Examination of Witnesses (Questions 60-79)
MR HARRY
CAYTON AND
MR MEREDITH
VIVIAN
1 FEBRUARY 2007
Q60 Sandra Gidley: You seem to be
hinting that there is a feeling within the NHS or Department of
Health that perhaps the forums do not represent the public very
well?
Mr Vivian: If that was what came
across I did not mean to say it. What I am saying is that it is
very difficult to represent 400 organisations by saying simply
they are good or bad. I have to say that to expect a small number
of people to be able to hear from a large number of people and
easily represent those views is a difficult job, and we think
it is right to make that job rather more relevant at local level.
Q61 Dr Stoate: Not for the first
time and I am sure not for the last I am confused about commissioning.
You have made quite clear how you see the role of LINks in overseeing
commissioning decisions, but if you include the way that things
are supposedly going with practice-based commissioning there is
no need for practices to have patient participation groups; indeed,
the majority of them do not. How exactly will GP-based decisions,
even if they are locality-based rather than just practice-based,
take any account whatever of what LINks are saying? There does
not seem to me to be any mechanism whereby LINks can get themselves
involved in decisions that could quite legitimately be made at
practice level by a group of GPs and others in all good faith
but with absolutely no necessity for them to listen to anything
LINks are saying?
Mr Cayton: I am sure you do not
suggest that GPs would ever make commissioning decisions that
were not in their patients' interests.
Q62 Dr Stoate: Not deliberately.
Mr Cayton: You raise a good point,
but the overall plans made by GPs will have to be approved through
the PCTs. The overall strategy on commissioning, even at practice
level, will be overseen by the PCTs.
Q63 Dr Stoate: Are you saying that
the practice can make a decision in the patient's best interests
as it sees it and the PCT can then say that it is not doing that?
Mr Cayton: In terms of the overall
strategy, what powers are you taking? What decisions will be delegated
down to practice level and so on? This is a dynamic proposal.
LINks will be immediately gathering information from the patient
participation group in that practice, if it has one, and feeding
it up to say it is not happy. It may well be you are right that
at the moment they will not have statutory power to go in and
stop the practice from behaving in a certain way, but if they
start to raise that issue with the practice itself and with the
PCT, if they ultimately raise it with the OSC, it seems to me
that, given that dynamic and assuming the PCT and practice are
acting with good intent and with the desire to work with and for
their patients, they will find it difficult to persist in a practice
that has such lack of appeal to their own patients.
Q64 Dr Stoate: That all sounds fine,
but first it does not assume that there will be any coercive power;
it will be a persuasive power rather than anything else. Second,
it is difficult enough to get GPs involved in the commissioning
process. How realistic is it to get ordinary members of the public
involved at that level to make any real difference?
Mr Cayton: First, I do not particularly
want coercion because I am interested in patient engagement, involvement
and partnership in the health service. I am not really interested
in confrontation, opposition and yarboo stuff around health. I
do not believe that that is at all the point of the exercise.
Second, I have attended a lot of patient participation groups
in practices and many have a constructive engagement with their
GPs. There is bound to be variability when we give local responsibility
to people. There will be variability in the commitment, far-sightedness
and imagination of GPs and also in the quality of patient participation
groups and LINks, but I argue that unless we allow these mechanisms
to be created and have incentives of various kinds in the system
to achieve good quality we will not develop anything like the
kind of dynamic dialogue that we would like to happen.
Q65 Dr Stoate: You quite rightly
say that patient participation groups are extremely well developed
in some parts of the country and have a very persuasive effect
on practices, and that is as it should be; in other words, there
are already mechanisms for vocal groups of patients and others
to get involved in the process via PCTs and practices directly.
What will LINks add that currently does not exist?
