Examination of Witnesses (Questions 323-339)
PROFESSOR ANGELA
COULTER, MS
FRANCES HASLER
AND MR
DAVID WOOD
22 FEBRUARY 2007
Q323 Chairman: Could I welcome you and
apologise for the lateness of the hour in terms of this session.
It is now good afternoon and not good morning. Could I ask you
individually to say who you are and the organisation you come
from?
Mr Wood: I am David Wood. I am
the Chief Executive of Attend, which is probably best known as
the umbrella body for Leagues of Friends. We are also leading
a partnership of organisations that support volunteering in the
NHS and providers of training to a huge range of organisations
of people who support volunteers.
Professor Coulter: I am Angela
Coulter. I am Chief Executive of the Picker Institute, which is
an independent research and development charity which specialises
in measuring patients' experiences and trying to use that knowledge
to improve the quality of care both at the bottom of the service
and also right up to policy level.
Ms Hasler: I am Frances Hasler.
I am the Head of User and Public Involvement at the Commission
for Social Care Inspection, which is the body that performance
assesses the social care function of 150 local authorities and
inspects and regulates round about 28,000 registered services.
Q324 Chairman: Could I ask a question
to all of you about the current situation? My postbag as a constituency
MP has far more issues around health in it, sometimes on what
is happening nationally on health as opposed to what is happening
locally on health, than it does on social care. Is there a danger,
do you think, that the issue about social care is going to get
drowned out when LINks comes into being, and that inevitably we
are going to be dominated by what dominates the agenda at any
one time? Do you feel there is a danger that this might happen
and could it or should it be avoided?
Ms Hasler: This was a concern
for CSCI from the beginning. We are very much as an organisation
completely driven by what matters to people who use social care
services. One of the reasons why we are quite enthused about the
current plans for LINks is that the idea of having a much wider
reach-out to the community and the community development model
that Brian was alluding to before in the sense that it would not
be necessarily a narrow, small group of people getting involved,
means that there is much more capacity to involve the range of
people who use social care services, and again the idea that people
could dip in and out of active engagement with the LINks would
fit very well with people who use social care services. There
are still some concerns, I think. One of the things we know is
that a lot of the people who use social care services are the
sorts of people that regularly get left out of rather more general
representations—people with learning difficulties, older
people in residential care homes. Those sorts of people are quite
often passed over in a more general consultation exercise, so
whatever duties are given to LINks there needs to be a very strong
requirement that all of those equality dimensions, including things
like age and different sorts of impairment, are part of the duty
to go and reach out to.
Professor Coulter: There is indeed
a risk. However, most service users and patients do not actually
make this distinction. If you start in your inquiries from where
ordinary people start, they do not think about the divisions between
these different organisations or structures or methods of funding.
If LINks are to have a role in this, and I must say that members
of this Committee have been asking some really good questions
this morning, then I do not think the answers to most of those
questions is LINks.
Q325 Chairman: Which creates a problem,
Angela, I have to tell you, but carry on please.
Professor Coulter: As Frances
said, LINks are supposed to have a broader focus but they are
going to have very tiny resources, they are going to have very
little in the way of support as I see it, and these issues are
so much more important. It is going to be incumbent on the statutory
organisations to make sure that they go and, for example, consult
the people who are seldom heard, the people who have multiple
needs that span health and social care. Hopefully LINks will be
in there too but I really do not think LINks are going to be the
answer to all of this.
Mr Wood: The only point I would
want to add to that is that I do not think, from the public and
certainly the volunteers I deal with, that the perspective would
be that there was any distinct delineation between health and
social care. More traditionally, I think, people see health as
hospitals or GP surgeries, and with the way in which health is
delivered as it moves out into the community people are increasingly
confused. I think it is seen as an amorphous delivery anyway.
Yes, there may be some issues about things being lost but I do
not think from the general public's perception that that is particularly
an issue.
Q326 Sandra Gidley: This question
is for David because I want to talk about volunteers. Numbers
are dropping so how do we encourage volunteers to come forward
(a) generally but (b) to take part in LINks in some way?
