55. Evidence submitted by LMCA (PPI 126)
1. BACKGROUND
1.1 LMCA is the umbrella body for over 100
national voluntary organisations working to meet the needs of
people with long-term health conditions. Our vision is of a society
in which people with long-term health conditions have control
over their lives and can live them to the full.
1.2 LMCA welcomes the invitation from the
Health Select Committee to submit evidence to its inquiry into
patient and public involvement (PPI), however is mindful of the
tight deadlines for responding which has restricted LMCA's ability
to consult fully with its members. LMCA contacted its members
for comment but only received a limited response.
1.3 LMCA will restrict its remarks to those
areas relevant to an umbrella body representing voluntary sector
patient organisations with an interest in long-term conditions
and where LMCA believes it can add value.
1.4 LMCA is aware of the circumstances in
which the Health Select Committee is conducting its inquiry. The
committee called for evidence at the end of November 2006. The
Government has since published legislation to introduce proposals
directly relevant to the Health Select Committee's inquiry on
patient and public involvement in the NHS. The health legislation,
unusually housed in a local government bill "The local government
and public involvement in health" bill is likely to receive
a second reading before the health select committee has had a
chance to produce a report. LMCA is concerned that legislation
on patient and public involvement may be too far advanced in its
legislative stages for the Health Select Committee's conclusions
and recommendations to have any influence on the Government's
proposals within the bill.
2. What is the purpose of patient and public
involvement?
2.1 LMCA believes that there must be effective
structures and processes for patient and public involvement (PPI)
in order to achieve a truly patient-led service. This must be
the purpose and aim of any PPI system. LMCA would argue that there
is no simple, structural solution to PPI; instead patient voice
will need to be embraced at all levels of health and social care,
from the planning stage, during the commissioning of services,
in the delivery of services and when evaluating the outcomes of
health and social care services.
2.2 The most important "involvement"
takes place during interactions between individual. people and
professional staff. Partnerships in care and shared decision-making
are the most significant changes we can make for patient-centred
services. The successful delivery of genuine patient choice (allowing
individuals to be fully involved in decisions about how they will
be treated) is as important to achieving full patient and public
involvement in health and social care as any new system or structure
of PPI.
2.3 The Government has stated that one of the
main purposes of the new framework for PPI is to ensure the involvement
of local people, including in particular those. who are seldom
heard. While LMCA fully supports this aim, the Government's response
to "A Stronger Local Voice" shows, to date, that little
progress has been made. Of the responses to the consultation on
the new proposals for local involvement networks (LINks) only
13% of submissions were received from the voluntary sector and
a mere one% from the general public. The majority of responses
were received from those already involved in current PPI structures.
The new framework, including LINks, has much ground to cover in
order to improve the reach of PPI so that it truly reflects the
wishes and needs of all patients and the public including seldom
heard groups. Engaging such groups will require fresh thinking,
new resources and new approaches. It is not clear in the Government's
response to "A stronger local voice" how LINks will
be able to achieve further reach where current structures have
failed, but we welcome the renewed emphasis on connecting formal
mechanisms, such as LINks, to community-based groups.
3. What form of patient and public involvement
is desirable, practical and offers good value for money?
3.1 LMCA believes patient and public involvement
must be an intrinsic part of public services, with opportunity
for involvement at all levels. LMCA supports a system-based approach,
such as LINks to ensure that formal channels of patient and public
involvement are built into the health and social care structure
at a local level. However, in addition to this individual service
user involvement will also be achieved through the effective implementation
of genuine patient choice and the delivery of accurate, up-to-date
and comprehensive patient information.
3.2 LMCA also believes that there is a need
for complementing improvements in involvement at a national level.
LMCA is a key supporter of the National Voices project which has
been established by a working group of members from the health
voluntary sector. The aim of National Voices is to improve engagement
with the voices of service users, as represented through the health
voluntary sector, in health and social care policy decisions taken
at a national level. National Voices would seek to become involved
at all stages of policy development, from feeding in initial ideas,
commenting on proposals at the earliest possible stage, shaping
the design and roll out of new national policy and commenting
on existing policy.
4. Why are existing systems for patient and
public involvement being reformed after only three years?
4.1 LMCA is not able respond as to why existing
systems for patient and public involvement are being reformed
again. However, LMCA would welcome a strengthening of PPI in health
and social care and can see merits in the new system of LINks
proposed in "A stronger local voice" and included in
the "Local Government Public Involvement in Health Bill".
In particular LMCA would welcome voluntary sector involvement
in shaping local PPI arrangements. In many areas the voluntary
sector, including LMCA, members are already engaged in promoting
the voice of local service users. Where such expertise exists,
LMCA hopes that LINks will be able to build on the voluntary sector's
work rather than duplicate it.
4.2 It is clear that once current structures
have been established, patient and public involvement systems
would benefit from a period of stability in order for the system
to bed down, form good working relationships with local partners
and create a strong identity within its local community.
5. How should LINks be designed?
5.1 LMCA was a member of the Expert Panel
established to make recommendations on the future direction of
PPI. When the expert panel published its conclusions on 12 May
2006, one of its recommendations was to establish non-statutory
bodies to replace patient forums. LMCA notes that proposals in
the current legislation create a statutory duty on each local
authority to establish a LINk in its area. There will also be
a new statutory duty on service-providers to enable LINks access
to certain premises and to require service providers to give information
about their services and priorities to LINks as well as respond
to any recommendations made by LINks. As such LINks do not have
a direct statutory basis, but will be empowered by duties placed
elsewhere.
