Examination of Witnesses (Questions 41-59)
MR HARRY
CAYTON AND
MR MEREDITH
VIVIAN
1 FEBRUARY 2007
Q41 Chairman: I apologise for the late
start of this session. We hoped to finish it at about 11 o'clock,
so I will not even predict how long this session will take. For
the record, I ask you to give your names and the positions you
hold.
Examination of Witnesses (Questions 41-59)
Mr Vivian: My name is Meredith
Vivian. Within the department I have policy responsibility for
issues supporting a stronger voice, including PPI, complaints
policy, clinical negligence and redress.
Mr Cayton: I am Harry Cayton,
national director for patients and the public at the Department
of Health. That is a part-time advisory post. I suppose that at
this stage I should confess that with Ed Mayo I was co-chair of
the expert panel which concluded the review of PPI for the department.
Q42 Chairman: A couple of days ago
I together with another Member of this Committee sat with Mr Vivian
on a platform listening to the views of PPI people about proposed
changes. I put a question to both witnesses. Evidence to our inquiry
suggests that the benefits of PPI include: resolving the democratic
deficit, improving services, increasing accountability and ownership
and empowering communities, but the department's evidence mentions
only improved services. Why is that?
Mr Cayton: I think that a lot
of things are claimed for patient and public involvement, and
in the evidence to which we have listened we have talked about
just how hard some of the evidence is and how much of it is down
to experience. In looking at the way we engage patients and the
public throughout the health system we have to think very broadly.
At this stage I should like to make a distinction between patient
and public involvement, which I believe is a huge spectrum of
activity, from how my doctor talks to me about what treatments
are available and what happens to me to how my hospital or GP
practice runs its services to the bigger question of public involvement,
which is how to engage the community as a whole sometimes in difficult
decisions about service pattern, reconfigurations and so on. Sometimes
we collapse these things into a single portmanteau concept. Often
when we are talking about which bits work, which do not and what
is wrong and right with it we have to unpick which bit we are
talking about. In terms of the department's commitment to what
we are trying to do with LINks, which are only a small part of
the proposals on patient and public involvement, we are very much
focusing on the way in which communities can engage particularly
with commissioners in the design of services. That does not mean
patients should not be engaged through all kinds of patient involvement
mechanisms, including governing bodies, in helping trusts to provide
good services to their patients.
Mr Vivian: What we are trying
to say in the submission is that we have an overarching aim that
through PPI and its myriad methods of delivery services will be
improved and as a result people will be increasingly confident
about the NHS. We also need to think about social care. I think
that the things you have described are subsets of that. If one
has a service that is accountable then the accountability mechanisms
support the improvement ideal. We tried to deliver accountability,
for example, by giving powers to local authority overview and
scrutiny committees. Much of the LINk methodology is about much
greater transparency and accountability to local people and communities.
We can talk about empowerment as another objective which leads
to that greater goal. For example, we have talked about the delivery
of empowerment through the provision of an independent complaints
advocacy service. The things that you have mentioned as having
been referred to by other people are matters that deliver the
big aim which is the improvement of services through the voice
of people.
Q43 Chairman: The department has
made reference to the Picker Institute report, with which I know
you are familiar, which found that individual patients did not
feel involved in their care; they did not feel involved in treatment
decisions and were not given information about their condition
and medication. Do you think LINks will help this in any way?
Will it be about their own treatment?
Mr Cayton: I do not believe that
that is the role of LINks, but what is important in that part
of the Picker research, which compared six countries on levels
of patient engagement, is that if one does not have a culture
in the NHS in which patients are engaged in their care and treatment
one will not build the kind of capacity that one needs to have
the public engaged in health service planning. That touches on
some of the issues raised earlier about whether or not the public
is willing to become engaged in some of the more difficult challenges
that face a publicly-funded service like the NHS. That is why
I continue to argue that unless there is real continuity of cultural
commitment within the NHS, starting at ward level, about how patients
are talked to, dealt with and consulted about what they want right
through to the kind of involvement that one ought to have at national
level in policy-making through patient organisations one will
not be able to drive through of the kind of quality of change
that one wants. To give one really good example, many of the people
who graduate from the expert patient programme, which concerns
people with long-term conditions, to become more effective self-managers
move on to take an active role in organisations like patient forums
at the present time; they become tutors on the expert patient
programme and become involved in public health activities and
organisations through their experience of being empowered patients.
