Memorandum by the Commission for Patient
and Public Involvement in Health (WP 71)
INTRODUCTION
1. The Commission for Patient and Public
Involvement in Health (CPPIH) welcomes the Committee's inquiry
into the Government's Public Health White Paper and the opportunity
to present evidence.
2. CPPIH is a Non-Departmental Public Body
established in January 2003 through primary legislation to ensure
the public is involved in decision making about health and health
services and to report to Government on the effectiveness of the
PPI system. CPPIH has a specific remit enshrined in legislation
to support the engagement of marginalised communities.
3. The Commission has established 572 Patient
and Public Involvement Forums, one for each PCT, NHS Trust and
NHS Foundation Trust in the country. Forums consist of around
5,000 volunteers nationally and have now been in operation for
just over one year.
4. There are 68 Forum Support Organisations
from the voluntary and community sectors working under contract
to the Commission providing direct local support to Forums and
strengthening the opportunities for community engagement through
their expertise and community knowledge.
5. CPPIH supported the engagement of Forum
members in the Choosing Health Consultation by running 25 workshops
across England in which 835 members participated. A response (annex
1) [Not printed] was submitted to the Department of Health
on behalf of Forums. This response was perhaps unique because
it directly reflected the views of patients and the public through
the Forums, demonstrating very real and independent patient and
public involvement. A substantial number of members responded
directly to the Department of Health.
6. This memorandum reflects:
— The extent to which the White Paper
does or does not accord with the views expressed by Forum members;
— The views of the Commission on the
patient and public involvement issues relevant to the White Paper.
WILL THE
PROPOSALS ENABLE
THE GOVERNMENT
TO ACHIEVE
ITS PUBLIC
HEALTH GOALS?
7. Health as a public good
The responses of Forum members indicate that
there is a widely held view and level of understanding that improvement
in public health can only be maximised by a fundamental commitment
to health as a collective public good. Supporting healthy choices
through individual decision making is clearly an essential component
of the strategy. However, we are concerned that the White Paper
relies too heavily on a consumerist model of health with its emphasis
on individual decision making and fails to propose measures to
support growth in infrastructure necessary for collective community
action. Collective community action is a means through which significant
additional health gain can be achieved, particularly amongst those
social groups currently experiencing the poorest health outcomes.
We would suggest that the White Paper proposals are reviewed to
reconsider the interventions necessary to support this development.
8. Sustainable community engagement
Patient and public involvement in its widest
sense is a valuable component in an effective strategy for health
improvement. Bodies ranging from those supporting community development
(such as the Community Development Foundation) to international
agencies (such as the World Health Organisation) have put forward
the evidence base to show that involvement in one's own community
and decisions about important aspects of one's life and social
context, is health enhancing in its own right and improves health
outcomes. The Commission perceives an absence in the White Paper
of evidence of a coherent approach and genuine cross government
commitment to mobilising the power of local communities. Effective
cross Government action to support and resource active citizenship
is the means through which sustainable improvements to health
could be realised beyond the short lived improvements achieved
by time limited interventions.
The Wanless report "Securing Good Health
for the Whole Population" highlighted the importance of this
issue. "The importance of public engagement is incorporated
into the Review's three scenarios . . . The core difference between
the health outcomes in the fully engaged and solid progress scenarios
is not the way in which the service responds over the next 20
years, but the way in which the public and patients do . . ."
We are concerned that the action proposed will not maximise sustainable
patient and public engagement and therefore will not maximise
the possible long term gain in public health outcomes.
9. Disadvantage and Health
Forum Members indicated in their response the
importance of placing sufficient emphasis on the link between
income and health. The Prime Minister's Strategy Unit paper on
"Life Chances and Social Mobility" which reviews the
latest evidence concludes that "there has been no narrowing
of differences in life expectancy by social class over the last
thirty years". Income is an indicator of social disadvantage.
The White Paper does not adequately address the impact of disadvantage,
and particularly multiple disadvantage on the capacity of individuals
to pursue positive health choices. There is significant evidence
of the impact of multiple disadvantage on individual behaviour.
For many people living with disadvantage there are additional
costs associated with making healthy choices. This compounds the
challenges they face in pursuing health promoting behaviours.
The pursuit of health improvement based on a strategy of individual
choice has the potential to widen inequalities.
10. Information Appropriate to Need
The white paper suggests that information and
advice is tailored to meet people's needs. Members would wish
to highlight the specialist needs of some individuals such as
the sensory, physically and mentally impaired for whom there are
substantial barriers to access to information and to opportunities
for healthy lifestyle activities appropriate to personal needs
and preferences. This important aspect receives only a passing
mention and there are no specific proposals for action.
ARE THE
PROPOSALS APPROPRIATE,
WILL THEY
BE EFFECTIVE
AND DO
THEY REPRESENT
VALUE FOR
MONEY?
