Patient and Public Involvement in Health

The proposal to scrap Community Health Councils (CHCs) and replace them with patients' panels within Trusts and official patients' advocates was simply anti-democratic. Patients' panels were unlikely to be able to achieve many of the recommendations of the Hutton Commission. See Guardian 13 September 2000.

For all CHCs' weaknesses and lack of mandate, they were not entirely dependent on Government patronage, and were an alternative voice to the otherwise all-powerful Department of Health. See Guardian leader, March 30, 2000 and a summary of other press comments. This move was comparable to a previous Government abolishing the Greater London Council. Democracy needs to exist at all levels of community, but the most powerful and least accountable level, currently the ministers in Westminster are easily tempted to marginalise other levels, both local and international.

In Parliament the abolition of Community Health Councils was mitigated by the establishment of Patients' Councils, which in theory should have broader powers.

The Health and Social Care Act 2001 initially preserved Community Health Councils, because the Government had to make concessions to get the Bill through the House of Lords before the General Election. The Government  announced that it still planned to legislate to scrap Community Health Councils.

The National Health Service Reform and Health Care Professions Act 2002 provided for the abolition of CHCs in England, but not in Wales.  The Government  consulted on arrangements to replace them with Patients' Forums and with scrutiny by local authorities (mainly county councils).  The proposals were modified after consultation and sought to draw on the expertise of CHC members and staff, and to strengthen patient advocacy and complaints services.  Crucially staff working to support patients with grievances and the wider community would not be employed by NHS Trusts but would be employed by the national body co-ordinating patient representation.  See our response in December 2001.  In practice the forum support organisations and independent complaints advocacy services are provided under contract by not-for-profit organisations.

CHCs continued to function in theory until December 2003.  As the previous closure date of 1 September was only revised in June, they were ineffective in their last few months.

The Government proposed that Patients' Forums would not have any role in relation to Foundation Trusts.  This was subsequently changed.

Early in 2004 I joined the Patient and Public Involvement Forum working with Rugby Primary Care Trust, and my husband, Geoffrey Porter-Williams, joined the forum for University Hospitals Coventry and Warwickshire.  We meet quite often with six other forums (eight in total) for the Coventry and Warwickshire area.

The national framework has been chaotic.  The Commission for Patient and Public Involvement in Health (CPPIH) was set up with a very wide role, combining appointment of forum members, training, contracting with forum support organisations, spreading information, and representing the views of forums.  Some of these functions, such as the representative, would be better forum-led.  Others, such as performance management of forum support organisations, distracted forums from their work plan on an administrative chore of no interest.  We kept our distance from the Commission after a disastrous "Meet the Commission" event where the main matters of discussion were the rate of car mileage allowance and other minor financial matters.

Some of the early decisions were bad.  Applicants for forum membership were not asked to allow publication of their contact details.  So for data protection reasons it is not possible for patients to contact forum members without going through forum support organisations, and postings on the Knowledge Management System computer system are anonymous.  The first identity cards were not supplied for many months after forums were formed.  The need for criminal record checks for forum members who were to make inspections among vulnerable people was not anticipated.  Before many months the pending abolition of CPPIH was announced, allegedly on financial grounds.  Ministers without consultation produced badly thought through proposals for the future administration and reorganisation of forums.  Subsequently the proposals were put on hold and CPPIH was given a one year stay of execution.  So many staff have left that CPPIH seems to be doing little except appointing and renewing members.

See http://nosenears.modblog.com/ for a critique of the Commission for Patient and Public Involvement in Health for unaccountable actions.

The forum members are not democratically elected.  It is possible to have democratic institutions without election.  For example, to the extent that juries are appointed at random they are part of a democratic system.  But for long term appointments the absence of election takes away any formal accountability to the patients and communities that it is forums' purpose to represent.

Most forums are short of members.  Members are largely self-selected, appointed after a screening process, and sometimes removed for inappropriate reasons unconnected with their effectiveness (see  article on Freedom to Care website).  Initially CPPIH set out to attract a diverse membership, but by now the membership is predominantly white, middle class, middle aged to elderly.  Forums have tried to connect with other groups, but do not always sustain or develop the links, and this has reduced the diversity of the membership.  Some recruitment is by word of mouth within a narrow social circle. 

