6. Evidence submitted by Asthma UK (PPI
103)
Asthma UK welcomes the opportunity to submit
a response to the Health Committee's inquiry on patient and public
involvement in the NHS. As the voice of people with asthma, Asthma
UK is a proactive organisation that puts people with asthma first
to offer solutions which improve the quality of life for people
with asthma.
Asthma UK is the charity dedicated to improving
the health and well-being of the 5.2 million people in the UK
whose lives are affected by asthma. We work together with people
with asthma, their carers, health professionals, and researchers
to develop and share expertise to help people increase their understanding
and reduce the effect of asthma on their lives.
We would particularly like to draw the attention
of the Committee to the following points:
Effective patient and public involvement
improves services and brings benefits for service users, communities
and the NHS
Asthma UK is carrying out several
projects intended to secure PPI in our own work and promote it
in the health service.
The establishment of a system in
which LINks are given the powers and support to genuinely and
effectively represent local communities is essential.
Previous experience of PPI must be
put to use in planning and implementing the new system.
Asthma UK is especially keen for
PPI in commissioning to be more robust and is working collaboratively
with other leading charities to produce a web-based toolkit which
will facilitate the work of commissioners in this area.
What is the purpose of patient and public involvement?
1. Well-implemented strategies for patient
and public involvement hold substantial benefits for patients,
carers, for communities and for the NHS. Only by ensuring the
involvement is effectively sought can we secure mutual understanding
and constructive dialogue between all those who use or work in
the NHS.
2. The potential benefits for patients,
service users and carers substantially lie in the improvements
in service design and delivery that can develop from effective
input. Through effectively mapping and understanding the patient
journey and user experiences in collaboration with those who experience
services, gaps in, and quality of, provision can be identified
and the best mechanisms for service delivery can be developed.
The additional information accessible to fully engaged patients
may also affect demand and drive up standards through the exercise
of choice. Patients also stand to benefit through being empowered
to directly affect decisions about health, which will Lead to
a more comprehensive interest in their conditions and a more constructive
relationship with health professionals, improving concordance
and helping to empower a greater number of patients to manage
their own conditions.
3. The purpose of patient and public involvement
from the perspective of communities is in securing a genuine say
for local people and voluntary sector organisations. This, in
turn, will increase legitimacy for decisions made on behalf of
local people and improve public confidence in the services they
receive.
4. These benefits are also of considerable
value to clinicians and managers in the NHS. Better, more appropriate
services should be a critical aim for NHS staff, and will also
be a more efficient use of resources than some ineffective services
that have been developed without adequate consultation.
What form of patient and public involvement is
desirable, practical and offers good value for money?
5. There are certain principles that should
run through all plans for patient involvement:
Policy must be designed to ensure
that it is inclusive, accessible and makes a positive difference
to patients' health.
There is no single or best way to
secure patient, user and carer views. Patient and public involvement
need not necessarily take on a single prescribed form at either
national or local level, and we would not wish for national guidance
to inhibit local innovation. Nevertheless, Asthma UK would like
to see more evidence of commitment from the Department of Health
to ensuring that involvement is embedded in some form across all
functions of the health service and that LINks are given every
opportunity, necessary support and effective powers to flourish
and meaningfully represent local interest in health and social
care.
6. Asthma UK seeks to ensure that people
with asthma are engaged with our work through a number of mechanisms,
many of which could be employed more widely. These include the
development of health promotion materials in 25 languages, regular
surveys and focus groups, and our Speak Up For Asthma volunteer
programme.
7. A substantial current project is the
development of a User and Carer Advisory Forum, for which we are
now recruiting members. Asthma UK places huge emphasis on listening
and responding to the needs of people affected by asthma, and
the new forum is an important way to do this. Meeting four times
a year and being broadly representative in terms of the diversity
of the UK population, it will provide a communication channel
between people with asthma, and carers of children with asthma,
and Asthma UK staff and Trustees. The new forum will help contribute
to shaping the way we do our work, the issues we engage with and
what people with asthma and their carers think is important in
improving the quality of life for people with asthma.
8. We are also seeking to enable commissioner
to more effectively involve patients and the public in their work
by developing a web-based commissioning toolkit for long-term
conditions. This ground-breaking project is being developed in
collaboration with the British Heart Foundation and Diabetes UK,
and includes extensive advice on how to involve patients in each
stage of the commissioning process. It also provides the opportunity
to access a comprehensive library of related documents and to
share good practice via case studies and a discussion forum.
9. Numerous other demonstrations of good
practice in patient and public involvement can be identified.
In 2004, for example, the London Borough of Newham produced a
particularly effective review of asthma services, beginning with
a public meeting and continuing to involve people with asthma
as members of the Health Scrutiny Commission group throughout
the review process. In 2006, Asthma UK's Challenge Fund provided
support for the Adolescent Asthma Action and Help (AAAH) Project,
a scheme in which a group of teenagers in Dudley produced a video
resource for schools in order to explain the effects of asthma
on their lives. Work such as this is greatly valuable, and similarly
innovative projects should be actively promoted elsewhere.
How should LINks be designed?
10. Asthma UK would welcome the introduction
of LINks centred around communities and patient journeys and coterminous
with local government and PCTs. If they are carefully structured
and given the appropriate support, these have the potential to
build on the work of Patient and Public Involvement Forums (PPIFs)
and take forward the way in which patients can participate at
a local level. The establishment of LINks presents an opportunity
to build on best practice, develop improvements and to demonstrate
a real commitment to the practical implementation, as well as
the principle, of patient involvement.
