Select Committee on Health Written Evidence

4. Evidence submitted by Arthritis Care (PPI 130)

  Arthritis Care represents the interests of the nine million people in the UK with arthritis, through peer support, access to information and self management training, and campaigning to improve the quality of life for people with arthritis.

  Arthritis Care welcomes the opportunity to respond to the Health Select Committee's inquiry into patient and public involvement. As an organisation, we take user involvement very seriously, both internally and externally. We are working with our volunteers, members and supporters to develop competency skills for more effective engagement with decision makers at a local level. We recognise that user involvement can be hugely rewarding and empowering as an end in itself.

  Arthritis Care would be willing to give oral evidence to the committee if this was requested.

1.   What is the purpose of patient and public involvement?

  1.1  To involve non-professionals in influencing health decision-making locally in order to improve the full range of health services that people use.

  1.2  To support healthcare organisations to be more accountable to users and to strengthen their capacity to respond to the public's views.

  1.3  It is important to understand that people who use the health service not only have a right to determine how it is planned and delivered but also that their experiences of what is effective and what is not are crucial to a full understanding of how to maximise efficiency and effectiveness.

2.   What form of patient and public involvement is desirable, practical and offers good value for money?

  2.1  Some PPIFs have been very effective whilst others have not. It is important to look at the successful models and consider whether and how they can be exported elsewhere. A model that has worked well in one area may not be appropriate in another, or an equally good but different approach may work just as well.

  2.2  There are some key principles, though, that are likely to be met in any successful model:

    —  People should also ensure that their contributions are representative of the experiences or aspirations of a significant group of users and do not merely reflect their own personal views.

    —  Ideally, people involved in PPIF/LINks are in touch with a wide group of service users and are able to act a two-way link between the PPIF/LINks and this wider group.

    —  The local NHS and social care structures must take PPIF/LINks seriously; they need to recognise the important role and unique knowledge and experience being introduced to commissioning and planning discussions and make genuine efforts to incorporate the networks into their key decision-making cycles.

    —  The PPIF/LINks must themselves recognise the enormous complexity of NHS and social care planning and delivery and attempt to understand the barriers and constraints that affect planning and delivery.

    —  A positive dynamic should exist between service users, professionals, planners and commissioners. Each sees the role of the others as important and discussion and debate is structured accordingly.

    —  Service users receive good training, induction and ongoing support so they are able to contextualise their experiences and opinions into the framework in which NHS and social care bodies are operating.

    —  People involved in PPIF/LINks should be able to think strategically and not focus narrowly on operational issues (unless these are so large they are threatening efficient delivery).

  2.3  Arthritis Care and the Arthritis and Musculoskeletal Alliance (ARMA) are involved in an innovative pilot project that is bringing together patients, health professionals, commissioners and planners in a series of local networks around England to improve the planning and delivery of services in the area of musculoskeletal medicine.

  2.4  In addition to direct involvement in the pilot networks, Arthritis Care is additionally developing a project that will train and support users to contribute effectively to the deliberations of each network. Both projects are funded by the Department of Health and ARMA will send a separate paper to the committee giving more information about the project.

  2.5  Early indications suggest that the pilot networks are contributing in a very positive way to assessing and improving services in those areas. If this approach continues and is sustainable it may be a format that could be adopted in other disease areas. Whilst we are not yet ready to suggest a formal federated structure, it would certainly benefit LINks to have representatives from some disease areas who are working in a deeper way within their particular part of the health economy.

  2.6  From observation, the NHS supported Cancer Networks also appear to offer a model for effective group work. Non-professionals (offering their views and articulating the needs of cancer patients) working with health practitioners in a single group seems to generate a higher regard by health professionals for contributions made from "the user perspective". The key needs of people who have cancer can then be clearly communicated by "informed" health professionals along the "care pathway" to other health professionals and health decision makers.

