66. Evidence submitted by the NHS Centre
for Involvement (PPI 129)
1. BACKGROUND
1.1 The NHS National Centre for Involvement
is a consortium of The University of Warwick, The Centre for Public
Scrutiny (CfPS) and LMCA—an alliance of patient organisations.
The Centre is hosted by The University of Warwick. The Centre
aims to support the NHS as a whole, at local provider, regional
and national levels to lead and sustain patient and public involvement
in delivering NHS services to improve the quality of care and
the efficiency and responsiveness of healthcare organisations.
1.2 The Centre was awarded to the consortium
based on an EU-wide competitive tender with the results announced
by Rosie Winterton on 23 May 2006. The set-up phase of the Centre
started 1 June 2006 and the formal launch took place in London
in November 2006.
1.3 The NHS Centre for Involvement welcomes
the invitation from the Health Select Committee to submit evidence
to its inquiry into patient and public involvement (PPI).
1.4 We recognise the circumstances in which
the Health Select Committee is carrying out its inquiry. The committee
called for evidence at the end of November 2006. Since then,
the Government has published its response to "A stronger
local voice" as well as the Local Government and Public Involvement
in Health Bill.
2. What is the purpose of patient and public
involvement?
2.1 The NHS Centre for Involvement believes
that there are different categories of Patient and Public involvement
(PPI). These range from working on an individual basis around
treatment decision making, involvement in teaching and learning
for health and social care professionals, setting research agendas
and participating in the process, quality assuring healthcare
education and training and evaluating service provision and developing
services (including commissioning). All of these different categories
are dependent on developing relationships across communities but
with a change in emphasis from just providing feedback to being
able to be involved and influence practice, process and strategic
decision making. The Centre recognises the primary purpose of
involving patients and the public at an early stage is to ensure
that all those who manage and deliver healthcare services—as
commissioners, providers or the Third Sector—take into account
their needs and concerns in carrying out their role.
This must include PPI work at "service
improvement" level (in directorates, teams, areas, etc) and
at a corporate/strategic level. It is essential that this approach
is based on an understanding that health and social care should
meet the needs of patients and the public.
Those organisations commissioning and providing
services should be flexible and responsive to the needs of patient
and the public within the parameters of organisational capacity
and budgetary constraints.
2.2 The Centre also believes that effective
PPI should enable a publicly accountable model facilitated through
an ongoing "accountability relationship" whereby patients
and the public and healthcare managers, professionals, staff and
organisations have opportunities to "give and receive accounts"
of the service. This should include formal and informal opportunities
for patients and public, whether as individuals or groups, to
voice their needs and concerns directly and indirectly to managers
and clinicians at all levels of healthcare provision Including
professional training.
3. What form of patient and public involvement
is desirable, practical and offers good value for money?
3.1 Effective PPI should be nurtured so
that it grows organically within and around healthcare organisations
as part of a "public facing" culture. Opportunities
need to be provided for patients, carers and the wider public
to have clear and flexible opportunities to be involved (directly
or indirectly), share experiences and influence the future services
and learning in a range of ways:
— As individuals—through relationships
with clinicians as "expert" patients—and through
more formal complaints procedures/advocacy arrangements
— As groups or communities of interest
(based on geography or medical condition)—through opportunities
to advance particular causes or concerns in relation to available
services and treatments
— As representatives of local communities
and the public—as non-executive directors/governors and
elected representatives on Trust boards or Health Overview &
Scrutiny committees or in other relevant bodies
3.2 An appropriate relationship between
individuals and groups with and through elected or appointed representatives
is one mechanism for ensuring the practical approach and best
value for money. Other forms of accountability, however, are also
essential.
3.3 It should be recognised that practical
patient and public involvement is not just about techniques, nor
is it about structures. The Centre suggests that it is dependent
on clarity of aims and objectives and making sure that changes
result on the basis of the involvement. Patient and public involvement
activities and the impact they have on service provision must
be understood in the context of high quality evidence.
3.4 All staff whether providing or commissioning
services, or supporting health and social care services must be
trained and supported to do high quality PPI. This will ensure
that their work is shaped by the views experiences and priorities
of patients and the public.
4. Why are existing systems for patient and
public involvement being reformed after only 3 years?
4.1 The NHS Centre for Involvement believes
that the implementation of the Health and Social Care Act 2001
has resulted in more effective local authority health overview
& scrutiny committees. The proposed system reform is an opportunity
to rebuild in the light of experience and ensure greater clarity
of complementary roles and responsibilities across the health
and social care spectrum.
4.2 The Centre believes that once the reform
of the system takes place it will require a period of stability
in order to be integrated into everyday practice in the NHS and
Social Care, generate trust from local people and health and social
care professionals and attain its full potential for driving locally
responsive high quality service provision.
5. How should LINks be designed?
5.1 The Local Involvement Networks (LINks)
should be designed within a framework which allows for as much
local discretion as possible for LINks to operate effectively.
5.2 The purpose of LINks is to ensure that
in each locality there is a network which patients and the public
can join, and which healthcare organisations can consult with
to make sure that local needs and concerns are communicated as
and when appropriate eg in relation to commissioning, new service
provision, service reconfiguration, service evaluation, addressing
local health inequalities.
5.3 Each LINk should have as a minimum a local
co-ordinator with an appropriate level of administrative support
and a permanent and visible base. Each LINk should then agree
what formal arrangements are needed to operate effectively. If
needed a number of options for good governance of LINks could
be made available, eg organising committee/board/local chair.
LINKs should provide regular formal opportunities for local discussion
and debate about local health issues. LINks should also be required
to generate annual priorities, in conjunction with relevant NHS/Social
Care organisations and in partnership with their community. This
would offer a balance of being able to meet national health and
social care priorities together with satisfying perceived local
needs.
5.4 LINks should not be formally connected
to any one health or social care organisation but should be independent
of all. Their remit should be to advance the voice and concerns
of patients and the public in response to local need and experience.
Local health and social care organisations should approach LINks
as part of their duty and responsibility to consult patients and
the public.
5.5 As a network organisation, each LINk
through its co-ordinator, will connect with existing local and
regional voluntary and community groups involved in health and
social services as well as local authority community development
organisations. It is likely that these groups will be in a position
to generate support and practical advice which LINks can tap into
to become a robust local voice for patients and the public. These
organisations should have a range of forms from charitable trusts
through to user-led groups.
5.6 LINks should be a key source of information
about local services, from public, private or voluntary sector
organisations, to the regulatory authorities (the Healthcare Commission
and the Commission for Social Care Inspection).
6. How should LINks relate to and avoid overlap
with other organisations?
6.1 LINks should be regarded as a body that
strengthens local public accountability for local health and social
services. The LINk should develop constructive working relationships
with all NHS social care bodies including Foundation Trusts and
the Health Overview & Scrutiny Committee.
6.2 LINks must also build on and use existing
information available in their locality. For example, large amounts
of information is already gathered through PCT and Trust patient
surveys, the Annual Healthcheck conducted by the Healthcare Commission,
public health data and health plans from NHS organisations.
6.3 LINKs need to be well positioned to
strengthen the interface between service and workforce development
by ensuring that the views and experiences of patients and the
public inform and influence education commissioners.
7. 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?
7.1 The NHS Centre for Involvement believes
that key to commissioning high quality health and social care
services is the involvement and understanding of the needs of
local communities. We believe that every opportunity should be
made available for patients, the public, carers and users of health
and social care services to be involved at the start of any changes
to services and to help shape those changes.
Ian Brittain
NHS Centre for Involvement
January 2007
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