Mr Cayton: They add a voice to
the patient participation group because that group in a practice
can be a member of the LINk. It can have a direct part to play
in the LINk and can share its experiences, good and bad, with
other organisations. It gives the patient participation group
the ability through the LINk to speak with a united voice to other
practices that have some experience of commissioning across the
whole system. We talk about networks. All we are doing is helping
to create networks where people are empowered. We know from all
sorts of community action that little groups of people get together
and the more they do that and form larger groups the more influential
and effective they become, and that is how community action works.
Q66 Chairman: Mr Vivian and three
Members of the Committee were in Central Hall Westminster earlier
this week. Somebody stood up to say that in their PCT they had
members of the current PPI forum sitting in on the individual
decision-making committees about what services should be provided
and how they should be provided in that particular locality. Do
you think that is likely to change?
Mr Vivian: It is very interesting,
because that situation has absolutely nothing to do with the legislation
or functions of the patient forums. There is nothing in the patient
forum legislation that provides for that. What encourages that
is section 11 of the Health and Social Care Act which says that
NHS organisations have a duty to involve patients and the public
in decisions that affect the operation of services. That is nothing
to do with forums; that is the NHS doing what it is supposed to
do.
Q67 Chairman: I suppose the real
question is whether anybody can now look round and say that because
of the legislation that is currently going through Parliament
the attitude of the National Health Service will change, if it
is the PCT itself that has driven that model as opposed to the
PPI forum.
Mr Vivian: It is not the forum
that is driving that model; it is the NHS, so I do not believe
there is any change. My guess is that LINks will probably support
that way of working even more effectively because they will have
a far wider range of people from which it can draw that kind of
additional activity. I do not know how many people have said in
their responses to you that so much is expected of forum members
and they spend so much time doing what they have to do. If there
are seven or eight people in a forum that is entirely understandable.
If a LINk is made up of a much wider set of local people that
resource can be deployed much more widely.
Q68 Mr Amess: The Healthcare Commission
has demonstrated that patient and public involvement is a very
expensive exercise. What is your answer to the charge that LINks
are a way of doing the job on the cheap by using volunteers?
Mr Cayton: I think that to say
that volunteers are "cheap" is a terrible thing to say.
I believe that volunteers are part of our national culture. Volunteering
is a very important part of culture in our society. Voluntary
organisations are run by thousands of volunteers. I had 27,000
volunteers when I was with the Alzheimer's Society, and Diabetes
UK has over 160,000 members. People serve on school governing
bodies. What we are trying to do is take the money we have and
redirect it so that all of it goes down to local level. Local
people can use it within the frameworks that we want to set for
good governance and financial management. There is no reason why
a successful link in the future cannot start to raise funds for
itself locally, for instance by being commissioned to do work
on behalf of the community. If the social services, the local
authority and PCT want specific pieces of work done in terms of,
say, surveying particular communities or engaging with them on
a particular issue, they can pay extra to do that. We are creating
a permissive, not a prescriptive, model. We deliberately did not
suggest that LINks were called LINks for health and social care
because I would like to see community transport involved in it,
for example. Transport is a major issue for many people who use
health and social care, particularly those with disabilities.
I want to see LINks opening up the whole question within a particular
local authority of how to bring together health, social care,
transport planning and all the issues that affect people's wellbeing.
Mr Amess: I think you answered that very
silly question extremely well.
Q69 Jim Dowd: The memorandum that
you submitted to us alludes to a point referred to a few moments
ago. It says: "It is important to note that the term `membership
of a LINk' may be misleading. It will be possible, indeed sometimes
desirable, for people to feed their views and experiences into
a LINk without seeing themselves as `members'." We have received
evidence from other bodies highlighting the role of the patient
representative. I accept that sometimes the representatives are
no more representative than of one patient, but is this a formal
attempt to reduce or eliminate the previous role of patient representatives?
Mr Vivian: We want LINks to be
able to capture a wide range of views and experiences. I can do
that by, for example, having a website by which people can feed
their views into the system. A LINk can capture that and weigh
it up; it can receive feedback from local panels and complaints
made to local services. People can fill in comment cards and take
part in public meetings, forums and so forth. There is a very
large array of mechanisms by which people can feed in their views.
