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 membersthus 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 keythe 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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