20. Evidence submitted by Community Investors
(PPI 128)
1. EXECUTIVE
SUMMARY
1.1 Community Investors' evidence is drawn
from our individual and collective experience of playing an intermediate
agency role in supporting local people, service users and groups
to engage with a range of attempts by local and national government
and health bodies to achieve patient and/or public involvement
in health and social services and other decision-making, including
regeneration. Community Investors has acted as a Forum Support
Organisation to PPI Forums in North London since inception in
December 2003 under contract to the Commission for Patient &
Public Involvement in Health.
1.2 It is clear to us from our experience
that:
— Effective patient and public involvement
increases the likelihood that decision-making in health and social
care will benefit users and communities
— Terms of reference for decision-making
in health and social care should be developed to foster equity
and trust among stakeholders
— Effective PPI requires independent
PPI bodies and PPI support organisations, free from the conflicts
of interest of providing health or social care services
— Those potentially most affected by
proposed changes in the NHS should have their views and interests
demonstrably taken into account before decisions are finalised
— Repeated changes in patient and public
involvement structures absorb scant resources which could otherwise
be used in improving patient care and public well-being, and if
not evidently necessary can undermine trust and demoralise those
involved, including staff in NHS and social services.
2. BRIEF INTRODUCTION
2.1 Community Investors is a strategic development
agency established in 2001. We believe that local people,
with their intimate knowledge of the needs of their communities,
have a critical part to play if there is to be effective and sustained
economic, social and environmental transformation. We work as
far as possible at a strategic level; many of our activities are
innovative and involve networking, support to others, acting as
a third sector interface between government and community and
making recommendations on policy and standards.
2.2 Community Investors has a diverse staff
team with backgrounds in a variety of fields, including local
government, the voluntary sector (including intermediary agencies)
and social enterprise, largely within areas of high deprivation.
Research is a critical part of our work and includes managing
or undertaking studies of issues which matter to communities,
producing briefings and discussion papers and helping to bridge
the gap between academic researchers and local people.
2.3 Our evidence draws on our work in the
field of user and public engagement and on our collective experience
over many years, and addresses the following questions:
— What is the purpose of patient and
public involvement?
— What form of patient and public involvement
is desirable, practical and offers good value for money?
— Why are existing systems for patient
and public involvement being reformed after only 3 years?
— In what circumstances should wider
public consultation (including under Section 11 of the Health
and Social Care Act 2001) be carried out and what form should
this take?
3. THE PURPOSE
OF PATIENT
AND PUBLIC
INVOLVEMENT
3.1 Patient and public involvement (PPI)
should ideally reflect partnership working to improve care and
wellbeing. This should in turn help to foster a climate of greater
equity and trust among stakeholders where the interests of and
feedback from patients and/or public (whether any one of them
is present or not) are demonstrably taken into account and thus
more clearly planned for, including fulfilment of associated essential
needs, such as transport and access to premises or advocacy.
3.2 Patient and public involvement in the
new NHS, published by the Department of Health in 1999, is a valuable
statement of what PPI can and should offer. "Only by involving
local communities can we gain a better understanding of how local
services need to be changed and developed. By creating greater
local ownership of health services we can improve the quality
and responsiveness of those services and reduce health inequalities,"
states the foreword. Indeed "Working effectively in partnership
with patients can also be of great benefit to the NHS. It delivers
better results for individual patients and better health for the
population." This document contains useful pointers on ensuring
that "patient and public partnership is genuine, not token,
so that people at a local and national level, are fully involved
in decisions both on their own care and on the way in which services
are provided."
3.3 Strengthening Accountability: Involving
Patients and the Public: Practice guidance: Section 11 of the
Health and Social Care Act 2001, published by the Department of
Health in 2003, along with associated Policy guidance, is also
helpful. Reasons cited to involve and consult include:
— Seeking the views of others and having
mutual regard for them is an important element of planning.
— Services are designed and adapted
to respond better to people's needs.
— A consultation allows alternative
proposals to be developed.
— It demands that proper time and thought
is given to patient's and the publics' views on a proposal and
ensures the development of an evidence base for important decisions.
— The experience of patients', the
public and local communities knowledge can be used to benefit
others.
— Better decisions are made because
more people's views, perspectives and suggestions are heard.
— Major decisions are more transparent
and the process for reaching them is understood.
— Trust is built between communities
and the health service.
3.4 The health and social care system is
complex, involving many interlocking strands and participants
whose input is important if successful outcomes are to be achieved,
not least patients and carers themselves. Well-intentioned initiatives
announced by the Secretary of State or a Strategic Health Authority
may not have the desired effects unless shaped by frontline experience
and adjusted through feedback by those most intimately affected.
