60. Evidence submitted by the Moore Adamson
Craig Partnership (PPI 39)
EXECUTIVE SUMMARY
Our evidence concentrates on the form a LINks
should take and stresses the importance in PPI work of building
organisations around the volunteers and not trying to fit the
people into structures. The memorandum argues for and outlines
the principal provisions of a new form of contract between the
LINks and the individuals who come forward to serve on the body.
THE MOORE
ADAMSON CRAIG
PARTNERSHIP—SPECIALISTS
IN PUBLIC
AND PATIENT
INVOLVEMENT
The M-A-C Partners Valerie Moore, Colin Adamson
and Andrew Craig have worked with patient and user representatives
for the past five years and were pioneers in training for this
role in partnership with the National Consumer Council. We have
also evaluated the success of aspects of PPI programmes and been
involved in other health-related initiatives such as Governors
in Foundation Trusts. Our approach also draws our experience with
other consumer representative organisations in the water and rail
industries.
M.A.C aims and approach
To enable user representatives and those who
manage and support them in their efforts to develop a coherent
and effective approach to their work. We help them:
— Define "representation"/"representative".
— Identify issues and concerns
of those represented.
— Identify strengths and weaknesses
of their organisations or as individuals.
— Formulate goals and objectives.
— To evaluate their efforts and
to recognise success.
PPI IN HEALTH:
A LEGACY OF
DISAPPOINTMENT
We believe it is very important to make the
new PPI systems and processes work well this time round. In the
past few years we have seen growing cynicism and in some cases
real anger amongst those individuals who have given time and energy
to Community Health Councils (CHCs) and Patient and Public Involvement
Forums (PPIFs). In many cases this is matched by a weariness amongst
even the most forward-looking service providers and commissioners
who feel their organisations and their patients and the public
have gained little from the shift from CHCs to Patient Forums.
Some complain that their work with the public has been hampered
and weakened, partly by repeated structural changes but more importantly
by the alienation and subsequent disappearance of individuals
and organisations with whom they previously had positive working
relationships.
RISKS OF
GETTING IT
WRONG AGAIN
The risks of getting it wrong this time are
therefore very high. It is not only a question of making good
use of public funds. It is also a question of resuscitating good
will and developing positive new relationships. Our work over
the past five years in the patient and public involvement field
has shown us that the public in general and patients in particular
are passionately committed to the idea of a publicly provided
health service. They are strongly supportive of their local healthcare
institutions at every level and the people who work within them.
They want to be involved, but only in things which they see as
being relevant to them. Where they have something to say they
want to be listened to. They know they are really being listened
to when they can see that their feedback has had an impact on
the things that matter to them.
A DEFINITION OF
INDEPENDENCE
It is essential that the new LINks bodies are
and are seen to be independent of providers and commissioners
of services. But they will also need to help their members (whether
individuals or organisations) to have the capacity, knowledge
and skills to secure real influence. Many of the failures of Public
and Patient Involvement Forums were related to inadequate support
both in terms of administration and in terms of expert guidance.
We would hope that LINks might end up looking not dissimilar to
the very best of the old CHCs with an expert and professional
staff supporting the membership.
RADICAL AND
INNOVATIVE APPROACH
TO SUPPORT
PUBLIC AND
PATIENT REPRESENTATIVES
We feel there is an opportunity for a radical
new approach in this contractual area that starts not with the
definition of the appropriate institutional relationships but
with creating the space and the environment that will nurture
and sustain the individual relationships.
As our initial remarks make clear, the people
that suffered from the uncertainties and failures of the past
were principally the volunteers, those members of the public,
patients and carers who took part and responded to invitations
to join in. (This is not to ignore the untimely job losses of
CHC staff but their status as employed people ensured that they
were not left wholly stranded.)
FIRST PRIORITY
TO INSPIRE,
ATTRACT AND
RETAIN
We therefore see the first priority to create
the right conditions or contract to re-inspire, attract and retain
the new corps of patient and public participants to resuscitate
that goodwill and develop those new relationships.
This person-centred LINks contract would address
the following issues:
— A right of audience and to be
heard and involved.
— Financial and other barriers
to involvement.
— The availability of incentives
including payment.
— The amount of training to be
given to fulfil the role and to use all modern means of communication
and association to do so.
— Full technical support in modern
communication channels especially low cost communications.
— The availability of professional
support at the times it is needed—eg weekend and evenings
as well as daytime—a 0900 to 2100h day.
— Support to include access to
research studies and the funds and training to commission their
own work.
— The ethical and moral basis
for the work and a code of expected conduct to be observed by
all parties to the contract.
— The basis for appraisal—how
often and by whom and to what end?
— The degree of protection from
legal action eg libel.
— Accurate statement of the minimum/maximum
time to be devoted to this work and the length of any engagement.
— A means whereby volunteers can
negotiate different terms of engagement and of reference to suit
their (changed).
— To have the power either to
dismiss other contractors and service providers or vary their
contracts if they not delivering the service demanded.
— The power to move the closure
of the LINks if they are not performing and to allow others to
bring such a motion so a fresh start can be made. We are not creating
institutions that will last for ever - we are creating means to
ends which if they do not deliver, we can close down and try something
else.
If a organisation tendering to set up a LINks
shows that it can devise a contract along these lines that can
be incorporated into the `main' host organisation contract and
budget, then it is a serious contender to run a LINk regardless
of whether it is a for-profit or not-for-profit organisation.
Valerie Moore, Colin Adamson, Andrew Craig
The Moore Adamson Craig Partnership
5 January 2007
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