Conclusions and recommendations
1. Patient
and public involvement in the health service happens in many different
ways, of which patient and public involvement structures such
as PPIfs are only one. There is an important distinction to be
made between the involvement of patients and of the public which
have tended to be confused. We agree with Harry Cayton's distinction
(see para 10) between patient and public involvement. Current
or recent NHS patients are likely to bring different perspectives
to bear from those held by the general public. All these distinctions
should be taken into account. (Paragraph 32)
2. The purpose of
public involvement is also often confused and conflated. Two main
purposes need to be distinguished: improving the design and provision
of services and increasing accountability. In a publicly funded
service, patients and the public are in a sense the NHS's shareholders
as well as customers and their views on larger decisions about
spending priorities and service design must also be taken into
account. (Paragraph 33)
3. Patient and public
involvement should be part of every NHS organisation's core business.
As patient choice becomes established this will become even more
crucial to service provider organisations' success. However, a
separate, independent, patient and public involvement mechanism
provides an important back-up until patient and public involvement
is better established within NHS organisations. Any independent
patient and public involvement structure should attend to the
differing needs and views of both NHS patients and the wider public.
(Paragraph 34)
4. Several witnesses
argued that PPIfs should remain. They may have a small, unrepresentative
membership, but this could be improved and, in any case, there
was not a large number of people willing to do work of this type.
Moreover, they could develop to take account of changing circumstances.
The balance of evidence suggests that these witnesses may be right.
Once again the Government has abolished an institution a few years
after its establishment. We are concerned that the Government
has taken insufficient account of the cost of change. Abolishing
established structures and creating new and untested institutions
has not proved successful in recent years. (Paragraph 97)
5. We welcome the
'early adopter' projects, but we are concerned that they are taking
place after the Bill has been published which means that LINks
cannot be evidence-based. We are also concerned that the Department
is drawing up guidance before 'early adopter' projects have been
evaluated. (Paragraph 111)
6. The 'early adopter'
projects appear less an objective trial than a discussion with
stakeholders, and a key point—what can be expected from
Hosts—is not being addressed. We recommend that there should
be full trials of LINks to assess practical requirements for running
them. (Paragraph 112)
7. There is no fixed
budget for each 'early adopter'. At Medway money is being supplied
as it is needed. This is symptomatic of the Department's failure
to focus on what LINks will realistically be able to accomplish
with the resources available to them. We recommend that the 'early
adopters' should be given the same budget LINks will have once
they start so that it is possible to establish what can be achieved
with the money that will be available. (Paragraph 113)
8. There are serious
concerns about both of the models for LINks. It is feared that
under the 'PPIf Plus' model, the existing weaknesses of PPIfs
would remain. We found some of the arguments for the 'network'
model vague and woolly. This model would lack the means to hold
the NHS to account, might duplicate existing networks and tend
to give greater weight to existing pressure groups rather than
those who are not organised such as healthy working people. (Paragraph
150)
9. The Department's
present view of LINks may produce not the best of both models
but the worst. There are so many things LINks could do. There
is a danger that LINks will attempt to take on far too much and
undertake work which is best done by others. We are concerned
that LINks will duplicate the work of foundation trust Boards
of Governors if they focus on service delivery. There is a great
deal of high quality information relating to the health service
and public attitudes to it. There is a risk that LINks will waste
time duplicating this research. There is also a risk that LINks
will spend time and money undertaking detailed research that should
be the responsibility of the NHS and social care commissioners.
(Paragraph 151)
10. The lack of clarity
about LINks role and structure is likely to create confusion and
inactivity. This may mean that LINks will have difficulty deciding
what they are going to do and how to do it and as a result lose
the interest of volunteers. This would be particularly unfortunate
at a time when significant change is occurring in the NHS and
social care services. (Paragraph 152)
11. The Minister told
us that the abolition of CPPIH would result in one third more
money for 'front line' spending by LINks. However, we note that
much of the money will be used to replace functions currently
carried out on behalf of forums by CPPIH. She also argued that
there would be significant economies of scale under the new LINks
arrangements, but we are not convinced this is so. (Paragraph
168)
12. PPIfs believe
that there is not enough money to support them as their members
think is necessary. LINks are being asked to carry out significantly
more work. It is a matter of serious concern that the Department
has not taken the budget LINks will have into account when deciding
their remit and function. The Department will need to ensure that
LINks' remit takes account of the available funding. Otherwise
there is a risk, as CPPIH fears, that LINks are "being set
up to fail because of the level of resources". (Paragraph
169)
13. We welcome the
Department's decision not to prescribe in detail how LINks should
operate but a clear direction is required in relation to what
LINks should do. This the Department has failed to give. LINks
will have limited resources and will have to prioritise. Clarity
about what LINks should be doing will reduce confusion, allow
LINks to produce useful work faster and make it easier for Local
Authorities and Hosts. The Department must issue guidance to clarify
what LINks priorities should be. In its guidance the Department
must also make it clear to LINks that they should avoid duplicating
the work of other bodies. (Paragraph 184)
14. The Committee
supports the Department's aim of increasing patient and public
involvement in commissioning decisions. However, if volunteers
are given a free choice they are unlikely to make commissioning
a priority as they prefer to concentrate on the quality of the
services which NHS bodies provide. This would duplicate the work
of foundation trust Boards of Governors. If the Department wishes
LINks to focus on commissioning it must indicate how it expects
this to happen and what steps it proposes to take to make it happen.
