Examination of Witnesses (Questions 384-399)
PROFESSOR PETER
BERESFORD, MR
DAVID HOLMES,
MR ANDREW
HARROP AND
MS LIZ
STONE
26 APRIL 2007
Q380 Kelvin Hopkins: Much of what
you say is compelling, persuasive and indeed unarguable common
sense, and I just wondered if you had got any simple examples
where the participatory approach you suggest has had real positive
benefits, where previous provision was not good and it has improved
in terms of standard and reliability as a result of user involvement.
Ms Stone: I can give you two examples.
I will give you a very personal one to do with one woman who was
living in what was called an NHS campus but was actually a long-stay
institution by another name, who had very challenging behaviour.
She was fortunate enough to have an advocate and that advocate
spent a huge amount of time just being with her because she was
not someone who used verbal communication, so her advocate had
to learn about her from her. She was able to work out exactly,
almost perfectly, we think, the kind of home that this young woman
wanted to live in. It needed to have a garden with running water
and a swing seat so that she could sit outside in the sunshine.
It needed to have a nice comfy chair indoors, her bedroom needed
to be a certain colour, all sorts of things that the advocate
learned through observation. That really changed that woman's
life and provided a model for other people who were in very similar
circumstances to her, to be able to work with an advocate and
achieve something which was really meaningful. That is a very
small scale example. On a slightly bigger scale Mencap runs what
I suppose you would call a service in a way, Mencap Now, which
looks at delivering daily activities for groups of people. It
is a sort of re-think on the whole day service, but that service
is built around each individual person. My team go in and work
with them and they do a three-day planning project with them where
each person is allowed to express what they want from their lives,
what they would like for the future, and then the service takes
all those wishes and expressions and works out ways of, if not
entirely meeting them, going a long way towards meeting them.
That is creating services that are driven by the people that use
them, but they are being run by a giant charity like Mencap, so
it is quite a good mixture of the large charity—we do get
criticised because we are a huge service provider and there are
issues with that—creating services that are driven by individuals
that produce something that really works for lots of people.
Professor Beresford: Could I give
a couple of examples that are similarly at different levels? One
is a piece of research we did where we were invited in by the
provider of the support service for direct payments in Poole,
which is run by a disabled people's organisation. We were checking
out with a wide range of service users what they felt about the
service. We did this independently and they had some negative
things to say, but by and large their comments were very positive.
They said that it helped them really get into accessing the service
and supported them as long as they used it or had changed circumstances,
and that has been evidenced, but more broadly we found that people
valued the support services, the infrastructural services for
direct payments, which were provided by service users themselves.
I think both the National Audit Office and the Audit Commission
have evidence from work that they have done with conventional
commercial providers that the experience has not been so positive.
Another much bigger example is that the Government a few years
back introduced a new social work degree or qualification, and
made it a requirement that every level of the process of education,
the curriculum, the selection and so forth, had to involve service
users. They provided for each higher education institution a dedicated
sum of money to do that. I work most of my time in such an institution
and students and colleagues greatly value that input. It is making
the training and education more helpful, more relevant, more useful
and practical. It is still patchy, it is not everywhere as good
as it might be and some people are taking it much further than
others, but it is making a real difference and it will provide
better, more appropriately qualified practitioners to work with
service users, who, of course, are seeing service users in different
sorts of roles, getting a different feel of what is possible for
the people they will be working with.
Mr Holmes: There is a piece of
research by the Joseph Rowntree Foundation which shows that involving
service users in the most basic way in their own care plans has
reduced risk massively.[4]
It is a pukka piece of research that the government would like
mainly due to the fact that service users, when involved in their
own care plans, are able to point out the errors in their psychiatric
histories which are quite often huge. NICE's[5]
own guidelines on self-harm are almost entirely stolen from the
self-harm network which service users got together, a brilliant
example because there was not a medical model of self-harm. There
was no doctor to tell you that you were self-harming so you needed
this drug. Self-harmers got together; they worked out what they
wanted; they worked out what worked for them; they worked out
what they needed and, because there is no medical model alternative,
it has been adopted and it is now clinically approved by NICE
and is effective.
Mr Harrop: The examples that have
already been given about choice over a package of care through
individual budgets are very strong. The analogy in the NHS is
the Expert Patient Programme where people with long term disabilities
become co-producers in their own care and indeed peer-supporters
for other people with the same conditions. That has been extremely
successful. Another example is where service users, or individuals
with experience of the service, are involved in inspection or
where the views of the users are really built into the performance
assessment process. That is at least beginning to mainstream all
of this into the performance levers that really matter to the
service managers, instead of involvement being seen as a nice
add-on. The final point is about national level influencing where
new techniques for involving service users and the wider public
in shaping policy debates are beginning to really take off. In
particular deliberative approaches, such as citizens' juries,
are really beginning to have an impact on policy debates.
Q381 Kelvin Hopkins: That is all
interesting and very positive. People come to my surgery, many
of the service users you talk about, with problems. Invariably
it is essentially about resources, people for example who have
been moved involuntarily from one care home to another because
the council has slashed the budget and closed the care home, or
squeezed more people into home care. They are very disturbed about
this. There are also shortages in mental health and there was
a participatory unit of the kind you support in my constituency.