3.5 PPI can also be seen as an aid to performance
management and improvement, enabling senior management or central
government to check whether their instructions to frontline providers
of care are being followed (for instance on access to GP services).
Where there is an overlap of priorities (eg on hospital cleanliness)
this can be of value, but it should be borne in mind that users
and communities may have a different perspective on quality and
access, and this should not be lost.
3.6 In particular, concerns raised through
PPI Forums, Patient Advice and Liaison Services, Independent Complaints
& Advocacy Services, Trusts' own complaints mechanisms, Ombudsman's
rulings, Judicial Reviews and other legal proceedings, while often
uncomfortable for the NHS, can be valuable not only in achieving
redress for individuals but also in rectifying system errors and
patterns of poor performance. While there are some people who
project on to NHS and social care personnel their dissatisfaction
arising from elsewhere, others who are unhappy about their treatment
may have just cause. All too often, however, local people (especially
those in poor health or who are not very assertive) find it difficult
to get due recognition of and recompense for what has gone wrong,
and organisations to learn from mistakes.
3.7 Regrettably, PPI is sometimes regarded
as solely a presentational matter. For instance, deliberative
events on service reconfigurations to fit in with the NHS white
paper "Our health our care our say" are sometimes treated
as part of a drive not only to fulfil legal obligations but also
to convince local people that proposed changes are beneficial;
any reluctance is assumed to spring wholly from lack of understanding
and fear of change. It may be assumed that professionals have
a complete grasp of all that is important. So when reasonable
concerns are voiced, for instance that adequate community services
will not be in place in time to cope with reduced capacity in
the acute sector, bearing in mind population needs, these may
not be properly heard. In considering changes to complex systems,
it is helpful for these to be scrutinised thoroughly and from
the perspectives of different stakeholders, and bearing in mind
that gains in one area may be offset by losses in another. Meaningful
PPI may seem to slow down the modernisation of the NHS, but is
vital to maximise its benefits and minimise unintended negative
consequences.
4. FORMS OF
PPI: DESIRABILITY, PRACTICALITY
AND VALUE
FOR MONEY
4.1 Following on from the points made above,
PPI can be:
— systematic or arising from individual
or collective reactions to a particular event they have observed
or experienced which may have wider consequences;
— open-ended—enabling users,
carers, local people and their representatives to make suggestions
or discuss concerns—or based on a fixed format, for instance
the patient survey;
— involving all who wish to contribute
or just representatives, whether elected, volunteers or a random
sample.
4.2 In our experience, a combination of
methods and approaches can yield rich results. However it is important
that all who might be profoundly affected by a decision (even
if senior staff believe it will be beneficial) have an opportunity
to comment if possible.
4.3 It is also important to bear in mind,
in the words of Baroness Finlay of Llandaff in the House of Lords
in 2002, "The independence of the view of patients is crucial.
I cannot over-emphasise how vulnerable patients feel when they
are ill. If they feel that they are complaining into an organisation
on which they are dependent for their care, they are terrified
that there may be some backlash against them. Healthcare professionals
ignore the need for an independent patient voice at their peril,
because that is the safeguard in ensuring that we improve the
standards of practice."
4.4 While current policy emphasises the
important area of PPI in commissioning, input on operational matters
is also important. What might seem trivial to someone comparatively
healthy may take on huge significance to people who are extremely
ill, frightened, confused or in pain. Moreover, serious problems
can arise when NHS staff and managers are not attentive enough
to the practicalities of delivering an excellent service. The
increasing involvement of diverse contractors means that new complexities
affecting patient and public access and care are likely to arise.
4.5 The strengths of patient and public
involvement forums include their ongoing relationship with trusts
and local patients, so that they can pick up and track progress,
helping NHS managers and clinicians to evaluate whether their
attempts to deal with a problem have been successful and identify
alternative approaches if necessary. Continuity and the development
of mutual understanding, while maintaining a critical distance,
are important. Forums can also work more flexibly and quickly
and with greater patient focus than larger statutory bodies.
4.6 It is helpful for those seeking to represent
user and public interests to be committed to the highest standards
of public service and equality, especially since experiences of
health care and prevention can be so diverse. Inclusive methods
should also be used, as discussed in numerous documents.
4.7 One approach which we have found useful—and
which is particularly relevant in the context of an emphasis on
multi-professional and multi-sectoral partnership working—is
the development of equity terms of reference. If, for instance,
different "sectors" are represented on a joint planning/commissioning
body (eg NHS, local authority, users/carers/voluntary sector),
a quorum in each "sector" must be achieved to enable
certain decisions to be made. Stakeholders who wish their own
concerns and interests to be advanced are thus required to listen
to and negotiate with others, and take other perspectives into
account. After a while, this can foster a culture in which partners
come to consider issues from different angles even before they
discuss these with other "sectors". We can give further
information on application, if helpful.
