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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