That does not make them members of something; they are contributors
to and participants in the exercise. Some people will want to
do something specific. They may want to visit an NHS facility
and assess the range and nature of the quality of services provided
there. Others may want to sit on PCT decision-making boards or
whatever. There are lots of opportunities for people to become
engaged in it. They may still not see themselves as members of
a LINk but certainly the people who are engaging in LINk activities.
At the top of this pyramid of involvement we see a need for some
sort of governance arrangements whereby a smaller core group of
people says that they are the ones who essentially will be stewards
of the particular entity or organisation. It is they who will
be responsible for how the money is spent and decisions are taken
about staff and so forth. That is why we do not like to talk about
membership. People's interest is pertinent to their own degree
of energy, enthusiasm and commitment. Some want to be members;
some want to be participants, and so forth. That is why we talk
in those terms.
Mr Cayton: We have tried very
hard to counteract this view, but I put on record that there is
every desire on our part to have as many members of existing patient
forums who wish to be actively involved in LINks to be so involved.
We have no desire for that expertise and commitment to be lost
and we see no reason why they should not play a significant role
in LINks. The nine pilot sites that we are looking at are being
built from existing patient forums and practices. I can understand
the pain and sense of rejection of some patient forum members,
but it is absolutely untrue that we do not want them to be part
of the new system if they choose to be.
Q70 Jim Dowd: I understand that.
Mr Vivian, you said that you did not want to talk in terms of
membership of LINks, but the paragraph prior to the one I just
quoted starts, "We hope that the membership of LINks should
be locally determined rather than centrally so." There is
an ambiguity here which I cannot quite get to the bottom of. What
do you see as the membership of LINks? Whom do you see as being
involved hopefully at the core of LINks?
Mr Vivian: I think that is the
nub of it and that is not for the Department of Health to say.
It is for local people themselves to decide.
Q71 Jim Dowd: Do you not have an
optimum view?
Mr Vivian: Yes. We would definitely
like to have people in this governance arrangement, if we call
it that, who are objective, are able to commit time and energy
to it and have good relationships and are able to build partnerships
with other organisations, VCS and public sector organisations.
We want people who are able to appreciate that there are many
views and ways to ensure that through good process those views
can be collected and represented appropriately. We want people
who are able to talk objectively on behalf of other people without
necessarily grinding their own axe. Those are the sorts of people
that I have in my mind's eye, but I do not think that we can frame
legislation that will deliver all of that. We cannot say in the
Bill that the people who sit on top of this organisation must
be of this type. Indeed, how can we tell from here? That is the
nub of the whole issue: we want it to be locally determined.
Mr Cayton: To elaborate and perhaps
clarify the briefing, we expect LINks to have members and for
those members to be drawn from committed individuals and local
community organisations. One may well have a governance structure
that includes an electoral college of which local organisations
like MIND, MENCAP or community transport organisations may be
members, as would committed individuals. One then has a governance
system that allows the appropriate election and appointment of
a board, but what we tried to say in the briefing was that those
people would not be the only ones who had a voice through the
LINk. One would be able to have a voice through the LINk even
if one was not strictly speaking a member. The LINk would talk
to wider communities. Clearly, if one was in MENCAP one would
be talking to its clients and families, even though those individuals
themselves would not be members of the LINk.
Q72 Chairman: At the moment it seems
clear that large and vocal sections of the public are opposed
to reconfiguration. Earlier Mr Amess mentioned A&Es, but there
is also the maternity service in Greater Manchester which has
been in the public domain for the past few months. One of the
issues in that regard is the improvement in services particularly
for premature babies if the reconfiguration goes ahead versus
public opinion in some parts of Greater Manchester that it should
not do so on the basis that they want to retain that particular
establishment in their particular geographical area. What weight
can one expect people to have in relation to this type of debate?
