80. Evidence submitted by the Patients
Forum (PPI 92)
1. ABOUT THE
PATIENTS FORUM
1.1 The Patients Forum is an independent
network that exists to promote the sharing of ideas, experiences,
and information to enable our members to better inform and influence
policy developments. We work to improve communication and consultation
by engaging with policy developments in a timely way, and by supporting
connections between our members and other key stakeholders.
1.2 Our current membership comprises 46
voluntary, citizen and consumer health organisations (full members)
and 12 statutory, professional, and academic organisations (associate
members).
1.3 We hold six scheduled meetings each
year to provide members with the opportunity to come together,
exchange information, and to debate new policy developments. In
addition, we hold a number of seminars each year on specific issues
that our members feel warrant more detailed discussion. We produce
a newsletter six times a year to help to facilitate the sharing
of information among members, and to identify and highlight key
policy developments from a patient, carer and citizen perspective.
Patients Forum conferences have been well attended in recent years,
with delegates drawn from a wide range of patient, carer and consumer
health groups, and statutory and professional bodies.
1.4 In the past, The Patients Forum has
also conducted more detailed work on specific areas of interest
to our members, for example in commissioning research to examine
patient involvement in the development of National Service Frameworks,
and work in collaboration with the College of Health and the Long-Term
Medical Conditions Alliance on behalf of the Department of Health
on the development of a national patient body which contributed
to the development of the Government's patient and public involvement
strategy. Patient and public involvement in the NHS has been an
issue of ongoing interest to our members.
2. ABOUT THIS
MEMORANDUM
2.1 The Patients Forum is not a campaigning
organisation. We support, rather than represent, our member organisations
and provide a neutral and constructive forum for learning, exchange
and debate. This memorandum therefore does not represent the consensus
view of our members, but rather is presented as what we hope will
be a helpful contribution to the debate.
2.2 Below, we provide some brief thoughts
and reflections in response to the questions that the Committee
has posed.
3. What is the purpose of patient and public
involvement?
3.1 The goal of patient and public involvement
in health should be to give service users, carers and citizens
a greater stake in the NHS and in the broader components of health
that extend beyond the confines of the NHS. It should seek to
provide a mechanism for "non professional" perspectives
to be expressed, and should increase the accountability of health
care to the local community, and to citizens as a whole. In addition,
patient and public involvement can also be seen to have a significant
role in improving the quality of health care services and support.
4. What form of patient and public involvement
is desirable, practical and offers good value for money?
4.1 To be effective, patient and public
involvement in health must be able to reach (a) excluded groups,
and (b) those who are not currently in direct contact with health
care services. Both groups represent a significant challenge for
patient and public involvement.
4.2 People who are described as "hard
to reach" often fail to get involved in the current structures
for patient and public involvement. Creating new structures and
mechanisms for involvement that, for instance, requires attendance
at meetings or participation on a committee, seems to do little
to reach out to these excluded groups.
4.3 Excluded groups frequently require more
support and assistance to have their voices heard. For example,
one of our member organisations, Sign, the national society for
mental health and deafness, has been running a project, funded
by the Department of Health, to help deaf and hard of hearing
people to get appointed to PPI Forums As part of this project
Sign provided training to enable potential deaf PPI Forum members
to feel that they could make a contribution and indeed should
become a PPI forum member. Once appointed the project supports
them to become effective. They believe that more support is needed
to enable these deaf PPI members to continue to make a contribution
and to assist in disseminating the lessons from their experiences.
Frequently deaf PPIF members encountered no budgets for interpreters
and limited understanding in the Forum Support Organisations of
what was required, such as booking communication support for meetings.
Ongoing project evaluation has shown that the presence of deaf,
hard of hearing and other disabled members on PPIFs has helped
to raise the issue of deaf/disability awareness in these structures
and highlighted the need for reasonable adjustments to be made
so to open up the forums to everybody.
4.4 The second group of people—those
not currently in direct contact with health care services—also
pose a challenge for patient and public involvement. These people
may not feel that they have anything to contribute to health care
in their community, or may not even see health care as an issue
of concern to them at all. It is therefore important for whatever
mechanisms are put in place to take steps to reach out to the
wider community and to proactively seek to engage people.
4.5 There is also a question over whether
it is better to organise patient and public involvement around
localities, or around organisations. Some of our members are concerned
that the arrangements for the election of governors for Foundation
Trusts, for instance, fail to provide a system that is representative
of the local community, while purporting to be a more accountable
and democratic system than elsewhere in the NHS. Membership of
Foundation Trusts is low, resulting in a small, unrepresentative
"electorate" which lacks proper accountability to the
wider community. Community based mechanisms for patient and public
involvement in health therefore appear to be a more attractive
option.