Mr Wood: I think that the type
of volunteer is changing and the way volunteers offer their volunteering
opportunity is changing. Yes, we are seeing a significant drop
in the traditional volunteer. I am frequently stereotypically
described as being in charge of the jam-and-Jerusalem, twinset-and-pearls
sort of style, and actually there is a huge amount of volunteering
that is going on in different fields of volunteering but they
are not attracted to the repeat volunteering that happens week
after week on Tuesday at four o'clock, so we have to think of
ways to attract people in a different way. The dip in and dip
out style is very important. I look at my own volunteering. I
volunteer for various things but I am asked, for want of a better
word, to do consultant volunteering: you go in and you help on
a particular project for a short time. We do not even call it
volunteering; we help. That is what we want to do, we want to
help change things, we want to make things different. The sort
of model you need is quite flexible in that you will have a core
of people who will be regularly supporting a particular initiative.
What we have heard already today is that the paid staff support
of that is deemed to be important because people do not necessarily
want to do lots of the boring admin that goes with it, but you
also have a network of people who have lots of skills and enthusiasm
to support different bits of the initiative, things that press
their buttons that they want to get involved in.
Q327 Sandra Gidley: So it is targeting,
and how do those people know what they want to volunteer for?
One of the problems with the PPIs is that they very often sit
in a remote place and nobody knows they are there. There are others
that do it much better, I would add. How are volunteers going
to engage with LINks? How do we encourage that? How do they get
to know about it?
Mr Wood: I think there is a huge
confusion because everything is initials, is it not—CHCs,
PPIs, PALS, PFIs? If you are out there in the world and you may
have lots of skills that you want to contribute you do not understand
what all of these are and you do not know how to engage, so actually
what you do is you just get overload and you switch off. There
is an issue that we have heard touched on a number of times today.
It is not only about advertising volunteering opportunities. It
is also about raising the awareness of the public about what the
point of LINks and PPI forums is. What are they there for? What
difference do they make? I think that, significantly, people do
not understand that. They just think they are a group of people
who are a bit busybody-ish who are interfering and they do not
see the genuine contribution and difference they can make. I think
it is about an overall awareness and changing things frequently.
In the voluntary sector two or three years is frequent. It takes
a while for people to understand the change and for volunteers
to contribute. Frequent changes of the nature that we are experiencing
actually put people off.
Q328 Sandra Gidley: Would you say
that with the change from CHCs, PPIs, now LINks, there has been
a loss of people because of that or are you talking about different
sorts of change?
Mr Wood: I think there is a loss
of understanding, if that makes sense. People may have understood
what they thought the CHCs did. Whether they did it or not is
another issue. They may also have started to develop, because
I have to say that increasingly we are seeing some local newspaper
bits about what the PPI forum is saying, and each time you change
that, in terms of it being an opportunity that you might think
you might want to become involved in, you water down people's
sense of, "Why would I want to support that?", because
each time you change, in the volunteer's view, particularly if
they are volunteering, there is an evaluation that there is something
wrong. It is making a judgment. Although that may not be the judgment,
my whole experience of working with volunteers is that they read
it as an implied judgment that somehow it is an evaluation that
their volunteering is not good.
Q329 Sandra Gidley: Or that they
were wasting their time?
Mr Wood: Yes.
Q330 Mr Campbell: Professor Coulter,
your work is focused basically on patients rather than public
involvement, so why is it that patients' involvement in the past
has not been done better?
Professor Coulter: It is difficult
to answer that but I think the answer probably lies mainly in
the professional realm. What is most important to most people
who use health and social care is the relationship they have with
the people who are providing them with services. They want quite
a number of things from that, including involvement and participation.
Patients want to be involved in their own care like most people
do. They want information about what is happening, they want to
be told about the side effects of their medicines. They want to
be involved in decisions about the best form of care or treatment
for them. They want to have the options set out for them. They
want people to listen to them, all of those things. That is patient
involvement, that is real participation. We have heard a lot,
and it is an important issue, about the extent to which people
do or do not want to get involved in hospital friends or in sitting
on LINks or PPI forums or whatever. That is a real problem because
it is only a tiny proportion of the population that does want
that, but actually the vast majority of the population wants an
active involvement in their own care. I would say to you that
I think that is the starting point for PPI, and I hate the initials
but that is where it should start, and that indeed is where it
starts for most people. As you heard this morning, one of the
impetuses that makes people go and join a PPI forum, and hopefully
in the future a LINk, is that they have had either a very good
or a very bad experience and they are concerned about other people
either avoiding that bad experience or more people having the
good experience. It is altruism that motivates people and, thankfully,
there is a great deal of that around still in this country even
if there are barriers to getting involved in formal things. At
the patient level or at the service user level, however, what
we want is a different kind of relationship with professionals.