Disproportionate numbers of forum members are retired NHS staff.  Their knowledge can be an advantage, and they can have an interest as patients as much as anyone else.  But the effectiveness of forums dominated by retired NHS staff is diminished, when they are wary of offending former colleagues and disinclined to challenge them, and at worst share attitudes and prejudices with staff rather than look at issues from the viewpoint of patients or carers.  Dominance by NHS insiders builds up when the forum uses jargon without explanation and assumes detailed knowledge among forum members, leading to members without specialised knowledge feeling unwelcome and drifting away.  Even forums that are not dominated by retired NHS staff will need to make more effort to retain members, especially in their first year of membership.

How can forum members be made more accountable to their communities?  The ideal is democratic elections, but there are two qualifications to this. 

• Our policy is for democratically elected bodies directing local health services and appointing board members to hospitals etc.  Any more than one election for the NHS in any area would be too confusing.
• For scrutiny of the NHS local authorities already have health overview and scrutiny committees, which provide the scrutiny by representative democracy.  Forums as separate bodies can only be justified if they function differently.  This would include a different way of involving their communities.

Forums' distinct role relies on their including people with experience as patients or carers or having close links to service users.  They also have the advantage of not being party political.  Forums should not be too close to the management or staff, but equally they should not be committed to policies of the government of the day or of national opposition parties. 

Perhaps each forum should have affiliated bodies representing service users or carers and nominating forum members.  In many ways, this would be reinventing community health councils, which were not notably successful, possibly because too many of their members did not see themselves individually as representatives, confined their involvement to little more than attending meetings (often being very busy people with other roles such as councillors) and may have been too close to or too like NHS insiders.  So affiliated bodies should be encouraged to nominate people with sufficient time for forum activities and to expect them to report back on the forum's activities and on their own part in the forum's work.  The selection of affiliated bodies should reflect the diversity of the community in all aspects.

Membership of affiliated bodies would be likely to exclude patients and carers  whose experience, while common to significant parts of the community, are not covered by an established organisation.  So there should be some individual forum members not representing affiliated organisations, but to ensure accountability they should be a minority.  Selection of individual members should aim to diversify the membership to include interests and experiences not otherwise represented.

Forum members' names and contact details should be published on lists in libraries and at doctors' surgeries, clinics and hospitals and on the Internet. Anybody unwilling to be accessible in this way should not become a forum member.

Any further suggestions on making forum members effective and accountable would be welcome.

In consideration of the future of forums, research on the operation of Community Health Councils is relevant.  See a 1988 paper by Ann Burge, who found that other CHCs were more effective than the Rugby CHC on which she served.

From Keep our NHS Public email dated 29 June 2007

Have you been consulted?

Before local NHS bodies can make decisions that affect the provision of care there is meant to be consultation of the local population. Richard Stein from Leigh Day & Co solicitors, who represented Pam Smith in the judicial review of United Health's takeover of a GP surgery in Derbyshire, has produced a document setting out how to challenge cuts and closures on which local people have not been consulted. The duty to consult is set out in Section 11 of the Health and Social Care Act 2001. Department of Health guidance states that: "Section 11 places a wider duty to involve and consult patients and the public: not just when major change is proposed, but in the ongoing planning of services; not just when considering a proposal but in developing that proposal; and in decisions that may affect the operations of services" (Strengthening Accountability - Involving Patients & the Public). Has your local PCT or SHA consulted properly about the reforms in your area? If you suspect that  there hasn't been a full and thorough consultation then contact us for advice and a copy of Richard Stein's document.

In Bristol campaigners have argued that consultation about an independent sector treatment centre has been insufficient. They are currently pursuing a legal challenge, and we shall keep you updated with developments in future newsletters.

Campaigners in West Sussex, meanwhile, have had their consultation delayed by nearly a year and are still awaiting the options for consultation. The Support St Richards Campaign are keen to learn if  they are alone in a delay, or whether other areas have been similarly affected. Please let both us and the Support St Richards Campaign know what your experience of the consultation process has been (Support St Richards Campaign email - abigail.rowe@rws-tr.nhs.uk).

Read Section 11 at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4008005