(Paragraph 185)
15. We recommend that
each LINk discuss with its local NHS bodies and social care commissioners
its priorities. The Department should issue guidance to clarify
what the respective roles of LINks, the NHS and social care commissioners
should be. We further recommend that the guidance indicate that
LINks should be aware of the cost and difficulties of some of
the tasks they might seek to undertake, such as reaching out to
'unheard groups' (eg. healthy working people, non-English speakers,
homeless people), undertaking research and compiling scientifically
rigorous data. LINks should be encouraged to ask NHS bodies and
social care commissioners to carry out such work and to hold them
to account for doing it. A large amount of data is already collected
on a range of views. The Host should be responsible for making
LINks aware of the existence of this data and helping them make
use of it. (Paragraph 186)
16. We hope that the
Department is correct and that LINks will successfully attract
many new members. However, we are concerned that while there may
be large numbers of people who will become involved in some campaigns
related to the health service, such as hospital closures, few
are prepared to make a major commitment to patient and public
involvement. Many of these people are members of PPIfs. The Department
should take steps to ensure that in this period of uncertainty
they do not cease to be involved in patient and public involvement.
(Paragraph 196)
17. It is vital that
LINks have the same right of entry to places where NHS care is
carried out as PPIfs have at present. There must be no diminution
of the powers of PPIfs. LINks should not have to write to the
regulator and wait for a reply. Ideally, LINks should have the
same rights in relation to social care premises with due regard
for the needs and wishes of the residents. (Paragraph 202)
18. LINks must have
a higher profile with the public than PPIfs. Advertising might
be one way to achieve this; on the other hand, advertising could
be a waste of LINks' limited budgets. We recommend that the National
Centre for Involvement should prepare best practice guidance on
advertising and publicity which LINks could request if they thought
it helpful. (Paragraph 208)
19. We agree with
the Minister that if LINks have a large membership, not all members
can be trained. However, it will be crucial that at least a core
of people in each LINk is trained to ensure they have the skills
to carry out their task. The provision of training centrally with
an appropriate qualification for those who completed the course
could be attractive to volunteers. (Paragraph 212)
20. We are concerned
about social care providers acting as Hosts. It will be difficult
for contracts with Hosts to be drawn up to avoid conflicts of
interest. We were not satisfied with the Minister's response to
our questions on this issue. Unless the Department can provide
a satisfactory way to avoid actual and perceived conflicts of
interest, social care providers should not act as Hosts. (Paragraph
216)
21. Witnesses welcomed
the fact that Local Authorities and Hosts will not control LINks.
However we are concerned that the lines of accountability are
confused. Were a LINk to be dysfunctional, the Host would be powerless
to change it, and the Local Authority would only be able to hold
the Host to account. The Department needs to clarify how LINks,
as well as Hosts, are to be held to account. (Paragraph 220)
22. We welcome the
Government's decision to allow LINks to set up their own national
body. Unfortunately, this means that there will be no national
body to support and guide LINks when they are first established.
We also welcome the Government's decision as an interim measure
to give this role and that of diffusing best practice to the National
Centre for Involvement. The National Centre must not direct LINks
but supply assistance and advice on request. We recommend that
the Centre be provided with additional funds to allow it to undertake
this task. We also recommend that a national website be set up
to allow LINks to share best practice. (Paragraph 229)
23. Change is particularly
unsettling for voluntary bodies and, for whatever reasons, it
is likely to be viewed as criticism of their work. We recommend
that LINks be given a sufficient period to establish themselves
before any further changes are made. (Paragraph 231)
24. In theory there
is a good system for consulting about important local proposals
for change. In practice, there is much frustration and disappointment.
Too often it seems to the public that decisions have been made
before the consultation takes place. Too often NHS bodies have
sought to avoid consultation under Section 11 about major issues.
Unfortunately the Department of Health has supported those NHS
organisations in trying to limit the scope of Section 11. (Paragraph
271)
25. The Government
has proposed changes to clarify when consultation should take
place. We are not convinced that this will strengthen rather than
weaken the consultation process. Rather than amend the law it
may be better to make the existing legislation work by approaching
it in the spirit of the statutory guidance in Strengthening
Accountability. There is good practice in the NHS. It should
be followed. (Paragraph 272)
26. The Secretary
of State's interventions following extensive local consultations
threatens to undermine public confidence in the consultation procedure
system. We are also concerned that few referrals from Overview
and Scrutiny Committees are subsequently referred by her to the
Independent Reconfiguration Panel. We recommend that the Secretary
of State refer all OSC referrals to the Panel. She should also
seek the advice of the Panel before exercising her extensive powers
to intervene in reconfigurations. The Panel is also available
for advice before formal consultation begins and wide use of this
advisory service should help to make formal consultation more
acceptable. (Paragraph 273)
27. It is crucial
that national consultations cannot be open to the accusation of
being 'cosmetic'. However, where patient and public viewpoints
can make a genuine contribution to debate, consultation on national
policy may be valuable both in terms of enhancing accountability
and improving policy making, even if final decisions must ultimately
rest with elected representatives. We have heard that at a national
level patient and public involvement is fragmented and lacking
a coherent strategy; we recommend that the Government should address
this as a priority. (Paragraph 278)
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