Select Committee on Health Written Evidence

55. Evidence submitted by LMCA (PPI 126)


  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 means—for 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 systems—they 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

Sarah Clarke

Policy Director, LMCA

January 2007

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