Questions were raised about the logistics of recruiting and selecting Forum members. These would be ongoing tasks and the sheer numbers of people to be seen would be immense. It is unlikely that the Appointments Commission could deliver this at local level and it would probably have to purchase the service from appropriate local providers.
  • The suggestion in the government’s review that the Appointments Commission should also be responsible for appraisal of chairs, members and staff would be another logistical nightmare.
  • Governance and observance of the Nolan Principles should be the responsibility of the Appointments Commission, but again is fraught with difficulty.

National level

The government is proposing to establish a PPI Centre of Excellence at national level to share good practice, standards, training and appraisal.

A national organisation for PPI Forums

A national organisation for PPI Forums is essential, but it must be one that is bottom up, strong and properly funded and resourced funded by the Department of Health. It could even commission the PPI Centre of Excellence but the PPI Forums themselves must own it.

The consultation runs to 20 January 2005.

What do patients want?

The Picker Institute Europe runs the Patients’ Survey – Through the Patient’s Eyes – and Caroline Powell gave an outline of the findings from the surveys.

The surveys show that patients want:

  • To have confidence in NHS staff.
  • To have clear, understandable explanations and the opportunity for dialogue.
  • To be given information about medication – especially about side effects since 20% patients get no information about these.
  • To be involved in decisions about their care (35% want more involvement).
  • More information about why they are waiting and what they are waiting for. The length of waiting times was less important to them.

·On Choice:

  • 25% said they had been offered choice.
  • 16% were not offered choice but would have liked it.
  • 54% did not want choice.

Choice

Where choice was offered, half took it up. A hospital’s reputation and speed of treatment are the most important issues governing choice. The source of this information is mainly GPs and there was concern that GPs may not have the time for this when Choice is rolled out.

The survey

  • Younger women are more likely to respond.
  • Older people respond more positively (perhaps because they have lower expectations, or more recollection of life before the NHS?).
  • British Asians report less favourable treatment.
  • The coverage of PCT surveys in particular is not good.

The Picker Institute is making representations to the Healthcare Commission about the poor coverage of PCT patient surveys although there will be no change by next year.

(One participant commented that, in Wales, Choice means take it or leave it!)

The data

The data from the patient surveys are on the Healthcare Commission website. These can be accessed by going to “performance ratings” and selecting the particular trust, which are listed in alphabetical order. Unfortunately, the information is provided in bar charts so it is not very accessible. It needs interpretation and narrative. Also, patients may not necessary know the formal name of their trust.

All trusts have been asked to make this information publicly available, for example, through PALS, trust newsletters or local CVS newsletters. The Picker Institute recommends that the information should sit with the trust PPI lead. The Picker Institute advises trusts on how to obtain views and information from the groups that the survey does not reach in order to provide a wider picture.

Elizabeth Wincott

Elizabeth Wincott is the (relatively) new chair of the Long Term Medical Conditions Alliance (LMCA). She said that the Alliance was established in 1989 and it also encompasses mental health conditions. It is an alliance of long-term illness charities, representing over 115 organisations.

The LMCA has adopted the model of lay-led self-management programmes of Stanford University and this model is now government policy. The LMCA has made positive criticisms of the Expert Patient Programme and wants it to be truly lay-led. The LMCA can only represent issues raised by the patient and carer members of Alliance members. It also reports on government policies and life issues affecting people with long term conditions to its membership. It is currently considering whether to drop the term Medical from its name.

Some 17 million people in England have long-term conditions. For them, patient and public involvement means the full involvement of those affected, their families and their carers, not just through committees and consultations. There is a need to guard against “token” involvement and the Wanless engaged scenario is essential to the development of high quality patient-centred care.

The National Consumer Council has just set up a Public Service Users’ Forum, using the concept of health literacy. The LMCA felt that CPPIH did not take account of existing user involvement structures and it was saddened by the loss of community health councils.

Any shift in the balance of power from providers to service users must be a real shift. The successor bodies to CPPIH must be more influenced by service users and less by academics. Patients, families and carers must also be at the heart of the debate on the establishment of the PPI Centre of Excellence.