5.2 LMCA supports the flexible nature by
which LINKs will be established and recognises that having statutory
forces in place will help LINks make NHS and social care bodies
accountable to local service users and the public. It is crucial,
however, that LINks co-ordinate their requests with other organisations
that have a regulatory or scrutiny role so that the burden of
requests are not excessive. It is also important to ensure that
there is relevant expertise housed in each LINk so that any information
or premise search is conducted effectively. Statutory force could
help LINks, but PPI will not automatically succeed as a result
of statute, as experience has shown.
5.3 Although LMCA supports the proposal
that LINks should not be tied to a rigid structure, but instead
tailored to suit local needs and requirements, LMCA is keen to
ensure that LINks are able to communicate their services and work
effectively to patients and the public. PPI has undergone many
structural changes in the last few years and as such members of
the patient and publics are rightly confused as to where or who
to turn to, either independently or collectively, in order to
raise a matter of concern about their health or social care service.
5.4 The Government's response to "A
stronger local voice" explains that LINks will be a network
consisting of many different groups and bodies. It goes on to
explain that service users or members of the public may approach
LINks through different meansfor example via Patients Advice
and Liaison (PALS) Officers, through individuals or members of
LINks, via websites or comment cards. LMCA's view is that LINks
will have to work hard to establish a clear identity within their
communities so that patients and the public are aware of their
existence, are aware of the work that they do and are clear about
how they can get involved should they wish to.
5.5 LMCA agrees that the work of LINks should
cover social care as well as health. Often service users do not
distinguish between who it is that is providing their care service.
Having a system of patient and public involvement that looks at
health and social care as a single entity will help to achieve
the provision of seamless services.
5.6 LMCA supports the view that LINks should
be established in a geographical area rather than tied to a specific
NHS trust as this will help create a whole systems approach to
care. In additional LINks are likely to be more independent of
providers and health commissioners because of their status outside
of trusts. Independence is key to the success of PPI. LMCA hopes
there will be good opportunities both for voluntary organisations
to become involved as host organisations or to become involved
in LINks.
5.7 LINks need to build on the existing
strengths and expertise already held by those involved in PPI
under the current structures, as well as benefiting from the perspectives
of a wider diversity of people. LINks will need to find innovative
ways to reach out to those people who want to get involved but
are not yet included. The Government should recognise that this
may require additional resources and new ways of publicising and
presenting information and opportunities. There is already a body
of knowledge about how to engage people, much of this from the
voluntary and community sector and outside health. We look forward
to the new NHS NCI bringing this together.
5.8 Many people who get involved with PPI
will be volunteers. As such LINks should have adequate resources
to ensure that volunteers, who are giving up their valuable time,
are given the' necessary support and training for their needs
in order to perform a valuable role within LINks.
5.9 LMCA notes that in the Government's
response to "A stronger local voice" (paragraph 3.0)
it is unlikely that there will be separate resources to establish
a national organisation for LINks. Rather the Government explains
that LINks could use some of their funding to establish a national
body should they wish. LMCA believes this is a significant departure
from the current structure, where the Commission for Patient and
Public Involvement in Health received approximately £9 million
annually to support its costs. LMCA is concerned that failing
to recognise a cost associated with national co-ordination may
result in an overall shortfall of resources for LINks for co-ordinating
their work across local authority boundaries and nation-wide.
LMCA believes that the Government should resource local authorities
with at least an amount equal to the total budget for PPI delivered
under the previous (structure in order to secure the successful
development of Local Involvement Networks.
6. How should LINks relate to and avoid overlap
with other organisations?
6.1 There are a number of bodies involved
in PPI. Equally a number of mechanisms already exist through which
patients and the public feed in their views, comments and complaints
to health and social care organisations. Bodies include local
NHS organisations themselves, PALs, local NHS trusts, foundation
trust boards and governance structures, Local Authority Overview
and Scrutiny Committees, the Healthcare Commission and the newly
established NHS National Centre for Involvement. It would be helpful
to service users and the public if each body was clear about its
remit and functions so that patients, the public and the NHS itself
can identify who to turn to with their particular concern. Likewise
LINks will need to build relationships with each of these bodies
to avoid duplication of work and to prevent any confusion about
who is doing what in each locality.
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 patient surveys conducted
by the Healthcare Commission, voluntary groups and established
organisations and institutes. LINks must be careful not to reinvent
the wheel where information or expertise is already available.
LINks should complement and build on existing systemsthey
should not add to confusion by creating alternative structures
and systems.
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 Any organisation which commissions or
delivers care services should have at its heart a process for
involving and taking into account the views and wishes of its
service users. Service users should be involved at the earliest
opportunity, in particular when an organisation is considering
making changes to the type, level or configuration of services
available in a particular area. The establishment of LINks does
nothing to dilute this necessity.
8. Further LMCA Comment
8.1 LMCA welcomes LINks as an opportunity
to strengthen PPI in health and social care. Without effective
PPI, services will never succeed in becoming truly patient-centred.
LMCA is optimistic that LINks will offer a good opportunity for
voluntary sector participation in PPI.
8.2 LMCA will continue to work with voluntary
sector partners to develop National Voices, a networked body of
organisations representing the interest of service users in national
policy formulation. LMCA does not see National voices as a replacement
for CPPIH or for a national voice for LINks.
David Pink, Chief Executive of LMCA was a member
of the expert panel whose recommendations were used to inform
ministers in the development of the new arrangements for PPI.
Copies of the expert panel's report can also be found at tinyurl.co.uk/jqjg
Sarah Clarke
Policy Director, LMCA
January 2007
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