Examination of Witnesses (Questions 106-119)
MS SHARON
GRANT, MS
ELIZABETH MANERO
AND CLLR
BARRIE TAYLOR
8 FEBRUARY 2007
Q106 Chairman: Good morning, ladies and
gentlemen. For the sake of the record, could I ask you to introduce
yourselves, your name and the position that you hold?
Ms Manero: I am Elizabeth Manero,
and I am the Director of Health Link.
Mr Taylor: Barrie Taylor. I chair
the Health Scrutiny Task Group in Westminster.
Ms Grant: Sharon Grant, I chair
the Commission for Patient and Public Involvement in Health.
Q107 Chairman: Whilst welcoming you
to what is our second session in our inquiry into patient and
public involvement in health, I should congratulate you for getting
here on time, unlike some members of the Committee, unfortunately.
Could I just start with a question to you, Sharon, and this is
obviously about the Commission. Can we begin by looking at the
written evidence? Several submissions suggested that PPIfs were
"too effective" and this is why they are being abolished.
Can you give us some examples of the type of work that may have
made them unpopular?
Ms Grant: Unpopular? I am not
quite sure with whom. From our point of view, PPI forums could
not be too effective. We want them to be highly effective. I think
perhaps what you are quoting from is from a particular faction
that perhaps takes a more conspiratorial rather than cock-up interpretation
of the last few years. Certainly PPI forums have started to mature
and we are now beginning to see some really quite excellent work
from them. There are many examples. We have reports to our board
meetings every month, very detailed reports of what the forums
are up to throughout the regions and of the outcomes of what they
are doing. I can quote you a few examples, for example, the forums
in Leicester have worked with the Overview and Scrutiny Committee
locally to get a shuttle bus that goes between the hospitals.
It is hugely valuable. I think it was used by 7,000 people in
the first couple of weeks, which shows the level of demand that
there was for that. At Moorfields the forum suggested that patients
with sight difficulties should wear a small yellow armband whilst
they were on the premises so that everybody would know that they
had sight difficulties and when it came to meal times and other
occasions their particular needs could be identified. That is
a suggestion that is now being taken up by other forums and you
will probably see that happening in hospitals and other establishments
throughout the country. There are many, many examples of ideas
and work that forums have done which are really starting to show
some real results on the ground at the level of improving services
and feeding back to PCTs and trusts patients' experience of what
is going on.
Q108 Chairman: The other thing about
this sort of exercise is, obviously, we publish our terms of reference
and people come on the website, see them and then they respond.
It is not always that you are getting a full, comprehensive view
of the situation. I am sure you have seen the written evidence
that we have published, comments about the Commission itself as
opposed to about PPIs, that were quite critical of the Commission.
Why do you think that is? Is it because we are not going for a
representative sample of PPIs by just saying "Please write
in if you have a view"? Why do you think that is?
Ms Grant: I think there are various
reasons. Clearly, the Commission was born in quite difficult circumstances.
There were a whole number of people who were displaced by the
system that was brought in in 2003, notably those who were associated
with or indeed employed by Community Health Councils. Some of
those were highly attentive to every detail of what we did and
were extremely vocal, so there was always that. There was also
the question of the speed with which we were obliged to establish
ourselves, which I think is fairly well documented. On 2 January
2003 there was myself and the Chief Executive and an empty office
in Birmingham; by 1 December of that year we had nine regional
offices, umpteen staff and 572 forums with over 5,000 members.
It was done at a speed which one would not have chosen, I think.
There is that. Some of the issues that people are very critical
of are actually rather old now. They are things which occurred
in the early stages of setting up. The general point here that
I would really want to labour, if you gave me the chance, is that
what we were doing here was something really completely new. We
were now getting to the area of serious patient and public involvement
for which there was not the capacity, either at the level of members,
at the level of the capacity to support those forums, and indeed
at the Commission, so everybody was doing something entirely new.
This was a different brief from the CHC brief and it meant we
had to grow capacity, particularly to support the forums, and
in the early stages it was not perfect but we do believe, particularly
at the level of forum support, we have done an awful lot of work
to improve that performance, we have re-tendered; some of the
original providers have now made a strategic withdrawal from the
area and we now have really quite high levels of satisfaction
with the support that we are able to provide for forums. So I
think there are a number of reasons for that criticism. A lot
of it is early criticism, I think.
Q109 Mr Amess: It is an extraordinary
journey that we have been on and of course, you were in post when
we had the inquiry last time and frankly, you have already answered
my first question because I was going to ask you what lessons
you have learned about Public and Patient Involvement forums over
the last four years. Is there anything that you think you have
not covered so far?
Ms Grant: There are many lessons
at different levels and I would say again we are on a learning
curve. We are just at the beginning of a long journey with this.