  2.7  If the future LINks meetings bring together colleagues from across the specialist care units (on a rolling basis), healthcare commissioners, GPs, Primary Care Trusts and acute Trusts, the independent healthcare sector, patient groups (on a rolling basis), the voluntary sector, Strategic Health Authorities, Regional Government Development Agencies and Local Authority Adult (Social) Care Services the opportunity for more "joined up" decision making would present itself and further improve health and social care professionals' opinion of the value of patient and public involvement in decision making.

  2.8  The power balance needs to be redressed in the health and social care sector between "commissioner" and "user". Government legislation already enshrines the value of the "patient voice" in local health decision making. The service user contribution to decision making needs to be properly valued by all stakeholders.

  2.9  Professionals will be better able to make informed decisions about local health and social care needs as a result of the valued input of the user perspective. The intangible wariness with which the "commissioner" and "user" approach each other could, and should, become a thing of the past. A mutual appreciation of the "PPI process" to reach reasonable planning decisions would be strengthened.

  2.10  Future LINks networks need to be less strictly governed by a central authority. Whilst a minimum standard of "Terms of Reference" would be required, the specific way by which the LINks operate on a day to day basis should be given over to the constituent members—thus retaining ownership and a sense of self-regulation. Too much time, energy and goodwill was previously lost due to the centralised requirement for strict adherence to the rules.

  2.11  The nature of the commitment required to participate effectively in PPIFs to date has determined the composition of most fora. PPIF/LINks need to be much more representative of their local population not only in terms of gender and ethnicity (including people whose first language may not be English) but also of age and life stage (eg people in mid-career and young people including those who are in full-time education).

  2.12  Full consideration should be given to the advantages and disadvantages of introducing a form of payments for participation in LINks, perhaps similar to the local authority attendance allowance scheme for elected councillors. If this could be done without distorting the motives of those who put themselves forward for LINks it could go some way to widening the range of people able to make the significant commitment necessary to make LINks effective. Certainly, LINks membership needs to better reflect the population as a whole than has perhaps been the case with PPIF.

  2.13  Accessibility is key—the LINks need to be seen to be as genuinely "open" groups and to offer meetings at times to suit participants. Health and social care professionals tend to prefer to hold meetings during office hours. If LINks Networks are able to hold meetings at times likely to attract health and social care professionals the attendance by healthcare staff is likely to increase and thus encourage more joined up working across health and social care departments.

  2.14  Email and written submissions must be given the same weight as personal contributions at meetings. This should allow a broader cross section of the community to contribute even if they are not a full and regular member of LINks.

  2.15  The report of LINks meetings could appear in the local newspaper thus informing the wider general public of issues which affect us all. Appeals for contributions of views from the general public about a topic to be discussed could be canvassed in the local newspaper column. The voluntary sector could offer support to people who have not previously become involved in community decision making meetings. They could help to prepare individuals to learn how best to make a positive impact at LINks meetings and feel a valued participant.

  2.16  The future PPI "resource centre" (designed to support health professionals and social care organisations) does not appear to have the needs of individual service users at its centre. Therefore an additional facility to support the individual LINks participant would be required to enable individual members of the community feel that they were participating as an equal partner in LINks.

3.   Why are existing systems for patient and public involvement being reformed after only 3 years?

  3.1  Although the principles of patient and public involvement are important to support, many of the PPIFs have been ineffective. For LINks to work not only must there be "buy-in" from other areas of health and social services to ensure the views of LINks are taken seriously but the recruitment policies, training, induction, ongoing support and resourcing must be robust.

  3.2  A further failure will fatally undermine the entire concept of patient and public involvement in health and social services planning and this would be disastrous.

4.   How should LINks be designed, including:

Remit and level of independence

  4.1  LINks should be independent of Local Authority and Primary Care Trust funding. Ideally, funding should come direct from the Department of Health according to pre-agreed formulae relating perhaps to the population of the area covered.

