134. Evidence submitted by Jean Nunn-Price
(PPI 139)
I joined the SW Oxfordshire PPI PCT Forum in
December 2003 and subsequently was elected Chair of the Forum
prior to its being subsumed in Oxfordshire PCT PPI Forum in October
2006. My experience includes working voluntarily both with PPI
Forum colleagues and with the PCT Board, and conducting surveys
of public, patients and voluntary organisations locally to draw
out their concerns and represent them to the PCT.
I attended the SHA Conference on Tuesday 9 January
and I broadly agree with their evidence to the Committee. The
evidence that follows draws upon the SHA evidence to which I and
colleagues contributed. I would be happy to give oral evidence
if required.
What is the purpose of patient and public involvement?
Health Services that involve patients and the
public in planning future provision and that welcome and respond
to feedback on current provision, are more likely to get it right.
I believe democratic accountability is important, and so is real
empowerment of the community in challenging the organisation providing
health services, whether government owned, a voluntary organisation,
or a co-operative and mutual enterprise. The commissioner and
provider of health services need to know that they will be challenged
effectively by the public who are on the receiving end. It is
now accepted that people need to be positively and actively involved
with their own health and this means there should be opportunities
for both collective and individual involvement.
What form of patient and public involvement is
desirable, practical and offers good value for money?
Much more effective publicity needs to be given
to the PPI role, so that everyone, including disadvantaged sections
of the community, can participate. PPI volunteers must be properly
resourced to relate to people with sensory or language difficulties,
people with dementia and those confined to their home or to an
institution. I welcome the proposal that the new LINks will work
with voluntary organisations, as they are more likely to have
developed the right contacts and techniques for two-way communications
with the hard-to-reach sections of the community. But no one voluntary
organisation should be given the power to manage a LINk, as they
have their own vested interests and cannot be seen as independent.
It would be helpful if the Government could
clearly define what it wants the system of PPI to deliver. Without
this there is no means to judge if the system has succeeded or
failed. Once established, if there could be a planned independent
review of the new system in five years time against pre-agreed
outputs, it should have had an opportunity to prove itself.
Where PPI Forums have worked well, it makes
sense to build the new LINks on them, including their means of
administrative support. When Forums were first set up after CHCs
were abolished, there was a steep learning curve for PPI members.
By building on the strong Forums some of the problems of the early
days of PPI could be avoided. A measure of organisational stability
is important where there are so many volunteers involved. It takes
a great deal of time and effort by lay individuals to begin to
understand the NHS. It is particularly important for the PPI organisations
to have a collective memory given the transient nature of many
health organisations and this is largely provided by the employment
of professional support staff.
Why are existing systems for patient and public
involvement being reformed after only three years?
I agree with the SHA who say it's because Ministers
like to give the impression they are doing something, and because
it is now clear that the abolition of English Community Health
Councils was an expensive mistake.
How should LINks be designed, including:
— Remit and level of independence.
— Membership and appointments.
— Relations with local health Trusts.
The remit of LINks should extend beyond health
to its wider determinants, as well as health and social care.
It should be able to drill down to where the decisions are made,
including being involved with the Practice-based Commissioning
process.
If LINks are not perceived to be independent
they will have no credibility. Under the present proposals the
most obvious threat to their independence is their relationship
with the sponsoring local authority, which will be responsible
for managing the contract under which the support staff are to
be employed. It is therefore important that the process of managing
the contract is protected from political interference by establishing
a transparent process and a fixed timetable—eg contracts
should normally last for five years with perhaps a mid-term review,
and any change should be agreed by the LINk, and not just by the
local authority. As an additional safeguard, the contract should
not be awarded to any existing group which enjoys major funding
from the local authority concerned.
The concept of membership of a LINk needs to
be defined, given that there are to be both individuals and organisations
in membership. I hope that all lay people who have any sort of
representative role in the arrangement of health or social care
services in their area would automatically be a member of their
local LINk. The Department of Health envisages a LINk as a network.
It might be necessary to define a core membership in order to
permit democratic decision making. I agree that there should be
a requirement that every person who participates in the work of
a LINk to be normally resident in the area of that LINk (although
of course the work of a LINk may lead to investigation of services
provided for their residents by organisations many miles away).
I should also like to see a one-member-one-vote system for a LINk,
whether the member is an individual or an organisation.
I think that membership should be entirely voluntary
and self selecting as with Forums. This would mean that the collective
voice of a LINk would have more weight than the voices of the
individual members if it could demonstrate wider involvement,
particularly of disadvantaged groups. The response of a LINk to
consultation will be based on the experience and knowledge of
its members. However, there will never be sufficient resources
to involve the wider public and the most disadvantaged people
in every consultation. When LINks make official responses they
should be required to state what processes informed the production
of that response.