Remit and level of independence
11. There are some risks in arranging for
LINks to be hosted by organisations outside the public sector.
While we can appreciate the benefits of flexibility to local needs
and of engagement with different local groups, we are concerned
that local variation may make LINks substantially less effective
in some areas than in others. We are also concerned that in being
coordinated outside the NHS and the local authority, LINks may
be easily sidelined. This must not be allowed to happen. Nevertheless,
independence from government is an important principle, and the
contribution that third sector host organisations can make in
engaging with local communities and in implementing innovative
practices is invaluable. Perhaps an evaluation of the arrangements
for PPIF support would be helpful in order to extract lessons
for the future.
Membership and appointments
12. Recruitment to LINks is a key concern
in their establishment. Effective recruitment based on a community
empowerment model takes time, particularly when aiming to engage
people not traditionally involved in health decision making. This
should be acknowledged in the planning process. Asthma UK recommends
that government should learn from the experiences of CPPIH in
recruiting to forums since 2003 and also from the voluntary, patient
and community sector. Including membership of a LINk as a recognised
public duty would also be useful in attracting patients and the
public to participate.
13. There must also be a mechanism to engage
with more patients, particularly with patients who have not had
the opportunity to raise their concerns in the past. Local and
national charities including Asthma UK should be able to help
secure more comprehensive community engagement.
14. It is also important to recognise that
retention is as important as recruitment and that members will
only stay if they feel valued and well supported. Members should
be reassured that they will be have any additional needs fully
met through the provision of services such as interpreters, signers,
and provision for meeting carers' costs. They should also be offered
speedy reimbursement of all out of pocket expenses including loss
of earnings and, where requested, they should be given payment
in advance for potential expenses.
15. For some of the same reasons, LINks
should not place too high a demand on participants. Many people
found that the time required by Patient and Public Involvement
Forums was too much for them. Like many long-term conditions,
the impact of asthma on quality of life can fluctuate over time,
so it can be difficult for people with asthma to make Substantial
commitments.
Funding and support
16. Funds must be made secure and ring-fenced.
It should not be possible for local authorities to divert money
away from LINks to fund unrelated projects: doing so would undermine
the credibility of the LINk organisation and inhibit its ability
to function effectively.
Areas of focus
17. The focus of LINks should not be excessively
restricted, and must be allowed to evolve in order to adequately
address local concerns. Nevertheless, the particular focus on
mental health services, ambulance services and specialist trusts
which PPIFs have delivered in some areas, could valuably be retained.
Consideration could also be given to developing joint working
arrangements between LINks with regard to these particular services
as they often cover multiple boroughs and, in the case of specialist
trusts such as Great Ormond Street, may be national.
Statutory powers
18. We would suggest that LINks inherit
the full range of statutory rights of PPIFs as well as being given
the right to be formally consulted on substantial variation in
service provision. Having the right to be formally consulted and,
if necessary to refer matters to the Secretary of State for Health,
would confirm that LINks were bodies with meaningful powers in
matters of considerable public interest such as hospital closures
or service reductions. LINks should also have clear powers to
refer matters of concern to Overview and Scrutiny Committees for
review.
National co-ordination
19. As indicated above, there is much to
be learned from the experiences of CPPIH in this area. Some more
indication from the Government of whatif anyinstitutional
arrangements will be made for LINks at the national level would
be very welcome. It is Asthma UK's understanding that National
Voices is not intended to be a co-ordinator or national representative
of LINks. If this is the case, then the nature of the relationship
between LINks, National Voices and any proposed successor organisation
to CPPIH should be made clear from the outset.
How should LINks relate to other organisations
and avoid overlap?
20. Local Authority structures including
Overview and Scrutiny Committees
The Department of Health's latest guidance leaves
the precise nature of the proposed relationship between LINks
and OSCs unclear. It is specified that LINks will be independent
but have the power to refer matters to OSCs and receive an appropriate
response. However, it is also indicated that the LINk will only
be able to take an active role in OSC review activities if the
OSC deems this to be useful.
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?
21. Asthma UK is keen to see the improvement
of patient and public involvement in general, but we are specifically
concerned about how it is implemented by commissioners. We are
pleased that the duties to involve and consult patients and the
public are to be clarified, and that the duties of commissioners
have been extended to incorporate responding to the community.
The PCT prospectus proposed by the Department of Health is certainly
one mechanism through which this can be achieved. However, Asthma
UK feels it would be more productive to ensure that commissioners
fulfil their duties to both consult with and respond to patients
and the public in a more systematic and coherent way.
22. Commissioners must be genuinely open
to receiving the views of the wider public, and to acting upon
them. They should be proactive in reaching out to local peopleby
polling, by arranging to meet community members and leaders and
by making connections with the newly established LINks. Responding
to the community should be an integral part of this process: commissioners
can feed back within their own meetings and through LINks, but
they should also make their commitments explicit at the end of
any period of public consultation, and ensure that they report
on how well their plans to meet these commitments are progressing.
This can then inform public consultation in subsequent commissioning
cycles as part of an ongoing relationship between commissioners
and patients.
REFERENCESi Health
Survey for England 2001. Joint Health Surveys Unit, 2003; The
Scottish Health Survey 1998. Joint Health Surveys Unit, 2000;
Census 2001 (Office for National Statistics: ONS).
Donna Covey,
Chief Executive, Asthma UK
10 January 2007
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