Membership and appointments

  4.2  Membership and appointments should be handled by a dedicated team at the Healthcare Commission whose interests are the furtherance of PPI. It is important that appointments are independent of the health and social services bodies with which the LINks are to be working.

  4.3  In addition, there should be criteria developed that reflect not only the specific skills that should be expected of each individual LINks member but which also ensure that LINks are as representative of their local health economy as is possible. This should have regard to the diversity of the population as a whole as well as to different types of medical conditions.

Funding and support

  4.4  External financial support of the LINks by the Department of Health should prevent a skewing of decision-making towards any particular benefactor. Local health scrutiny has previously been compromised due to the funding arrangements of PPI Forums.

Areas of focus

  4.5  The health and social care needs of the local population should be the main focus for LINks. The focus of LINks needs to be much more strategic than has sometimes been the case in the past.

  4.6  Understandably there has been a great interest previously by PPI Forum members in the level of cleanliness of hospitals within their region of influence. It should be borne in mind though that there are currently over 80 agencies undertaking inspections in hospitals (including hygiene). It is not clear to the casual onlooker the "added value" of an inspection visit to a hospital made by a small group of PPI Forum members.

  4.7   There would also be a greater understanding by the general public (and willingness to become involved in the work of the LINks) if they were able to contribute to local impact assessments. These could be in the form of LINks canvassing local opinion throughout their geographical region on the specific needs of people who use NHS health and social care services.

Statutory powers

  4.8  A passing over from PPI Forums to LINks of the statutory power to monitor and report on health services would be highly beneficial to the work of LINks and the impact of PPI on influencing health decision making. Similar powers in relation to social services are also needed.

Relations with local health Trusts

  4.9  LINks should be considered by healthcare professionals and allied health professionals as an equal partner in the drive to make patients at the centre of health decision making.

  4.10  LINks could become a useful conduit of information and support between health and social care teams trying to unite their (at times) disparate methods of working to achieve the united goal of better public health.

National co-ordination

  4.11  Apart from timely steers using national policy guidance notes, there does not appear to be need for national co-ordination of the work of the LINks. The reasoning behind this is that each PCT, Acute Trust and (more importantly in the future) Foundation Trust sets its agenda in response to the commissioning needs analysis.

  4.12  It is hoped that LINks could plan their annual priorities in consideration of the agreed priorities of the local authority social care services and health care services. LINks' chosen areas of work could then complement the work undertaken by health and social services decision makers and support better use of PPI.

  4.13  There may be some benefit to some form of regional-based co-ordination perhaps mirroring Strategic Health Authority boundaries.

5.   How should LINks relate to and avoid overlap with

Local Authority structures including Overview and Scrutiny committees

  5.1  LINks should have a direct link into the work of the Overview and Scrutiny Committees, ensuring transparency of decision-making.

Foundation Trust boards and Members Councils

  5.2  LINks should approach Foundation Trust Boards and Member Councils in the same way they would approach the Primary Care Trusts and Acute Trusts. An even handed approach with all healthcare services will ensure that LINks are treated as an equal partner in the PPI process.

Inspectorates including the Healthcare Commission

  5.3  LINks should inform inspectorates of their work programme for the next quarter so that there is a reciprocal flow of information about reviews and findings. This should help inform Inspectorates and LINks about areas in which to concentrate their relative influence.

Formal and informal complaints procedures

  5.4  LINks should not become involved in any type of informal complaints procedures. The existing ICAS (Independent Complaints Advocacy Service) complaints supporting mechanism for members of the public (and existing procedures within local authorities) should be maintained alongside LINks.

  5.5  The role of LINks is strategic and should not cover individual complaints and concerns. However, LINks should have the right to see aggregated statistics regarding complaints in case they reveal general problems that need addressing.

6.   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.

  When local service users will be affected by a change in the provision of health or social services provided.

Martin Jones

Senior Campaigns Manager, Arthritis Care

January 2007

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