Mr Cayton: It is very difficult,
is it not? We know that hospitals in particular are iconic in
communities. Dr Taylor is a living example of how iconic they
can be. It seems to me that the handling of reconfiguration debates
is an area where we still lack expertise and an understanding
of how to reach what I call a socially sustainable decision, by
which I mean one with which not everyone agrees but everyone can
understand. There are examples of where that has been done well,
but when one launches into rapid periods of change with inadequate
sharing of information with the public one gets a reaction. I
believe that we do that extraordinarily badly very often. Because
the NHS and hospitals in particular are emotionally symbolic within
communities they tend to get a high level of emotional response
in planning. There was some discussion about this earlier. I hope
that the NHS Centre for Involvement will help us with some of
it. There is some research in both Canada and Australia about
the particular kinds of methodologies for collecting voices, whether
it is from general questionnaires down to citizens' juries and
the importance of using the right methodology for the question
one asks. To go back to the discussion about citizens' juries,
they are good only at trying to deal with highly complex ethical
policy issues; they are not good at dealing with representative
views, whereas questionnaires when well conducted are much better
in dealing with that. I believe that there are five stages to
good public involvement. The first is to go where the people are;
the second is to share all one's knowledge with them. Usually,
people are suspicious and distrustful of consultation when they
think the other side is holding its cards to its chest. One needs
to put out all the information and be honest about performance
and say why something is not safe and something else would be
safer; one needs to say what one is doing about public transport
and talk seriously about the costs. One needs to share with the
public all the information that one has as professionals, listen
to them, act and finally tell them what one has done and why.
If people try to rush that process, or miss out part of it, or
not take any part of it seriously, it will not work.
Q73 Chairman: Are there any no-go
areas for public consultation in relation to the shape or reconfiguration
of local health services? Is there any cut-off in any of this?
Mr Cayton: From my perspective,
I presume that while we have a National Health Service there will
always be powers that must be reserved to ministers either to
deal with dilemmas where local resolution has not been possible
or to set an overall strategy particularly in relation to finance,
standards of provision or the range of things that the service
must provide in a particular area. I refer to the whole business
of setting standards and having national service frameworks. Clearly,
those things need to be done nationally.
Q74 Chairman: What would happen if
a clinical case had been made and agreed upon but there was still
vocal opinion against the closure of the local A&E or maternity
unit? Would that still be a matter for a political decision?
Mr Cayton: I express an entirely
personal view here. As an exponent of patient, public and community
involvement if the community really understands the choice it
is making local politicians should take that seriously into account.
That should include the local managers of the health service.
Q75 Chairman: I remind you that you
have the same protection that we have in terms of your evidence
to the Committee. I take this matter quite seriously. It seems
to me that there are some contradictions in this. We as individuals
can have a voice if something is happening locally and then we
can have a voice down here. There is a mechanism whereby even
decisions that are taken locally can be referrednot all
of them have to beif the Secretary of State and those lobbying
him feel that they are uncomfortable ones. This is a bit of an
uncomfortable situation in terms of the reconfiguration of health
services, is it not?
Mr Vivian: I want to pick up that
very issue. Local people have locally elected representatives
who have been given specific powers to review and scrutinise the
planning, provision and operation of services. The overview and
scrutiny committees have the power to inquire about the nature
of services, the change of provision and whether or not it is
in the interests of local people. Therefore, people do have local
representatives, and indeed the scrutiny committees have power
to refer matters to the Secretary of State if they do not believe
that the change is in the interests of the health service. The
Secretary of State also has the ability to seek advice from the
independent reconfiguration panels, so there are some levels in
the system which give people a degree of security. It is an assurance
that there is a process in place for scrutiny. As we know from
last year, there is also the possibility of seeking judicial review
on some issues. It is not as if there is nothing there to protect
the interests of local people. The critical aspect is that inevitably
any service change will not suit everybody, but what must be in
place is a process which people believe in and can feel comfortable
with because it has been followed and has been transparent and
open.
