Select Committee on Health Written Evidence

77. Evidence submitted by the Parkinson's Disease Society (PPI 1200

  1.  The Parkinson's Disease Society (PDS) believes that enhancing the voice of the patient in service planning must be at the centre of patient and public involvement in the NHS. People with Parkinson's are often the most knowledgeable about their own condition and how it affects them, and have a valuable contribution to make in working with the NHS and local authorities to improve the quality and efficiency of local services.

  1.2  The PDS welcomes proposals to establish local involvement networks (LINks) for every council with social care responsibilities. This has the potential to deliver more integrated health and social care services.

  1.3  The PDS welcomes moves to increase co-terminosity with Local Authority boundaries. This is greatly in the interest of people with Parkinson's as, through the course of their condition, they will have varied and interrelated health and social care needs, for example, palliative care and carers support.

  1.4  The PDS has some 30,000 members and more than 300 local branches and support groups who are very keen to engage in the local decision making process. Many people with Parkinson's around the country are actively involved in PPI forums.

Patient and Public Involvement Project (PPI Project)

  1.5  The Parkinson's Disease Society has worked to increase the influence of people affected by Parkinson's on health and social care services. In 2003 the Department of Health supported the PDS with a Section 64 Grant to support branches and groups to become involved in and influence local health and social care services.

  1.6  Since then the Parkinson's "Patient and Public Involvement Project" (PPI Project) has worked with PDS branches, support groups and individuals in pilot projects to help them influence health and social care planning. The PPI Project has identified resources that can support people affected by Parkinson's to be more effective in making their views about health care known and influencing planning, services and policy.

  1.7  The PPI Project involved six pilots across England and these pilots identified the important factors crucial for successful patient involvement in local health services. Below are two case studies which provide useful evidence of good practice.

PPI Case Study—Carers Experiences in the South West Pilot (Avon, Gloucestershire and Wiltshire)

  1.8  One pilot project in the South West, which involved branches of the PDS and groups of volunteers, set out to give carers of people with Parkinson's a voice in the development of home care services. This involved semi-structured interviews and group meetings, culminating in a report about carers' experiences which formed the basis for meetings with Local Authority carers officers.

  1.9  Facilitating a formal dialogue between carers of people with Parkinson's, PDS volunteers and PDS branch members increased awareness of local authority support to carers. Local Authority officials were in turn made more aware of Parkinson's and the PDS. The personal experience of Parkinson's amongst Branch volunteers was valued by carers who took part in the pilot.

2.   One PDS Volunteer Who Took Part in the Pilot said:

    "We were unsure about our abilities to do this but we found the common spine for one-to-one interviews straightforward. Sharing the work so that one of us took notes and the other managed the interview was essential. In each interview we were struck by recent improvements in support available for carers but also how isolated and vulnerable people who care for someone with Parkinson's can be. It was hard not to want to step in and try to change things, and where we could provide information or signposts to support we were glad to do that. The project has encouraged us to address other issues and may have provided a foundation for other work next year."

PPI Case Study—Depression and Parkinson's (Avon, Gloucestershire and Wiltshire)

  2.1  This pilot, undertaken by the Cirencester Branch, consulted people with Parkinson's and their carers in order to ascertain the incidence of depression amongst people with Parkinson's and to develop a map of local psychological support services. One aim was to inform local NHS commissioners about the likely level of need for psychological support and to influence local provision of psychological support services.

  2.2  Meetings took place between the PCT Patient Advice and Liaison Service (PALS) team and people with Parkinson's and their carers to discuss how their views and experiences could influence NHS services. The PDS Branch and the NHS Trust were keen to ensure that the project's design and methods for member consultation were strong enough to influence the NHS.

  2.3  Project planning meetings emphasised the need for a structured programme of research using depression scales and inventories, focus groups and individual interviews across the county. The Trust proposed a programme of research led by the lead psychologist, supported by a psychology assistant.

  2.4  Volunteers worked hard to develop ideas for the project. They learnt much about how different parts of the NHS took the opportunity to engage with and involve people with Parkinson's in developing services. However,

    —  PALS information was helpful but did not recognise the contribution of user-led research to PPI or suggest collaboration with others (for example, the PPI Forum or the local Health Overview and Scrutiny Committee).

    —  The NHS Trust led the Branch to a sound research proposal but Branch members found they could not engage with it. There was no exploration of the differences between consultation and research for Branch and volunteer engagement.

    —  Branch members and volunteers felt that the interests of people with Parkinson's were increasingly lost as the research design grew more complicated.

One PDS Volunteer said:

  2.5  "The consultation programme proposed by the NHS Trust was daunting for members and volunteers. Most felt that they would gain little from such a large commitment. There were other, simpler, ways of collecting views and experiences that would have informed NHS services."

Lessons to Learn from the PPI Pilots

  2.6  These pilots illustrate the important factors to take into account when planning for successful public involvement in developing health and social care services:

    —  The expertise and resources of the voluntary sector should be harnessed when consulting the users of health and social care services.

    —  Carers and PDS volunteers with experience of Parkinson's should be valued for their insight, sensitivity and practical knowledge about the effect of Parkinson's and the delivery of health and social services.

    —  PDS staff are well placed to mobilise and sustain volunteer effort to influence local services by providing information, guidance and support.

    —  Branches and voluntary groups are more likely to sustain involvement and influence over time when they can work together on issues and share resources.