Many voluntary organisations will have financial
interests in the provision of services in their area and it is
important that these interests are declared and that these interests
do not contaminate the voices of voluntary organisations representing
their communities. Under previous legislation NHS employees and
contractors were not allowed to be members of CHCs or Patient
Forums. If such a prohibition is to continue then it should probably
extend to any person with a financial interest in the provision
of health or social care services in the area of the LINk. If
the prohibition is abandoned (and even if it's not) there will
need to be a mechanism to register the declaration of interests.
It will be very important that LINks adhere to the Seven Principles
of Public Life established by the Nolan Committee and it will
be necessary to ensure that there is some mechanism for dealing
with complaints about this. There may be lessons to be learnt
from the experience of the Standards Board for England.
LINks will need support from professional staff
with experience in community development and of how the NHS and
social care work. The staff will also need good IT skills. LINks
need to be able to call upon skills training for its volunteer
members to help them perform their PPI roles. It might be helpful
for one organisation to support several LINks, perhaps calling
on specialist organisations to deal with particular aspects of
the work over a wide area. There needs to be organisational stability
and a career structure if highly skilled staff are to move into
this work. The staff should be accountable to the LINks whose
members should be involved in any appointments.
I agree that funding should be directly related
to population and not weighted for deprivation, rurality or any
other factor. If there is a national budget of say £25 million
for the population of England that works out as approximately
50 pence per head per year. Such a simple formula would make it
easy to see whether the money is reaching its intended destination.
If specific funding provision is made for particular sorts of
deprivation or activity then this should be provided separately.
Providers or commissioners should be allowed to pay LINks to conduct
specific consultations or other projects on their behalf just
as they often pay freelance consultants now, although the independence
of the LINK should not be compromised. As an example, in our SW
Oxfordshire Forum, we co-operated with the PCT in conducting "patient
experience" and "food quality" surveys of patients
in intermediate care after they had done their own survey, as
an independent check (without payment).
LINks should have some statutory powers over
and above the powers available to the public in general. In particular
each LINk should have access to the detailed terms of any contract
for the provision of health and care services to people in its
area. Commercial confidentiality can be safeguarded by a provision
making commercially sensitive information subject to confidentiality
for a limited period. Nominated LINk representatives should have
rights of access to health providers premises just as Forums do
now.
If a national and regional organisation structure
is set up to support LINks, then they must be answerable to the
local LINks, and not the other way around. Members of LINks need
to be enabled and encouraged to communicate with each other across
the country so that specific wider issues can be addressed.
How should LINks relate to and avoid overlap with:
Local Authority structures including Overview and
Scrutiny Committees
Overview and Scrutiny Committees' effectiveness
in relation to health varies very widely according to local political
and geographical circumstances. I agree that there is potential
for LINks and Scrutiny Committees to work together constructively,
as we do in Oxfordshire. However in some local authorities the
Scrutiny Committee is incapable of providing an effective challenge
to service provision of indifferent quality. In such cases the
LINks will need extra support.
Foundation Trust boards and Members Councils
As yet the impact of the democratic arrangements
for Foundation Hospitals is difficult to assess. There is clearly
potential for using those mechanisms to improve consultation and
involvement of patients with hospitals and this may be useful
for the relatively small number of people whose care is delivered
primarily by a hospital. I hope that Members Councils would relate
to their local LINk. However, I agree that the central political
problem in health is the excessive political power and visibility
of hospitals, particularly acute hospitals, as opposed to the
invisibility of primary and community services.
Inspectorates including the Healthcare Commission
The efforts the Healthcare Commission and CSCI
have made to date to involve patients in inspection arrangements
are very encouraging and merit further development. The Commission
could be a powerful ally in the development of involvement and
it would be good if this role were strengthened. LINks should
be recognised as working alongside the professionals in providing
lay members for formal visits and inspections.
Formal and informal complaints procedures
The separation of complaints work from the work
of Patient Forums has been a source of weakness as compared to
the regime of the best CHCs where complaints contributed to a
detailed picture of the performance of local health services.
I understand that there are concerns about the confidentiality
of complaints procedures but some mechanism must be devised to
ensure that local LINks (or possibly some designated committee
of a LINk operating on a confidential basis) have access to information
about complaints which is sufficiently detailed to enable LINks
to know which specific services give rise to complaints. There
may also be a role for LINks to protect patients who complain
as there are still widespread allegations of victimisation.
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?
The proposed amendments to what is now section
242 of the National Health Service Act 2006 appear to envisage
much more general consultation than has previously been required,
and that is welcomed. I agree that decisions about the arrangements
for consultation under section 242 should be made locally in conjunction
with the local LINk which could take into account a wide range
of factors, including the capacity of local communities to respond
and the relative significance of various proposals. Consultation,
to be effective, needs to take place much earlier—while
the consideration of possible options is taking place. Those involved
in their local LINk should not be surprised by the announcement
of any proposal for substantial changes of service in their local
area because they will have been involved at an early stage.
Jean Nunn-Price
January 2007
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