Select Committee on Health Written Evidence

132. Evidence submitted by Jean Lewis (PPI 23)

What is the purpose of patient and public involvement?

  1.  By and large service users, as taxpayers have a right and a civic responsibility to be actively involved in the NHS though it should be noted that they have little interest in the shaping of health policy, delivery and audit unless they have been adversely affected by service provision.

  2.  The government sponsored ideology of patient and public involvement in health has yet to cross the chasm which exists between long established medical paternalism and the mythical future of a "Patient Led NHS". In this new world NHS professionals will truly value the involvement of patients and the public and use them at all levels of decision making not simply to endorse previously agreed decisions as happened in the recent consultation process preceding the reconfiguration of PCTs.

What form of PPI is desirable, practical and offers good value for money?

  3.  Some impressive evidence exists concerning the work of PPI groups. This can be found in the Patient and Public Involvement Forum's Annual Report 2005-06 National Summary ( ) However what is not in evidence is the extent to which value for money audit of patient led innovations will be undertaken. Academic research studies into existing PPI achievements are urgently required to contribute to the question of the purpose of PPI.

  4.  The Annual Accounts for the Commission for Patient and Public Involvement in Health can be found in the CPPIH Annual Review The Facts and Figures 2005-06 and shows that £31.314 million was spent on supporting PPI activity. To understand the purpose of PPI it is not enough to show how much has been spent in supporting it but what has been the health gains for the public arising from this very substantial expenditure.

Membership and appointments

  5.  A major problem arises when attempting to define a service user. Every member of the public is likely to be a user of the NHS or is likely to become a user in the future. Therefore which members of the public and which patients should be asked to represent the views and opinions of all other service users? Should we settle for those members of the public who nominate themselves? Reasons for self nomination arise from self agrandisement, boredom, failure in other walks of life eg relationships or career, to those who wish to defame the NHS because of a perceived failure of service delivery and of course there are those with deep conviction and a real will to shape health and social care. A careful selection process is essential, undertaken by experienced and consistent teams of accountable individuals using a process which demonstrates local democracy. Appointed LINKs members should understand and agree to public accountability. The purpose of PPI in the future LINKs organisation should be critically analysed and made explicit before attempting to recruit members of the public who not not fully understand the purpose.

  6.  The issue of democratic deficit is evident at NHS Board membership level where NHS Board members are un accountable to their local communities. At the very least effective LINKs could ensure that Boards become accountable to the public via Annual Reports etc.

  7.  Direct democratic control can be seen to work in other public services such as Local Authorities, since service users and members of the public can remove those in authority if they are not satisfied with service provision. Within the context of LINKs it is vital that the fundamental differences in democratic control between Local Authorities and NHS Trust Boards is properly recognised. Service users who become members of LINKs will need to be politically aware of the fundamental democratic differences between the NHS and Local Authorities.

  8.  Without careful selection by an independent body then a dictatorship of the uninformed may project themselves forward as LINKs members, thereby undermining the purpose of patient and public involvement.

  9.  The purpose of a new type of patient and public involvement in the NHS should be defined by close scrutiny of the existing statutory form of PPI. Strengths and weaknesses should be distilled to ensure that future health and social care services are not influenced by vociferous minorities with single policy issues. To date a satisfactory formula has failed to materialise to ensure the right kind of balanced, participatory PPI democracy.

  10.  Any future PPI system should take note of the extent to which committed and caring members of the public are left feeling undervalued by the PPI process. Professionals are well rewarded for their attendance at meetings etc whilst PPI members are asked to attend for nothing (except for travel costs etc). Please note the discrepancies existing when lay assessors participate in the Quality Outcomes Framework system (QOF). GPs who participate in the QOF process are very well rewarded for their time whist financial reward for lay assessors is sporadic across the country, varying by PCT.

  11.  At professional meetings PPI reps are usually out numbered by professionals who often use secret/exclusive, professional jargon to effectively exclude PPI members. Professional who attend meetings are often intent upon driving home vested interests for there particular department and have no time to spend on lengthy periods of consultation with members of the public who they do not consider as equals.

  12.  The future effectiveness of PPI will depend upon a willingness by NHS professionals to attend education and training events to familiarise themselves with the purpose of PPI. They should not seek merely to legitimise their plans by demonstrating that they have consulted with patient groups.

  13.  Before actively recruiting to a future PPI structure, research is urgently required to identify the many and varied forms of PPI that already exist since there is a real danger of reaching saturation point where so many diverse groups are asked for their opinion. Very little consensus is achievable when disparate groups are asked for their opinion. The gain for the NHS is that the process demonstrates that the public has been consulted though the variety of responses means that little notice needs to be taken.

  14.  A new, statutory form of PPI should be clearly rebranded as something which is radically different to the small, often press-ganged, GP adoring groups set up to act as the PPI voice for GP's thereby enabling them to achieve more points in their annual QOF process.

  15.  Future PPI members must feel more valued than in the present system. To become more valued they should be more carefully selected, with more public accountability. PPI should be in evidence in all key decision making activities in the new NHS. In particular GP,s should be actively involved in defining PPI member attributes. When GPs' collectively reach a point where they say they are comfortable with PPI then LINKs will have succeeded where PPI is deemed to have failed.

National Coordination

  16.  With the impending demise of CPPIH who will represent LINKs members at national level? Who will provide training and set up opportunities for national networking events? Who will fund these activities?

Jean Lewis

Notttinghamshire County Teaching PCT PPI Forum (comments are made as an individual)

23 November 2006

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