5. Why are existing systems for patient and
public involvement being reformed after only three years?
5.1 Patients Forum members have been monitoring
the development of the Government's patient and public involvement
policy over several years. Some believe that the system put in
to place under the 2001 legislation failed because of the lack
of effective support mechanisms provided to individuals at a local
level, and the wide variation in the effectiveness of individual
PPI Forums. The lack of adequate investment in patient and public
involvement meant that the existing systems were always going
to struggle to provide what was expected of them.
5.2 Furthermore, the lack of an effective
national voice for patients meant that issues and concerns at
a local level had no easy way of being passed up for escalation
if needed. This is an essential component of effective patient
and public involvement.
5.3 In recent months, The Patients Forum
has been working closely with other stakeholders in the voluntary
and community sector to explore what sort of "national voice"
for patients, service users, carers and the public is needed.
This work has been driven by a desire to increase the effectiveness
of the patient and citizen voice in the policy making process.
Baroness Morgan of Drefelin has been chairing a working group
made up of voluntary and community sector organisations to explore
how there could be a more systematic approach to involving patients,
service users and the public in policy development. That group
has been working to agree the principles that should underpin
the development of an independent national voice for service users,
patients and carers to influence policy across health and social
care, and to investigate options to establish a mechanism that
represents that independent national voice. In the past few months,
the group has been testing a proposition with the wider voluntary
and community sector to refine the proposal that it has been developing.
5.4 Although the work of this group is being
driven by the voluntary sector itself, and is entirely independent
of government, we hope that the Department of Health will be supportive
of the proposal as it develops, particularly as the proposal will
be based on what organisations working with or representing patients,
carers, service users and citizens recognise is needed at a national
level.
6. How should LINks be designed, including:
— Remit and level of independence.
— Membership and appointments.
— Relations with local health Trusts.
6.1 Some of our members are concerned about
the prospect of local variability in the new system. Where there
are few community development organisations in a locality, there
is only a limited prospect for a meaningful LINks to emerge. While
it is vital for LINks to retain their independence, it is also
vital for the voluntary sector locally to be properly funded and
supported in order to support the development of LINks. The Government
will also need to address the potential conflict of interest brought
about by the likelihood that some voluntary sector organisations
that are providing services under contract to the NHS or local
councils would also be eligible for membership of LINks.
6.2 In terms of national coordination, it
is essential for individual LINks to have a mechanism by which
issues can be coordinated regionally and, if necessary, escalated
to a national level. It is also important for there to be a mechanism
that allows the priorities and concerns of local LINks to be examined
nationally to provide policy and decision makers at a national
level with the insight of local service delivery from a patient,
service user and citizen perspective. There will also be a need
to consider what sort of national standards for LINks will be
necessary to maintain an adequate quality of participation in
all areas.
6.3 As mentioned above, the Patients Forum
has also been working with other stakeholders to explore what
sort of "national voice" is needed to more effectively
reflect the patient perspective in to national policy making.
This is an issue that we feel is in need of much greater exploration,
and we would encourage the Committee to explore this issue in
greater detail.
7. How should LINks relate to and avoid overlap
with:
— Local Authority structures including
Overview and Scrutiny Committees.
— Foundation Trust boards and Members
Councils.
— Inspectorates including the Healthcare
Commission.
— Formal and informal complaints procedures.
7.1 Some of our members have expressed a
view that the Government's map of patient and public involvement
mechanisms is becoming increasingly complex and difficult to understand.
It is obviously important that LINks are able to work effectively
with the other components of the Government's patient and public
involvement system. However, it is important for the Government
to be clear about the roles and responsibilities of each component,
and particularly the expectations that they will have of local
citizens in those processes. Thought will also need to be given
how specialist commissioning arrangements can be opened up to
patient and public involvement and made more transparent.
8. 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?
8.1 Consultation needs to take place at
the earliest opportunity, and before any decisions have been taken
locally. It is still too often the case that communities are presented
with a fait accompli, and the NHS simply uses inadequate consultation
mechanisms to effectively rubber-stamp a decision that has effectively
already been taken.
8.2 In undertaking wider public consultation,
it is important to ensure that the formal mechanisms for participation
(such as LINKs, or Foundation Trust membership) are not seen as
substitutes for real and effective engagement. Formal mechanisms
provide an important conduit to the wider community, but are themselves
not sufficient. In undertaking wider public consultation, these
mechanisms should be harnessed to reach out to the wider community.
Real engagement costs money and time, and the NHS must be prepared
to invest in consultation to ensure that the widest possible range
of stakeholders are reached.
Unnati Rennie
The Patients Forum
January 2007
| 
