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 (www.cppih.org
) 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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