Questions, comments and debate at the end of the morning session

  • Is there a conflict between patients and the public? Every member of the public may become a patient at some time.
  • Trust CEOs often use “tokenism” as an excuse not to have any lay input or representation, so it is better to go for tokenism if this is the only alternative.
  • Lay representatives will need proper support structures behind them to ensure that they are empowered.
  • There is a difference between the patient perspective and patient representation.
  • The way trust boards operate must be changed if lay representation is to work. Lay representatives will have to be trained and empowered.
  • The Healthcare Commission model of “spot checks” on foundation trusts is flawed. It gives one month’s notice of a check, which enables CEOs to invite in “tame” patients.
  • Any PPI structures set up should relate not just to PPI Forums but the whole spectrum of bodies that represent users, including the voluntary sector, patient panels, lay representatives on Nursing Councils, should all be included in any national organisation.
  • The PPI Centre of Excellence is an anachronistic term – will it be staffed by the former CPPIH staff, how and by whom will it be performance managed, how will it use information technology? It could be run as a “virtual” centre that offers much wider access that just a building staffed by bureaucrats.
  • Where a patient representative comes from a single issue organisation, the representative often cannot focus beyond the single issue, but a good chair should ensure that not too many single interest issues are raised.
  • A number of lay representatives on clinical governance committees can have more influence than one representative on the board. Patient representatives should be at every level.
  • People in full time jobs cannot participate effectively because meetings are usually held during working hours for the convenience of trust staff.
  • It has proved very difficult to get a good age, ethnicity and gender mix amongst representatives, even amongst trust NEDs.
  • Training is needed in “how to be an effective token” and how to support “tokens”.
  • The Department could look at how many schools accommodate their governors, for example, through early morning, early evening and lunchtime meetings. School governors are more likely to be younger and in work. The NHS must adapt to this model.

AFTERNOON SESSION

Malcolm Alexander, formerly director of the Association of CHCs of England and Wales (ACHCEW) and now chair of the London Ambulance Service PPI Forum, believed that the issues centred around power and bureaucracy

Participation

Access to participation is made too complex because the professionals don’t really want to hear the lay the user view. There needs to be a larger number of people actively involved to achieve change. There is a place for tokenism, but it must be expanded.

CPPIH has failed to provide any sense of a national movement, unlike ACHCEW, which was constantly receiving communications from all over the country. A proper national movement is essential. There has been no information about where, or whether, CPPIH is making representations to government on health care policies. The potential is there but it does not appear to have been used.

Human contact is also important. Technological and electronic contacts can only go so far.

What are we trying to achieve?

All the government’s written communications about patient and public involvement are excellent but they are not being translated into action, despite the fact that the PPI movement has been developing over more than 30 years.

Priorities

  • There is no information about how the government determines priorities, nor whether this happens with the benefit of PPI input.
  • Policies are determined by the “evidence base” and are determined before they go out to consultation, not afterwards.
  • Where is the evidence, for example from PCTs, of local policy development influencing national policies?
  • What is needed is for lay people to develop a national movement to influence government priorities for health at national level.

Questions, comments and debate on this session

  • How do the PPI Forums relate to the Independent Complaints & Advocacy Service (ICAS)? At the moment there is no involvement or connection. ICAS is, however, sending information about complaints to government. ICAS cannot share data because of patient confidentiality but it can send anonymised information to PPI Forums and arrange meetings with them. In Sussex, the local ICAS shared information with the PPI Forums, but now trends need to affect more than five people before ICAS can share the information.
  • People should get together in their local organisations to enable local users, patients and citizens’ councils for health – but they need resources. What about using regeneration models? The Section 11 (Health & Social Care Act 2001) statutory powers can be used to establish bottom up organisations.
  • Professionals often say that users don’t know what they are talking about because they are only citizens. This culture needs to be changed.
  • There is a belief that the CPPIH is censoring some of the postings put up by PPI Forum members on the KMS.
  • There must be cross-Forum working and this should develop nationally.
  • National Service Framework co-ordinators should be asked to arrange local meetings with more than just one patient representative.
  • Trust public relations information about their PPI arrangements can be excellent but their practice of PPI often fails completely to match it.
  • Information exchange is real power, but how can it be achieved? In Wales the information can be taken directly to the Assembly. CHC members in Wales seem to be very close to the health ministers and are encouraged to participate. England needs to learn from this.
  • The PPI Forum NED role on trust boards has been abandoned by government, despite it being in the legislation, because of the potential conflicts of interest.
  • The “usual suspects”, who turn up at meetings to the distress of health organisations, are vilified because they know what they are talking about.

The need for regional and national PPIF organisations.

Sally Brearley, of Health Link and a local PPI Forum member, said that Health Link is a not-for-profit organisation that bears no relationship to the former London Health Link except that it involves many of the same people doing the same things!

She questioned the absence of any comment from CPPIH during today’s debate about the current state of the NHS and contrasted this the last national Casualty Watch by ACHCEW, when its Director was on national TV and its Vice Chair on local radio across the country.

She had not come to praise community health councils, but to bury them – they are dead. If the current system is moving back to the CHC style this is not because of the influence of former CHC people but because PPI Forum members want to create something that is effective. To do this, they are learning from the past.

The need is for something that is effective for patients, the public and the NHS – the NHS, which we all want to retain and improve. Support for the NHS is essential and this is currently not out there.