4.8 Changing organisational and professional
culture to foster awareness of the need for PPI, and the skills
to make it effective, has been mentioned in many documents, and
remains vitally important. Training is part of this, so that PPI
is seen as the business of all involved in health and social care,
though specialists will continue to play a necessary part. Otherwise,
even if organisations manage to meet their legal obligations,
in practice decisions will continue to be made without adequate
input from patients and the public and due consideration of how
they will be affected.
4.9 Central government guidance and the
legal framework are also important in nurturing adherence to good
practice in PPI. Unfortunately at present, because of resource
pressures and a fragmented approach to efficiency which focuses
on individual components rather than whole systems, cost-cutting
measures are sometimes being implemented without due consideration
of potential negative consequences: just as medication may have
undesired side-effects because of the complexity of the human
body, so too may service changes in the context of a complex system.
Moreover, non-executive directors and board members are being
continually reminded of their duty to stay within budget, but
less emphasis is placed on their responsibilities for ensuring
adequate standards for all and safeguarding equality and human
rights for those with health-related needs. Ensuring meaningful
PPI, and continuing to remind professionals of the need for a
holistic person-centred perspective where different sectors do
not try to shunt costs on to others (including patients and carers
themselves) but rather cooperate for the best outcomes, are important.
5. REFORMING
EXISTING SYSTEM
AFTER ONLY
THREE YEARS
5.1 The current PPI system has demonstrated
valuable successes as well as shortcomings, and it seems to us
that—whatever the pros and cons of the proposed reforms—many
familiar with the current system are not convinced of the need
for another major upheaval after a short time, as opposed to improving
the workings of current arrangements.
5.2 When community health councils were
abolished against strong opposition, the government insisted that,
because "forums are basing themselves on the services of
a particular trust, they will be able to focus very much on the
concerns of patients using those services. That will be a great
advance" (to quote Lord Hunt in 2001), though linking mechanisms
were acknowledged as necessary. Without wishing to revisit the
controversy over the abolition of CHCs, it has not been made clear
why the government has changed its position completely (rather
than, say, emphasising the existing responsibility of forums to
cooperate on matters of joint concern and the relevance to commissioning
matters and patient pathways).
5.3 Again, with regard to the effectiveness
of the existing PPI system, it is not clear why strategic health
authorities (SHAs) have not generally been doing more to monitor
the implementation of the guidance in Strengthening accountability
and utilise the Performance Improvement Framework for Patient
and Public Involvement in the NHS, also published in 2003, in
particular seeking "Documented evidence of liaison with PPIFs
and evidence that feedback has contributed to service planning
and delivery". Indeed, SHAs themselves have not always fully
demonstrated their compliance with Section 11 and shown how user
and public input has helped to shape their decisions. Rightly
or wrongly, the impression has perhaps been created that the integration
of PPI into decision-making has been unevenly promoted at the
higher levels of the NHS, despite the work of a number of champions,
and this has made the task of PPI forums and local NHS PPI leads
more difficult.
5.4 It is also unfortunate that the impression
may have been created that ministers and civil servants take Parliament's
assent to the proposed legislative changes to PPI for granted,
and are asking for time and money to be invested in the new system
before it has been properly debated, refined and finalised.
5.5 Frequent system reform comes at a price,
especially since some time is required for the glitches in any
new set-up to be removed and effective working achieved. At any
rate, if LINks are to be created only to be reviewed a few months
later and abolished in two-four years, as would seem likely if
current patterns continue, this would be unhelpful, and further
undermine confidence in the efficacy of supposed improvements
to PPI structures.
6. WIDER PUBLIC
CONSULTATION AND
THE SCOPE
OF SECTION
11
6.1 Proposed legislation suggests that the
duty to involve and consult should be confined to "significant"
proposals. It has become apparent that what might not seem significant
to a senior manager may be perceived and experienced differently
from the perspective of a service user or carer.
6.2 The point has been made elsewhere that,
where it is unclear whether wider consultation is needed, forums
should be able to advise trusts on this, if kept informed at an
early stage on service proposals. Obviously there will be certain
matters such as major changes to how and where services are delivered
on which users and carers should be consulted, and wider reorganisations
on which the local public's views should be sought.
6.3 Whatever system for PPI is ultimately
agreed, it is important that, as stated in "Strengthening
Accountability" guidance "Services are designed and
adapted to respond better to people's needs", "proper
time and thought is given to patient's and the publics' views",
there is "an evidence base for important decisions",
"Major decisions are more transparent" and "Trust
is built between communities and the health service."
Timothy Modu
Chief Executive, Community Investors
10 January 2007
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