Q44 Chairman: Mr Cayton, you are
right to say that at a personal level a lot of this is about what
happens inside the health service. We hope that LINks will bring
this out all the time. Who has the lead in changing the culture
of the health professions?
Mr Cayton: Sometimes I feel like
a 1970s equal opportunities officer. We used to appoint one person
and say that we had dealt with equal opportunities. Fortunately,
I have people like Mr Vivian and his colleagues. We are still
a very long way from turning the rhetoric of a patient-centred
service into practice, but there is a whole set of mechanisms
that does that. Patient choice is one of the mechanisms that gives
people an opportunity to express their preferences in a different
way. There are perhaps weak mechanisms coming into place but we
need all of the different bits of the picture in order to make
it work. I do not believe that at the moment we have a really
clear strategy about patient and public involvement. We have a
set of mechanisms, an aspiration and commitment that has been
repeated by secretaries of state. Politically, I do not see any
wavering on the commitment to the issues, but we do not yet have
as coherent a strategy as I would like.
Q45 Dr Taylor: Mr Cayton, it is nice
to be on this side of the table as opposed to the other when you
had me in your grips some time ago.
Mr Cayton: It was a pleasant experience,
but I feared you might want revenge.
Q46 Dr Taylor: We are getting down
to the nitty-gritty. In the previous inquiry into PPI conducted
by this Committee we said that it needed to be a simple system.
The evidence we have received this time indicates that they are
asking for a simple system. Would not the first step be a clear
paper from somebody saying that LINks do this, the Healthcare
Commission does that, overview and scrutiny committees do that,
PALs do this, ICAS does this, the NHS Centre for Involvement does
this, the expert patient programme does this and patient participation
groups among GPs do that? Would that not at least be a start so
we would know which piece of PPI LINks would cover? You have already
said that it covers the public bit, so I am rather at a loss as
to what is covering the patient bit which is so vital to PPI.
Would it not be a start to list everything publicly with a definition
of their responsibilities and what they did?
Mr Cayton: I am sure we could
do that.
Q47 Dr Taylor: People even get muddled
up with the "A" in PALs and the "A" in ICAS:
one is "advisory" and the other is "advocacy".
One hears them commonly misquoted, even by ministers.
Mr Vivian: I suspect that it is
not quite as straightforward as you suggest. You have listed about
10 things and all of them have interactions with others, so a
coherent, straightforward paper that set them out might be quite
a lengthy document. But one of the things we have to do is ensure
that people understand how they can best engage in these activities
and opportunities.
Q48 Dr Taylor: I think that you are
making it more complicated than it need be.
Mr Cayton: It is true that inevitably
there are a number of bodies which have been created to solve
particular problems and not necessarily all of them have been
created in such a way that they are completely coherent one with
the other. That is a perfectly reasonable proposition, but I do
not believe it means that we cannot find ways to work through
what these organisations do in relation to each other and make
them effective in those areas. We shall be producing guidance
about the governance structures and the roles of LINks as we go
through the early adopter sites. There are already nine sites
where we are working with forums, the Commission for Patient and
Public Involvement and the Healthcare Commission to try to find
out from local people what works and what does not and what levels
of variation are appropriate in order to link geography and the
ethnic or socio-economic mix in particular areas. From those we
shall be able to produce clearer guidance than we have done so
far about both the governance structures that LINks should have
and their roles and responsibilities. We are not in any way embarrassed
about saying that we do not want to define these organisations
precisely because we want communities to define them for themselves.