The need is for the pillars of the triangle of:

  • Influence
  • Knowledge
  • Legitimacy, including accountability

CPPIH does not have these three essential pillars.

  • Trust CEOs also believe that national and regional PPI Forum organisations can help to improve trust delivery of service to patients.
  • Who commissions services? PCTs in the main, so the national and regional organisations will need relationships with them.
  • The case of the Ravenscourt Park Hospital that the local PCT cannot use because of funding constraints also highlights the need for a London regional organisation of PPI Forums to organise and comment on London-wide issues such as this one.
  • Specialist commissioning, such as for HIV services, is done on a regional and national basis and is not being monitored by any PPI Forums.
  • The NHS the public gets is still largely determined by politicians. For example, the first wave of foundation trusts is currently under review by the Healthcare Commission. This was a sop to get it past back bench opposition at the legislative stage. The Healthcare Commission itself says this is not the right time to review foundation trusts as they are not yet fully up and running; and the Commission’s remit is very narrow – it cannot comment on policy, only on issues specific to local health economies.
  • Specialised services need a regional voice – and PPI Forums need this mechanism to represent patient interests.
  • · Knowledge is also a big issue. Obtaining, collating and co-ordinating local, regional and national information from all the PPI Forums is very difficult and requires knowledge and training in how to use this knowledge to create influence.
  • Legitimacy is key. Even if CPPIH had joined today’s debate, would the spokesperson really have been able to say what patients think and need?
  • What is the CPPIH Forum Working Group that has sent information to the Appointments Commission?
  • The need a “national organisation of PPI Forums” is here now, not in the future; along with regional organisations, and all should be responding to the current consultation. However, it is not possible to dictate this as the solution, since it would circumvent PPI Forum input; do PPI Forums want this solution, will they sign up to it, fund it (perhaps by top slicing), own it, determine the functions and run the organisations? National and regional organisations are needed as quickly as possible, buy they must be set up democratically.

Hilary Barnard

Hilary Barnard is the chair of the Camden PCT PPI Forum and is an organisation consultant working in the areas of care, learning disability and mental health. He spoke of his perceptions and experiences as a PPI Forum member and stressed that the intervening pre- and post-CPPIH period must be well managed.

  • In his view, the PPI Forums’ honest experience of CPPIH was of a failed organisation – politically through lack of impact; the shortcomings of the KMS system; the obsession with secrecy; some arrangements with some FSOs – the London experience has been particularly bad, except with one FSO.
  • CPPIH’s approach not truly to report the patients’ voice; its inability to come to terms with closure and failure; and its claim of bogus achievements, such as the 29 days to appoint PPI Forum members.
  • The Department of Health will not give PPI Forums true independence. But there must be a bottom up development of legitimate regional and national organisations. The PPI Forums are a very different animal from community health councils.
  • User voices are nevertheless fighting through the system to be heard.
  • How to involve young people? Sixth forms, for example, are very interested in public health issues but have a sense of being disempowered and unheard. This interest and involvement should be a part of good citizenship.
  • How can London PPIFs come together? This is currently a very active debate. PPI Forums don’t want to recreate the CHC experience but they do share concerns and a recent London-based consultation paper picked up on some of these issues. At a meeting of 44 London Forums on 2 November a huge consensus emerged on the need for a London organisation. CPPIH paid for the facilitator of this event. The London PPIF working group is going out to consultation on the need for a London-wide body.

Other matters that came from that meeting are the need for PPI Forums to have control over, but not day-to-day management of, their budgets; the recruitment of PPI Forum members; the renewal of FSO contracts – many of which are not working well; how to move from a range of different regional structures to establish a national network organisation that reflects, represents and respects the diversity of PPI Forums – the bottom up development of a regional and national PPI Forum movement.

Questions and discussion on the final session

Some questions were posed but not necessarily answered:

  • Should the new CPPIH be bottom up, with PPI Forum control over budgets and staffing? Everyone present agreed with this and also with the need for more resources
  • Are there too many PPI Forums – should some be amalgamated and if so, what would be the criteria for amalgamation?
  • How would the members of a national organisation be s/elected?
  • Do all trusts need a PPI Forum?
  • Should there just be PCT PPI Forums?
  • Should PPI Forums be organised by NHS function?
  • What about specialist providers?
  • Will PPI Forum reduction take place naturally, as PCTs merge?
  • Should PPI Forums be attached to the OSC, with the local authority employing the PPIF staff?
  • Should PPI Forums be co-located with local authorities?
  • Should PPI Forums and OSCs share the same staff?