There is a lot of evidence that in this country we are doing really
badly there. When you compare the extent of involvement and the
extent of support for involvement that we get in the NHS, it is
worse than in other western developed countries. This is one of
my frustrations with this whole debate. We focus endlessly on
structures. In my view the abolition of the CHCs was a major mistake
because although they could have been improved, and indeed they
themselves had a review just before they were abolished to say,
"We want to improve and make ourselves more effective",
they were abolished and we have then been reinventing and reinventing
things and we have taken several steps backwards. In the meantime
the thing that is really important to everybody in the country,
which is having a much more equal partnership relationship with
the professionals that you are dealing with, has not been looked
at at all. People talk about PPI but they forget about the "p"
bit, the patient bit, the first "p", and concentrate
all the time on the second "p", and that is a mistake.
Chairman: I think Sandra is trying to
get in here.
Q331 Sandra Gidley: Yes. I agree
wholeheartedly with what you are saying but what you are talking
about in many respects is the individual relationships that form
your experience, which is something that, whatever structure we
put in place, we will never address.
Professor Coulter: I want to disagree
with that.
Q332 Sandra Gidley: Do please, but
it seems to me that for the problems you are describing the solution
is way back. It is in training and attitudes of health professionals
to the patient, not something that we can deal with easily once
people have entrenched ideas.
Professor Coulter: That is where
I disagree. In fact, yesterday the Government published a White
Paper, which is one important step towards dealing with that,
and that was about the regulations for health professions and
the introduction of regular recertification, for example, especially
if that includes patient feedback on their experiences, which
we were assured by the Chief Medical Officer it does. That is
exactly the kind of mechanism that could make a big difference
to everybody's experience and arguably a much bigger difference
than setting up yet another new set of committees.
Q333 Mr Campbell: Will LINks improve
it?
Professor Coulter: Will LINks
improve it?
Q334 Mr Campbell: That is not what
you said first off, of course, but I have got it down here so
I have got to ask you anyway.
Professor Coulter: I think LINks
could make a difference to this area that I am focusing on, which
is the individual relationship, but I think what LINks will have
to be aware of—and I am sure they will be aware of because
certainly the PPI forums are and you heard it again this morning—is
that they tend to come from a very small sector of society. It
is the people who have the time. Other people with more problems
in their lives just do not have time to sit on committees or to
do some research into what patients think about their practices
or whatever. That does not matter. It is really great that we
have got those people who are willing to sit on these committees
but they need to make sure that they are in touch with everybody
else who is never going to come anywhere near a LINk, who would
rather die than be on a committee, and the way we need to do that
is to be provided, because I do not think they can gather it themselves;
I think it is not feasible, with good information and good data
on what those other people think.
Q335 Mr Campbell: That was my second
question, by the way, will they collect that sort of data and
use it wisely?
Professor Coulter: I do not think
they should collect it. I think it would be a terrible waste of
time to have them collecting it because it already exists. For
example, in this country, which is unique in the world, we have
a national patients' survey programme. Every single NHS organisation
has to survey their patients on an annual basis. There is quite
a bit of public money spent on that programme and it is terribly
badly used. Some of the PPI forums know about it and use it rather
effectively because they take the results for the particular trust
or organisation they are interested in and say to the chief executive
and the board, "Here are some things you are doing well,
here are some things you are doing badly, what are you going to
do about the things you are doing badly?" That should be
their role. In those surveys what we see is that time and time
again patients are saying, "I didn't have enough say in decisions
about my care. Nobody told me about the side-effects of my medicines.
I wasn't given well co-ordinated care when I was leaving hospital.
The GP kept me waiting for hours". Those are the kinds of
things that when you have it across the whole country, and these
are huge surveys, we have got data on more than a million patients,
you have a really good starting point for having a constructive
discussion, hopefully, with the organisations you are looking
at. Since those surveys get quite a good response rate, including
from the groups who, as I say, would not dream of coming to a
committee, from people in disadvantaged groups, people from minority
ethnic groups and so on, they are all represented in these surveys,
there is a lot of meat there that can be used to ensure that the
LINks have access to a much wider view than they are ever going
to be able to be in touch with face-to-face.