I feel quite passionately about this. I spent many years in the
voluntary sector. I see the strength of the voluntary sector's
ability to create networks locally in communities, and that is
what we want to build upon. We want organisations that emerge
at the bottom of the community with the strength of local people,
not organisations that are designed by civil servants.
Q49 Dr Taylor: Some people have said
that if all these other mechanisms are working well we do not
need LINks?
Mr Cayton: One might argue that
if we had had complete patient choice we would not need LINks
because every individual patient would be able to choose the services
he or she wanted. First, I do not believe that in a publicly-funded
system we will ever have, nor necessarily would it be desirable
to have, complete patient choice. Second, because of geography
in many areas there is very limited choice. There just are not
enough services available. It is much easier to have choice of
provider in London than in Northumberland. Choice will always
be an incomplete and inadequate mechanism for improving quality
or getting customer service. Therefore, we need other mechanisms.
In particular, because government policy is very strongly to devolve
responsibility for commissioning down to PCTs it is absolutely
essential to ensure that they have a mechanism by which they engage
with their communities about the commissioning decisions they
make; otherwise, they will be detached. That is why I think LINks
have a very powerful role in moving public involvement at that
level away from NHS institutions and linking it to the patient's
journey through health and social care.
Q50 Dr Taylor: You say that patient
involvement in their own illness and journey comes through choice?
Mr Cayton: No, it also ought to
come through governing bodies of trusts and through patient participation
groups in GPs practices. There is nothing in our evidence to suggest
that people should stop doing the kind of good things that now
take place. I went to Sheffield recently and found fantastic user
participation across the hospital trust. They have 300 young people
under the age of 23 engaged in a youth project. Nobody told them
that they had to do it; there is no legislation about it. It involves
local people doing good public involvement. There is nothing in
what we propose that stops anyone from doing that.
Mr Vivian: I want to develop the
idea of LINks. There may be a slight misconception here. To reiterate
their three functions, one is to promote the involvement of people
in matters affecting their health and social care. It is a kind
of outreaching activity which says to people they can have some
influence and they should get stuck in to health and social care
services which are also under a duty to listen to them and seek
their views. It promotes that activity. The second function is
to gather the views and experiences of people who have used health
and social care services. If you like, that is the patient or
user perspective. It is a matter of understanding what it is like
to receive local services. The third function is to convey those
views to a number of organisations: commissioners, providers,
scrutineers and regulators. In essence, what LINks are about is
the collection of the views of people, whether they be users or
members of the public, and ensuring that the organisations responsible
for improving services receive those views and can understand
and deal with them.
Q51 Dr Taylor: That would allow individual
patients to transmit their views about what had happened to them?
Mr Vivian: That is what LINks
are there to do; they collect people's views. We do not specify
that a LINk must have eight or 10 people. We say that LINks should
get contributions from a very large number of people to ensure
that their perspective is informed by a large number of people.
Q52 Sandra Gidley: The current PPIs
locally have problems in recruiting and attracting people to do
the work. Could the reason for that be that people have the general
perception that the NHS just does not listen? If that is the case,
despite information-gathering and greater public involvement how
will you convince people that the NHS will listen for once?
Mr Vivian: From what we have heard
from the evidence collected by us over the past two or three years,
we suspect that a large number of people do not necessarily want
to be members of patient forums because they do not want to give
up the huge amount of time and commitment necessary to perform
that role. It is not that they do not want to have more influence
or say. Indeed, the exercise conducted under Your Health, Your
Care, Your Say showed very strongly that people did want a greater
voice, which is precisely what this is all about. At the same
time, one is always talking about LINks or forums but the NHS
is under a duty to involve and consult patients and the public
on an ongoing basis, so the focus is already on the system to
go and talk to people. LINks are ideally placed both to inform
that process but also to ask the system why it is not listening
to what is being said.