Q110 Mr Amess: You could never have
expected this change so quickly, could you?
Ms Grant: No. I have said a number
of times that, even if we had been left to ourselves, it would
have taken five years for the system to really mature and start
to show some serious results, and to start to move from just monitoring
services towards involving people in service planning and commissioning,
and at a strategic level, which is really what we need; we want
people involved when the big decisions are taken that shape our
NHS and associated services. That is where you want to get to
but you have to take people from where they are. That is what
we have learned and whatever ambitions we might have had as a
board and I might have had as a Chair, I have to say, when you
get to the grass roots, people are not ready for a lot of the
fancy ideas that we might have and you have to take people there
gradually. That is a big lesson. The other lesson is that really,
if you are serious about involving people, it costs money, and
if we really mean what we say about the importance of patient
and public involvement in our National Health Service and our
social care services and if it is as important as everything else,
we have to resource it, particularly if you are using volunteers.
They expect to have their expenses paid, they expect to be trained
and they expect to have administrative support for all that they
are doing. It cannot be done on the cheap. This is one of our
concerns about what is being proposed. We feel that it is almost
being set up to fail because of the level of resources.
Q111 Mr Amess: Just before I bring
in your two colleagues, I want to get to the inner workings of
all this. You have mentioned these lessons. In terms of the relationship
with the Government, do you think they have been interested and
have really been listening to what you have just articulated to
the Committee, or do you feel that you have been paid lip service
to and have not really been taken much notice of?
Ms Grant: I think it is fair to
say there are times when one has felt that patient and public
involvement has not been high on the agenda, and it has been difficult
for us to find a helpful and critical friend at the level of the
Department.
Q112 Mr Amess: I think we understand.
If I could ask your two colleagues to give us a concrete example
of where these Public and Patient Involvement forums have led
to a specific service improvement, can you think of one particular
campaign, one particular meeting that really did change things?
Mr Taylor: I can certainly offer
that. I have given that in my evidence as well. That is in relation
to the way forums have worked together. We have brought two forums,
one PPI forum from the PCT and one from the acute trust, together
with the two trusts as well, so the local authority took a lead
in bringing them around the table and said, "What is it we
are going to do? Everybody wants to do something about out-patients.
What is it that you want on the table?" We found that a very
positive experience in seeing that the PPI forums operated as
eyes and ears, people who could gain information, bring it back
to the Scrutiny Committee and the Scrutiny Committee could make
a judgement on what it was to be proceeded with. What you found
out of that was an excellent example of both partnership working,
proper roles for each of the individual agencies engaged, and
the outputs of it have been things that can be monitored. I can
say to you that I know the trusts involved, very particularly
St Mary's trust, have been very pleased with the outcome of that
because it has helped them do their job properly. Just finding
the way in which you can get them to agree those terms in which
it would work as a project was helpful, and it has had positive
outcomes for each of the parties, including Scrutiny, because
a duty was placed on Scrutiny as one of the recommendations of
the outcomes of that, how we would perform our role. I hope that
helps you.
Q113 Mr Amess: So it may not have
been headline-grabbing but, in terms of avoiding unfortunate headlines,
it has worked well?
Mr Taylor: I would go further
than that. The way in which good decision-making works in the
public sector is if you have confidence between the organisations,
if you have some degree of equity, however that is framed—the
independence issue falls into that as well, which leads to reputations.
If the reputation of the organisation engaged is strong enough,
it will listen to you. They do not need a framework if the reputation
is strong enough but, in order to get to the reputation, what
you need is a framework of both legislation and also an ability
to perform. I think that is a critical element.
Q114 Mr Amess: Thank you. I wonder
if the Director of Health Link can think of any example.
Ms Manero: Yes, Health Link does
work with patients forum members through our general patient and
public involvement work, and one of the projects that we undertook
was with two acute trusts' patients forum in London, where we
were trying to develop new methods of patient involvement which
permitted people from marginalised groups to have an influence
on the quality of health services without having to join a forum
in that formal way. We did a joint project with forum members,
who, right at the very beginning of the forum, when they were
very new to it, undertook this project, which involved them working
with homeless people to monitor A&E services.
Q115 Mr Amess: Where was that?
Ms Manero: This was at the Whittington
Hospital and Homerton Hospital patients forums. Even though they
were just starting up, they were very new, they were willing to
undertake something very, very different and actually quite challenging,
and it was independently evaluated, and very positively so, and
we were able to get changes in the way that A&E services are
provided to homeless people as a result of that project. That
was an example of using the framework that Barrie has referred
to for patient involvement and tacking on to it another process
which would enable people who were not going to engage in that
kind of process to get involved so that you could address a significant
health inequality.