11. Intervention by Government
There is much in the White Paper that accords
with the views expressed by Forum members. However, as a general
point the Committee might be interested to note that the extent
to which members felt that Government should act to control and
restrict unhealthy activities or options was greater than the
scope and extent of the controls proposed, particularly in the
areas of food and smoking. Members identified a variety of fiscal
measures that they felt would be effective and supported such
as tax on unhealthy foods and the advertising of such foods and
subsidies on healthy foods.
12. Neglect of the role of collective action
in health improvement
In our view the proposals will not maximise
health gain as they fail to adequately support active citizenship
and collective action by local communities as we set out in section
8 of this memorandum.
13. Addressing disadvantage
In our view the proposals will not maximise
health gain as they fail to sufficiently address the impact of
social disadvantage on health choices as we set out in section
9 of this memorandum.
14. Assessing the effectiveness of implementation
The Department of Health document "Standards
for Better Health" contains Public Health as one of the seven
domains against which the Healthcare Commission will evaluate
progress. Neither the core standards nor the developmental standards
contain explicit reference to community engagement. We feel that
this is a potential omission that will hinder assessment of the
effectiveness of implementation.
DO THE
NECESSARY PUBLIC
HEALTH INFRASTRUCURE
AND MECHANISMS
EXIST?
15. A role for Forums
The Patient and Public Involvement Forums (PPIFs)
established in 2003 by CPPIH offer the only comprehensive mechanism
for community engagement in health.
In support of Forum members CPPIH has initiated
a programme of work to support Forums to engage with the issues
and action set out in the White Paper. There is significant scope
for Forums to make a worthwhile contribution to implementation
of the White Paper, not least through sharing knowledge with local
populations as a step towards improving health and transferring
knowledge from communities to decision-makers. There is scope
for action in partnership with other stakeholders to bring a unique
contribution to this work to highlight issues, to stimulate local
debate and discussion on public health issues and through this,
enable sustainable engagement with other local stakeholders and
communities.
The Commission has always interpreted its founding
legislation, and that establishing the Forums as embracing this
wider view of the role of Forums. The Board of CPPIH have championed
the idea of a wider "Our Health" infrastructure that
allows wider public involvement in a national PPI infrastructure
and a pool of "local voices". This concept was explored
by the Office of Public Management and the Nuffield Trust and
a paper was submitted to the Wanless Consultation. The proposals
were rejected by the Department of Health.
As the Committee will be aware the Commission
will be abolished in 2006 as a result of the review of Department
of Health Arms Length Bodies. The Department of Health is currently
considering the future role of Forums and how they should be supported.
It is important in our view that the Forums retain a remit for
addressing issues of public health. Our experience has been that
the Department of Health prefer to emphasise the Forums' role
in monitoring and reviewing the NHS.
We would also like to highlight the importance
of retaining a strong, independent local, regional and national
voice for Forums. It is our view that they will not be effective
in making an impact on decision making about public health without
a "voice" at a national level. This is part of the role
of CPPIH. It appears that the Government has no plans to replace
this function.
16. Skills and Capacity for Community Engagement
We are pleased to see in the White Paper recognition
of the need for workforce skills and capacity development in the
sphere of community engagement. However, the scale and pace of
the proposed action is a cause of concern given how crucial this
is to the success of the strategy overall. In establishing CPPIH
and its PPI forums, the Commission found a serious shortage of
such skills, and has invested heavily in building capacity across
the country in this area. We urge that this capacity is built
upon to meet the demands of the emerging public health agenda,
and is not discarded in the current reforms.
CONCLUSION
17. CPPIH wishes to highlight to the Committee
the following:
— The heavy emphasis on a consumerist
model of health in the White Paper and concern that the proposals
do not support growth in infrastructure necessary for collective
community action, through which significant additional health
gain can be achieved, particularly amongst those social groups
currently experiencing the poorest health outcomes.
— The need to review cross government
action required to promote, support and resource active citizenship
and approaches to community governance to underpin the achievement
of public health goals.
— The White Paper does not in our view
adequately address the impact of disadvantage, and particularly
multiple disadvantage on the capacity of individuals to pursue
positive health choices. The pursuit of health improvement based
on a strategy of individual choice has the potential to widen
inequalities.
— The importance of ensuring that there
is action to tailor information, advice and healthy lifestyle
activities to meet specialist needs of individuals such as the
sensory, physically and mentally impaired.
— Neither the core standards nor the
developmental standards by which the performance of the NHS in
respect of public health will be assessed contain explicit reference
to community engagement.
— The importance of strong independent
Forums who have a voice in health decision-making at local, regional
and national level.
— The unique contribution that Forums
could make to action to improve public health and the need to
retain their remit to secure engagement in public health issues,
as well as service monitoring.
— The need to enhance the scale and
pace of proposed action to address workforce skills and capacity
development in the sphere of community engagement.
January 2005
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