    —  PALS must support branches and groups in making their members' views known and by signposting local voluntary groups and patient involvement initiatives.

    —  Public sector funds should be available to support involvement—from travel expenses to meeting costs.

    —  A variety of methods should be used to gather different views, experiences and perspectives. These include formal structured interviews, informal discussions, and meetings with NHS and local authority officials.

    —  User led research makes the most of experiences and interests.

    —  Health and social care staff must actively support alliances and partnerships who respond to consultation opportunities. NHS services (especially PALS) ought to put people in touch with groups that can help them both present their views and define effective ways of collecting and presenting others' views.

    —  NHS and LA databases of organisations interested in consultation and involvement around relevant services (including neurology, carers support, older people, psychological therapies, access to allied health professionals and therapies) should include information about local PDS branches.

    —  Local "maps" of NHS and LA structures and systems should be freely available and proactively provided for all branches, groups and volunteers so that they can target information and influence effectively.

    —  Administrative and analytical support for volunteers involved in collecting people's views and influencing services, including arranging meetings, collating and analysing policies and practices and producing reports, should be provided by the new LINks.

    —  Feedback must be provided to those consulted.

    —  The nature and impact of Parkinson's on an individual's involvement must be taken into account.

2.7  Design of LINks

    —  The PDS believe that existing PPI Forum Chairs and members should be invited by local authorities to meetings in order to discuss future arrangements and an effective transition.

    —  The PDS believe that the Department of Health must ensure that patients are not left in a vacuum during the transition between PPI Forums and LINks, as they were between the demise of Community Health Councils and PPI Forums becoming effective.

    —  The close links that existing PPI Forums have with the Patient Advice and Liaison Services (PALS) must be maintained. As illustrated in the PPI project pilots, PALS are vital for patients currently using services provided by the local Trust and are one of the many services PPI Forums link with.

    —  At a time when local authorities are reported to be over £1.7 billion in debt (Association of Directors of Social Services 15/03/06), the PDS believe it will be important that LINks are properly funded, to ensure they apply equally across the country. The PDS believe it is essential that the budget for LINKs, paid to local authorities by central government, is ring-fenced.

    —  With the current changes to the NHS currently taking place, the PDS believe that it is more vital than ever that existing PPI Forums remain active in providing the voice of the patient in local decisions.

2.8  Voluntary and Community Sector

    —  It is encouraging that local voluntary and community groups will be invited to become members of LINks. The PDS welcomes the recognition of the important role that such groups can play in promoting community influence in health and social care.

    —  Many members of the PDS are members of existing PPI Forums. The PDS urge the Department of Health to ensure that local community groups and voluntary organisations are aware of the changes that are being made and the opportunities to get involved in future LINks.

2.9  Attracting members of LINks

    —  Recruitment of members to a LINk must be open, and focused on creating a diverse and effective network, drawing on expertise from both the health and social care sector.

    —  The NHS Appointments Commission is the expert body that was set up to make public appointments, so it is logical that recruitment on the scale necessary to maintain forum numbers is carried out by an organisation that is expert in making appointments. However, the PDS believe that this could place the emphasis on health rather than social care. The Association of Directors of Social Services must also be involved in the process of recruiting members to LINks.

3.  Governance Arrangements for LINks

    —  The PDS does not support the idea of a specific body, such as the Commission for Patient and Public Involvement, being set up to recruit members, fund and oversee LINks. Resources must be channelled directly to support LINk activity and, as noted above, should be ring-fenced.

    —  Each LINk should be led and controlled by an effective Board of trustees who must ensure that the network upholds and applies the principles of equality and diversity, so that it is fair and open to all sections of the community in all of its activities.

    —  Patient Public Involvement Forums currently have statutory rights to enter and inspect NHS premises. The PDS believe it is essential that the same rights be given to LINks.

    —  Overview Scrutiny Committees often use PPI inspection reports as evidence in their reviews. Involvement of lay people in inspections by the CSCI is not a substitute for loss of local inspection rights. If LINks are to provide OSCs and PCTs with information, without inspection rights the quality of this information and its breadth are limited.

3.1  Response of Commissioners

    —  The PDS welcomes the idea of PCTs developing a framework for reporting on commissioning policies in the form of a prospectus.

    —  A Stronger Local Voice suggests that the main focus for Overview Scrutiny Committees should be the commissioning process through which local services are shaped. The PDS welcomes the proposal that OSCs will have to respond to referrals from LINks. A strong working relationship with their local LINk is therefore essential.

    —  Plans for PCTs to formally respond to public petitions, if more than one% of the local community are unhappy with a particular service, are welcomed by the PDS.

3.2  Host organisation to run a LINk

    —  The contract with the local authority must strike an equal balance between health and social care, so that the host organisation is able to develop expertise in both areas.

    —  The host organisation should be in a position of financial stability and committed to the values of diversity and inclusion. The PDS believe that knowledge of the impact of long term conditions and an understanding of good quality associated services would be an advantage.

3.3  The Parkinson's Disease Society

  The Parkinson's Disease Society (PDS) was established in 1969 and now has 30,000 members and over 300 local branches and support groups throughout the UK. The Society provides support, advice and information to people with Parkinson's, their carers, families and friends, and information and professional development opportunities to health and social services professionals involved in their management and care.

Nicholas Bungay

Parkinson's Disease Society

10 January 2007

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