Q53 Sandra Gidley: So often the word
"consultation" is prefaced by the word "sham".
Mr Vivian: But I am not talking
about consultation.
Q54 Sandra Gidley: You mentioned
just now the duty to consult.
Mr Vivian: I said that there was
a duty to involve and consult, which is the key difference. This
is about engaging with people on an ongoing basis; it is not just
waiting until things have been provided and then consulting in
a way that is perceived as a sham. The duty is about an ongoing
dialogue.
Q55 Sandra Gidley: I still do not
see how the public will be convinced that greater notice will
be taken of them?
Mr Cayton: Of course there are
sham consultations. I do not believe that all consultation is
a sham. My PCT has just sent a nice shiny brochure through my
front door which tells me what it has already decided to do and
asks my opinion on it. I would rather they had stated the problem,
suggested some possible ways to deal with it and asked what I
thought about them. The fact there is a problem here about the
public perception of sincerity and consultation does not mean
we should abandon sincerity and consultation; it just means that
we need to work harder to make it more effective. We are trying
to persuade people in the NHS when planning such consultations
to move the questioning forward. In some areas they do well. Recently,
it has conducted some very satisfactory consultations in Bristol
after some very unsatisfactory consultation some years ago. It
realised that it had got the process very badly wrong. I was involved
in helping to redesign a new process which I believe has been
more successful and acceptable to the public.
Q56 Dr Naysmith: It still has not
stopped people disagreeing about the outcome.
Mr Cayton: It is one of those
almost irreconcilable dilemmas.
Q57 Dr Naysmith: The second one was
a brilliant consultation but it has not satisfied the people who
did not get the outcome they wanted.
Mr Cayton: It takes us back to
the point made earlier that ultimately someone has to make the
difficult political decisions. One has to go where people are.
Two weeks ago I visited a mosque in Newham where health days were
being run for people. It is no good my saying to those people
in the mosque in Newham that they should meet me or come out of
their community and talk to some doctors about health. It is much
more effective to do it within the community. As a result of those
meetings and following them up people get confidence in you and
start to believe that you are genuine and that they are being
listened to. It was said earlier—perhaps by Sandra Gidley—that
we are hopeless at telling people what we have done as a result
of consultation. Of course people become frustrated because we
miss out the last stage of the consultation which is to tell people
what we have done as a result of what they have told us, even
if when you tell them you have done something different.
Q58 Sandra Gidley: I did not say
that but I entirely agree with that point. I have yet to see how
the public will be convinced but I live in hope.
Mr Vivian: I add another important
dimension to it. Members are aware that currently a Bill that
provides details on some of these issues is currently going through
Parliament. Clause 164 places a new duty on Primary Care Trusts
to respond to what people have said. Because the most significant
role in terms of spending money and local accountability now lies
with the PCTs we believe that there should be a duty. PCTs must
first engage with and talk to people about what they need and
expect, and they will need to report on an annual basis setting
out what they have heard and what they will do as a result of
that. The very thing that you are talking about will be placed
on PCTs as a statutory duty.
Q59 Sandra Gidley: Is there a problem
with the quality of work produced through the current PPI?
Mr Vivian: There were over 570
forums and since the reconfiguration of PCTs we are now down to
398. Clearly, there would be a wide range of activity and degrees
of accomplishment, competence, capacity and so forth. There are
some forums that have behaved in a very objective, energetic way.
They have taken on difficult issues and made excellent reports
and recommendations. At the other end of the spectrum one would
expect something quite different, and there is a range in between.
Whether or not they are good or bad, we think there is a great
deal to be said for adjusting and revising the whole system for
representing views at local level to make things more relevant
and capable of being more inclusive and to widen the remit to
include social care. I do not think it is right to say that forums
are good or bad or that they can be summed up in that black and
white way. The model can be adjusted to enable local services
to hear what people say in a better way.
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