Other comments

  • All new PPI Forum members are to be criminal checked, which means that it will take even longer to recruit members.
  • If the number of PPI Forums is reduced, so will the number of PPI Forum members. There will then be fewer people available to do the monitoring and the Forums will become even less effective than they are now.
  • Larger PCT PPI Forums should include mental health and ambulance issues and there should be PPI Forums for specialist trusts such as Moorfields Eye Hospital and the Royal Marsden.
  • PPI Forum relationships with OSCs need clarifying. There should be a clearer definition of what OSCs do, what PPI Forums do and how they can complement each other’s work.
  • How representative are the members of trust boards and committees, for example, the GP member or the nurse member? They are not “representative” but this is not seen as an issue for them, unlike the “representatives” of the patients.
  • The fiasco of the abolition of CHCs may have concentrated the minds of MPs and they may be more amenable to listening to informed representations about the succession to CPPIH. It will take primary legislation to abolish CPPIH, which will not be possible until at least 2006, but the government will implement as much as possible before the legislation is enacted.

Although it was recognised that much of the debate was just recreating the debate that took place when CHCs were abolished, it was noted that this event is the first time there has been a serious debate about the consultation over the replacement of CPPIH.

Next Steps

The PPI Forums could set up a national body themselves if they agreed, in advance of the legislation, or an association, or a network. Will this be a membership organisation whose members are in contact with each other and with a common agenda? The momentum for a national body must develop, along with steps to obtain funding, like New Deal and regeneration events.

There will be a short report from today inviting views of PPI Forums about the principle of some sort of national organisation, an election network and the establishment of a group to take things forward. The Department of Health and CPPIH will do nothing themselves to set up a national body.

An event early next year is essential. Today’s event will be viewed as just a gathering of a small clique, so a wider event is needed. There must be some groundwork to identify the amount of support and perhaps a two-page application to the Department of Health for around £3000 to fund the event.

The CPPIH abolition legislation will also include regulations for PPI Forums and will be going in draft to solicitors in April or May. This must be influenced in advance and PPI Forum members must be vigilant in ensuring that existing rights are not removed.

Which? has commissioned some research into PPI Forums and Forum Support Organisations to fill in the Department of Health consultation gaps. Is Which? able to access PPI Forums directly?

Any new national body must not be yet another self perpetuating obstructive bureaucracy – it must be an organisation that, in future, is able to give informed comment whenever the CEO of the NHS reports on the state of the NHS.

PPI Forums will ask CPPIH to fund the national event given that the London event was funded by the London CPPIH. They should also ask for regional meetings, perhaps before the national event, on a one place per PPI Forum basis. The event is a legitimate activity for public service volunteers.

A list of PPI Forums that want a national event to consider the case for national body should go to ask CPPIH to plan, fund and arrange the event. If this does not happen, then a national event can be run independently. PPI Forums want a collective voice in the current consultation, it should not be just up to individuals to comment in isolation.

Statement agreed by the conference:

1. Whatever organisation succeeds CPPIH should be organised from the bottom up. Any national or regional organisation shall be accountable to forums, not the other way around. Forums should have control over their own budget and resources. Decision making at all levels must be transparent.

2. The present consultation run by Opinion Leader Research neglects a number of important issues which need to be decided.

3. Forums need a national organisation to be established as soon as possible so that they may meet and collectively have a voice in their own future organisation. In the longer term it is important for a national organisation to be established which is democratic and accountable and can speak for patients. A national association has much to contribute to supporting an effective National Health Service to all communities in the UK and to good healthcare service delivery at local level.

4. Among the issues which need to be considered in future are the relationship between PPIFs and Overview and Scrutiny Committees. Forums should develop a partnership approach to their work involving other organisations with an interest in health. Forums should be encouraged to work together and with Scrutiny committees.

5. Any centre of excellence which is established could be directed by and accountable to the proposed National Association of Forums.

6. We have grave doubts as to whether the NHS Appointments Commission is a suitable organisation, as it presently operates, to recruit members to forums who are sufficiently diverse to reflect the populations they serve. It is crucial for Forums to be representative of a diversity of people from different backgrounds, particularly under-represented groups. Forums should be enabled to assist in recruitment in order to tackle this problem effectively.

7. We request CPPIH or the Department of Health to fund a national conference to which all PPIFs are invited to send delegates without delay. If CPPIH is not prepared to do this we propose to organise one ourselves. This conference shall consider these issues together with any other matters pertaining to the future organisation of Forums and patient representation in the NHS. The event should belong to Forums from the start. The event needs to be organised in a transparent way, which reflects and respects diverse experience coming together to create a national body.


Background documents:

PPI Forums need to take the initiative

London Ambulance Service PPIF – has some of Christine Hogg’s briefing papers among other things.

Patient and Public Involvement Forum Organisation

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