129. Evidence submitted by Robert Jones
(PPI 18)
1. What is the purpose of patient and public
involvement?
To involve the public in an understanding of
the way in which services work in society and to contribute to
refining them; to bring public concerns, ambitions and ideas to
the attention of those who run the services and to have a realistic
chance of influencing them.
2. What form of patient and public involvement
is desirable, practical and offers good value for money?
Perhaps the best model might be derived from
looking at what government has done since 2003, and avoiding the
mistakes it made. This is more than a satirical point: the creation
of the CPPIH and numerous forums was a bureaucratic nightmare
and nonsense. Government had so little confidence in the ability
of those it recruited to the Forums that it policed them with
one of the most pettifogging and unpopular quangos that I have
ever known. It sacked the dedicated, professional staff to which
CHCs had enjoyed access, and replaced them with bidders from the
voluntary sector—a system which worked well in some areas,
disastrously in others, owing to the widespread differences in
the quality of voluntary sector staff and the professional standards
available there.
A new system should:
(i) have professional staff to work with
the new bodies which will be created;
(ii) have dedicated office space;
(iii) have the ability to follow through
projects and, ideally, complaints—or at the very least to
receive anonymised data from complaints procedures; and
(iv) have statutory powers that are adequate
but not excessively bureaucratic.
As to whether this will mean "good value
for money", there is no point in having a system of patient
and public involvement if these conditions do not obtain. If the
government is serious about it, therefore, the above are the minimum
standards to which its new system should adhere.
3. Why are existing systems for patient and
public involvement being reformed after only three years?
Because the system brought in under the legislation
creating forums and CPPIH was inadequate and misconceived, arising
as it did from the decision to scrap CHCs without due thought
or, crucially, consultation about what would replace them. The
argument put forward by ministers that the system is changing
because the NHS has changed cuts no ice with forum members, and
lacks all credibility.
4. How should LINks be designed, etc?
(i) Remit and level of independence: If the
LINks are introduced, they should aim to maintain the "critical
friend" approach towards the NHS that has worked reasonably
well. They should be separate from the NHS, and the Local authorities
in whose areas they work. They should have a scrutinising role,
and they should seek to involve user groups and individuals, as
well as marginalised elements in society. There needs to be a
sense of realism however about their capacity to achieve the latter:
"hard to reach" groups may be hard to reach because
they do not want to be reached. It will take more time than volunteers
are likely to have to corral the unwilling into participating
in health decision-making.
(ii) Membership and appointments: There needs
to be a core board, if LINks are to be open organisations, or
scarcely organisations at all, involving a wide range of bodies
and people. Appointments to that board should preferably be made
by elected councillors or at least at as local a level as possible.
(iii) Funding must be adequate for the purpose;
must be ring-fenced; and support should be given by professional,
competent managers recruited and trained for the purpose. The
voluntary sector does not have sufficient professionally competent
people within it to provide the level of service required. Members
of Forums are unlikely to tolerate a repeat of the organised chaos
that has bedevilled their work over the last three years, and
yet the new system requires the expertise they have acquired.
(iv) Areas of focus: These will vary locally
and regionally, but if the LINks are to be based on local authority
areas, ie, principal authority areas, they should relate to and
with the NHS, social services and housing services and organisations
in their LA area. They should also be encouraged to relate with
LINks outside of their areas, to share experiences and concerns.
(v) Statutory Powers: At least a group within
the LINks should have the statutory powers to visit NHS institutions
and premises supplying NHS services. Local authorities, Trust
Boards, and Foundation Trusts should be obliged to consult with
LINks and to include them on key decision-making bodies.
(vi) Relations with local Health Trusts:
LINks should expect to be consulted as of right in the work of
the local Trusts and to have representation on Trust Boards and
main committees. Trusts should be made aware that "consultation"
requires more than having a representative on a board, however,
to nod through change or add credibility to its decisions.
(vii) There should be a national organisation
to which LINks affiliate, and this needs to be adequately funded.
What it does not need to be is a controlling mechanism for the
LINks, or—in short—similar to the CPPIH. It should
act as a clearing house for ideas and a forum for discussion,
and might be constructed along similar lines to ACHCEW, or the
National Housing Federation. It will need to be controlled by
its members so that it does not run the risk of following the
example of the latter and gradually acquiring more powers and
roles for itself.
5. How should LINks relate to and avoid over
lap with
(i) LA structures including Overview and
Scrutiny Committees: There is no evidence that the Forums have
fallen into the overlapping trap, and no reason why the LINks
should do so. An informal relationship should be established between
LINks and OSCs, so that representation may be locally agreed;
but it should be mandatory for the OSC to appoint/accept LINks
representatives, and probably vice versa.
(ii) Foundation Trust Boards and Members'
Councils: A formal relationship should be established at the appropriate
local level; this should not be rigidly prescribed, but there
must be an understanding that representation is mandatory. Again,
overlap is unlikely to be a problem given there is sufficient
legislative framework to establish the responsibilities of the
LINk.
(iii) Inspectorates including the Healthcare
Commission: Overlap is hardly likely to be a problem here; as
to relationships, the Healthcare Commission has an impressive
record of involving Forums in its activities, and most Forum members
are very happy to work with it. We will hope that its work and
approach continues, and that through negotiation and trial, a
relationship will be formed with LINks that will mirror the successful
one that has been formed with Forums.
(iv) Formal and informal complaints procedures:
Since in my experience ICAS and PALS have been wholly ineffective,
and are extremely bad at conveying useful information to Forums,
it would be my hope that they should be abolished. I realise the
government has already indicated that they will continue. I can
only say that I regret this, and believe that the CHC role of
investigating and seeing complaints through, complementing internal
NHS systems and occasionally challenging them, was the right way,
and I deplore the retreat from it. I believe that relations between
LINks and the complaints systems are going to be extremely poor
when members of LINks realise how frail the system of complaints
has become and that the government will face further challenges
on this front in the course of time.
(v) In what circumstances should wider public
consultation (including Section 11 of the H&SC Act 2001) be
carried out, and what form should this take? If the LINks are
to have anything like the scope envisaged for them, they could
be the main consultee body. Given that the majority of people
will never be interested or able to be involved in them, however,
the system which presently exists to enable consultation ought
to be maintained, provided that it is extended to cover nationally
determined changes in service provision as well as more local
decisions.
Roberet Jones [comments
are made as as individual]
Vice Chairman, Isle of Wight PPI Forum
3 January 2007
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