Q336 Mr Campbell: So all these surveys
of patients, and data on patients, going to LINks would be a complete
waste of time?
Professor Coulter: No, I am saying
they all must go to LINks. I am saying that LINks should not do
them themselves because they are already done and paid for.
Q337 Mr Amess: It is a shame really
you have been allocated this particular session, I blame the clerk
really because, Professor Coulter, when you said that we were
asking the right questions but LINks were not the answer, I thought
that was marvellous, and I wholeheartedly agree with what you
said about CHCs, so why we are really continuing with the questions
I do not know. Mr Wood, how can LINks ensure that contributors'
views are put across properly? Is there any need for some kind
of facilitator role within LINks?
Mr Wood: I think it depends on
the sort of people you want involved in LINks. If we genuinely
want to engage a broad cross-section of the community, if we want
to have professionals, people who are busy, offering their expertise
into these particular groups then I think you are going to need
some sort of facilitation to make it work. I think I already alluded
to the fact that increasingly people want to see basic admin duties
done for them. There was a time when we had a fiercely independent
voluntary sector who fought off any concept of a paid member of
staff working with a group of volunteers, but increasingly we
are seeing much greater professionalisation of that role to make
sure that people's contributions are properly valued, any issues
they might have are taken account of, so a proper contribution.
To do what we really want them to do, which is perhaps bring their
expertise to the table, so that happens we increasingly need to
have that facilitated in some way, shape or form.
Q338 Mr Amess: I am sure you are
right, a paid person will be needed to pull this all together.
Ladies, are there other types of training needed for those who
are involved in LINks and have you got any ideas how this could
possibly be done?
Ms Hasler: The facilitation that
is needed, and whether it is training I do not know, is helping
to map people through what can be changed and how it can be changed.
A lot of people know what they want to be different in what they
are getting, certainly in social care circles people have quite
strong ideas about what they like and they do not like, but what
they do not really know because it is not very simple is what
are the levers of power, what makes things change and what is
stopping things changing because sometimes it is local policy,
sometimes national policy that is the sticking point. One of the
functions of a LINk as far as I can see is to help people to have
a place where they can sort that particular one out and they can
know where they are going. Certainly in social care changes have
come about because people who use the service have said, "We
don't like what we have got, we can think of something better"
and then they have to work out how they can make that happen.
Some of those have now become mainstream ideas. Direct payments
was one that was developed by disabled people and is now a mainstream
government policy. Individualised budgets, a very similar notion,
was developed by the parents of people with severe learning difficulties
and it is now becoming mainstream social care policy. What has
made it go in both cases is a few people who have helped those
people with those ideas and passion to do something differently
to direct their passion at the place where the change could happen.
To me that is one of the things that LINks should be doing. Sometimes
surveys are what you need to get a sense of where you should be
going but you could have done surveys for years and years and
not come up with direct payments as your answer. Letting people
do it and try it and showing that it worked was the way forward.
Some of the things that LINks should be involved in should be
shortening those lines of communication between people who use
services and want to have a say in them and want to change them
and the people who can enable those things to happen. I see that
as the bridging. There may be some training. Taking part in committees
is a real minority sport, so some people will want to do that
and are very good at it but other people will want to do what
they see as more practical things. There are lots of people already
doing all sorts of things in the voluntary sector and what they
want to be able to do is to link that up to what is happening
locally that they can influence.
Q339 Mr Amess: We hate committee
work! Professor Coulter, given your scepticism could you possibly
come up with any training ideas?
Professor Coulter: Yes. I agree
very much with what Frances said in answer to this but I think
co-ordination is more important. One of my concerns is that the
LINks will all be terribly fragmented. We already have a huge
number of patients' organisations, for example, but the whole
scene is fantastically fragmented. I think they will need to get
together with others, both to maintain their strengths, to help
them develop creative ideas that might, for example, lead to real
service developments, which is very important, but also because
sometimes they need to perhaps lobby you and need to exert some
influence at a policy level and if they just remain fragmented
that is not going to happen.
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