Q116 Dr Taylor: Can I start looking
at the future and the design of LINks? The Bill is desperately
vague and one civil servant said to me that the whole point of
having it vague was so that things could change, but we certainly
need some things written on the face of the Bill. Elizabeth, you
have described LINks—and we do like this—as "an
amorphous, fluctuating group of people, groups with no leadership
and little accountability." I would like each of you in turn
to tell us your ideas of the basic design of LINks. We know that
you told the Bill Committee that PPIfs should not be abolished
and that, if they have to be abolished, they should evolve with
LINks and that PPI members should stay in LINks. Tell us how you
would design LINks.
Ms Manero: As I see the purpose
of LINks—and I cannot acknowledge that I am totally signed
up, to use the vernacular, to this purpose, to the need for this
change anyway—it is to broaden patient and public involvement.
I totally accept the principle that there should not be an elite
of people in the local community who are able to influence the
Health Service and others who are not. That is a principle which
I think we would all acknowledge but with LINks, the proposal
is to have a very, very large, "perhaps thousands of people",
involved in the Health Service. My worry about that is that it
focuses on a process; it focuses on broadening a process rather
than refining an outcome, because if you have thousands of people
all saying the same thing, I am not quite sure why that is better
than having a very focused approach, with a number of people who
are trained and supported, one of whose obligations is to go and
consult more broadly in the community. If a smaller group of people
can achieve something that everybody wants, I am not quite sure
why we need everybody to be involved in the process. That is my
main beef with the whole LINks proposal. If I were designing it,
I would suggest that all the existing members of patients forums
should automatically be placed at the heart of the new LINks.
There is in the current Bill set-up no heart to the LINks. That
is the difficulty. There are large groups but on the face of the
Bill there is no core of people who are trained, who are subject
to governance requirements and who can provide leadership to a
LINk. So my difficulty—and the expression you have described
exemplifies that—is that I do not know where the middle
of it is, I do not know where the heart of it is, I do not know
how it is to progress.
Q117 Dr Taylor: What you are saying,
without putting words into your mouth, is that there should be
a central group made up of people with experience who could then
link outwards to other groups, disability groups, young people
groups, and feed in, but there has to be that central core.
Ms Manero: Yes, which is actually
how Health Link operates, because we have a network of 120 ex-CHC
and current patients forum members with whom we work. They have
the statutory rights and the means of access into the Health Service,
to discussions and to monitoring and to so on, and we have a network
of about 15 or 20 groups of voluntary sector organisations who
work with refugees, asylum seekers, homeless people and so on,
and so we can bring the two together and match the legal powers
and rights with the broader perspective of people with health
inequalities.
Q118 Dr Taylor: That fits extremely
well with the suggested design my own Chair of a PPIf has put
forward.
Mr Taylor: Let me give you my
reservation to start with, which is about the way in which I think
currently we have a very good network of voluntary sector networks
both in specifics and also about the general. I have a little
bit of concern from the local authority point of view that what
we might be putting into place is something that I think currently
exists in a good format within their terms, and if you look at
the evidence I have presented, you will find a series of agencies
that are already in forums, are already in networks and they are
very targeted. My worry is that what is likely to happen is that
some local authorities may well find this government initiative
and ability to try and form a link, fund it and you may well find
that local authority reviews how it is currently working with
its existing structures with the voluntary sector. So if, for
instance, the monies that have been floating around, which is
about £150,000 for LINk, a grant—I believe it is a
three-year grant that is being proposed—what you may well
find then is local authorities reassess whether or not they are
actually funding those other networks that currently exist. That
is a reservation. It is not the way forward, obviously. My real
concern is to ensure that a proper framework exists between the
agencies so LINks need to have an explicit role in legislative
form. Otherwise, I think the agencies between them will have a
real problem about relating to one another. I believe there are
probably amendments to be placed on the Bill, which is trying
to bring into place the local authorities and the Health Service
together, to see whether they will be assessed together. I cannot
see anything in the Bill which helps you see what the legislative
framework might be for LINks to respond to local authority service
areas. It is disappointing really. It could actually be improved
by making sure that that exists. There is a lot of discussion
about how you relate this to health but it still does not relate
to the joint agenda of the two coming together, and we know that
that is the big commissioning role that is changing. I would say
that to me would be critical. So duties and responsibilities should
be framed in legislative form so that they can work well together,
and then the way in which you really see the ability to do monitoring,
from whichever agency it is, and joint work. I would go back to
seeing how they work well together, personally. That is my real
keenness.
Q119 Dr Taylor: Would you agree as
a sort of design idea with Elizabeth's idea of a central group
that feeds out into the others as a way to go?
Mr Taylor: Yes, but let us not
fool ourselves as to what exists already. Honestly, I just think
there is already a large amount of that going on.
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