Q76 Dr Naysmith: I turn from that
rather general question to the particular issue of the Bill and
LINks. When talking about it earlier I could detect a slight difference
between you as to what you thought LINks should be when established.
As has been said, the Bill says almost nothing; it is lacking
in details about what LINks should be. Mr Cayton would certainly
be in favour of LINks designing themselves. Different things can
happen in different places. Mr Vivian, I got the impression that
you had a firmer idea of what you would want LINks to be. I know
you said that it would depend on certain factors. Is that fair?
You do not appear to be saying quite the same thing. There is
room for that in view of the way the Bill is laid out.
Mr Vivian: I said what was in
my mind and I certainly know that that is also in the minds of
a lot of other people because I have talked to them about it.
That is the kind of picture that is beginning to emerge, but it
is not the department's policy that that is how they must be.
In trying to envisage it that seems to be how it will be.
Q77 Dr Naysmith: Decisions have to
be made about who will participate and whether decisions are to
be made democratically when a voice comes out of the LINk. That
has to be decided when they are set up. The question whether such
decisions are taken during working hours or outside them can also
have an influence. These matters must be decided at some stage.
There is a suggestion that civil servants will provide guidance
on it at some stage.
Mr Cayton: My conception of this
is very much linked to the governance models used in many voluntary
organisations, particularly those that have branches and sub-groups
within them. One has a defined membership, but that does not mean
that those outside it cannot also participate in various ways.
One also has defined rights of membership and a management board
or committee of some kind which has internal accountability to
the members as well as external accountability to funders. That
is the normal arrangement in the voluntary sector. One is often
accountable not only to one's trustees but, say, to a major trust
or donor who has provided money for a specific project. I do not
see a problem about LINks being accountable both to their membership
and to a local authority for the delivery of the contract part
of their work. I accept that there would be employed staff accountable
to the board of management. That is my current vision drawn mostly
from my voluntary sector experience. I also want to learn from
the pilots that are currently being conducted. People who live
in Devon may want a rather looser model perhaps with groups operating
in north Devon and in Exeter and Plymouth, whereas someone operating
in, say, central Manchester may be very happy with a tight and
much more centralised model. It is for those variations that we
want to be able to allow.
Q78 Dr Naysmith: Will there be guidance
on some of these things from the department; and, if so, when
is it likely to appear?
Mr Vivian: Part of this is all
about communication. There are some things that are "musts".
One must be absolutely clear as to what the legislation does say.
It gives some detail; it is not bereft of any. For example, the
functions are absolutely explicit and are listed. It says that
LINks should report on an annual basis and specify who can provide
support and so forth. We need to communicate clearly what the
Bill says, but there are other elements which need to be dealt
with, some of which are put in terms of, "We strongly advise
you", or, "Here are some models that you might like
to follow." The early adopter programme will help. We are
also in the process of setting out a model contract specification
for local authorities to use when they are procuring hosts for
LINks. We believe that that specification is absolutely fundamental.
The host requirement will in essence be how LINks come to life
because it will be the host that is responsible for attracting
people to join in and support the electoral process. To provide
some timescale, from now on we shall be saying more and more about
LINks and the process of establishing them under the Bill; we
shall be running nine regional events from March to May where
we shall invite patient forum members, local authorities and NHS
organisations to come along and hear more about it. Towards the
end of the year we will be issuing guidance in respect of which
the NHS Centre for Involvement has been working alongside the
department in terms of how best to be a LINkwhat the key
behaviours are, how best they can organise themselves and so forth.
Model specifications will be going out in the autumn to support
local authorities to procure hosts and so forth. There is a compendium
of measures.
Q79 Dr Naysmith: Quite a lot of guidance
will emerge eventually?
Mr Vivian: When it is ready and
relevant, yes. There is no point in our saying what the Bill provides
until it has gone through the parliamentary process. It must reflect
the final position.
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