But with budget cuts it was closed down. All of this is about
budgets. Is there not a danger that government is moving towards
a situation where they decide a budget for you and you have no
real control over the size of those budgets because it has in
a sense been de-democratised, with services handed over to service
users and not sustained by society as a whole. Is there not a
danger that we are moving back towards the kind of world we had
before there was a welfare state which actually meant that lots
of people did not get what they needed?
Mr Harrop: The issue you are starting
with is who decides how big the budgets are. That returns to my
opening comments about national standards and the public's disapproval
of postcode lotteries. You are always going to need a national
policy framework. Turning to your example of residential care
closures, which of course Age Concern is deeply concerned about,
this is a very good case study in how national standards and user
involvement can go hand in hand. There is under the Human Rights
Act a requirement that the needs of residents are taken into account
when a home is being closed. To do that properly you need user
involvement. It may not affect the actual closure but it will
certainly affect the way it is managed and the future of the resident,
such as where they want to go. This is a `life or death' issue
because rates of mortality in the weeks that follow older people
moving between institutions are exceptionally high. I would say
we can knit the two together.
Professor Beresford: What you
have highlighting for us is that we are, at the end of the day,
talking about political issues. In a piece of work we did, we
talked to a range of people, not only service users but including
service users, particularly including older people.[6]
We found that that issue, which is so often talked about in the
media, about people becoming divorced from political processes
and activity was very true for them. People were getting more
and more fed up with conventional political involvement and were
turning instead to the kind of involvement that we have been talking
about today, seeing it as a more viable alternative. Some of the
groups we have been talking about today are those with the least
political clout. That is where these two things have to come together.
Through getting involved people may be able to exert some political
strength which otherwise they may not be able to exert as groups
that are not seen as having much political strength or importance.
It is not just a matter of resources. I would be the last person
to deny the importance of money, budgets and resources. You have
to have funding but one of the things that has come up from a
number of the examples today is that culture too has needed to
be changed. The sorts of services and support that have been routinely
provided have needed to be re-thought. User involvement has really
made that possible. We have heard about it with direct payment,
individualised budgets, user led services, with non-medicalised
approaches and so on. These are major, fundamental changes which
are going to be taken forward further. There is a need for a culture
change as well as a budgetary investment.
Q382 Kelvin Hopkins: Liz mentioned the
case of one of her user associates who had an advocate who developed
a precise environment which would help this person and was most
appropriate. But if that was done for everybody they would all
want possibly more than is ever going to be provided by governments
who are constantly concerned about keeping down levels of public
expenditure.
Ms Stone: Do you not think it
is that we really have an odd attitude to how we give social care?
We put people in groups. We lump them all together and we say,
"Here it is. You go and park there." When I am old I
do not want to live in a care home. I do not want to live in a
congregate setting with loads of other people. I have absolutely
no desire or wish to do that. Where we get stuck is that we have
a model and we try and make that model work instead of saying
that that model is broken and it's never going to work so why
not start again. Why not create something completely different?
It does not have to cost more. Some of the evidence that is coming
out of In Control and individual budgets is that it really does
not cost more.
Q383 Chairman: At a general level
all of this is easy to have the discussion. It gets harder when
we get involved in particular cases. I have a raging issue in
my area of Staffordshire at the moment where the county council
want to reconfigure radically the provision of services for the
elderly and those with learning disabilities. They say we have
a system which has been condemned by inspectors as being too institution
based. We have to turn it round radically. The people who are
fighting against that are the existing users who say, "You
are taking our services".
Ms Stone: Is that not possibly
being driven by fear? This service may not be marvellous but it
is all I have? If it goes, what am I going to have?
Q384 Chairman: No. It is a real tension
because the providers say, "Although we are taking care of
existing users, we cannot meet the needs of those who might be
users because existing users are taking up the whole institution
based service. To meet the needs that are coming along in the
future we have to change the service and get them out of institutions
into a more disaggregated system." For the existing service
users and their families this system is working admirably and
they are ferocious campaigners to defend it.
Ms Stone: But is it working admirably
because they do not know what the alternatives might be?
Q385 Chairman: It just shows that
it is more complicated to work out exactly who is the voice of
users.
Professor Beresford: There is
no one voice. Let us be honest about it. It is never in the sorts
of circumstances that you are talking about whether it is the
person who directly uses the services or their loved ones who
are very fearful about what might happen to them who is speaking.
That is what has been the problem with public policy. There has
been X policy for 20 years—for example, the institutionalising
policy—and then we must de-institutionalise. The person
is suddenly left to change their life dramatically. The issue
of fear mentioned by Liz is terribly important. We know from a
study we did in association with Leonard Cheshire, that people
would sometimes rather stay in a residential service, not because
it is what they want but because they are uncertain how reliably
community services will be provided outside. Things change. Eligibility
criteria change. They might move; it is different somewhere else.
Your point is a valuable one about current users and potential
users. One of the things that all of us have some responsibility
for is failing to engender a national debate in public, making
this a higher public priority so that people can think through
these things, because if they do not get on the agenda they are
not discussed and they need to be. People do not want to see themselves
as service users and are quite happy for it not to be discussed.
We know this is becoming a concern. The Commission for Social
Care Inspection is raising a real concern that people are assuming,
when they get older, they will get support from the social care
system but probably most will not. That is your point. We have
to have more public debate about this. This is a valuable step
towards that.
Q386 Kelvin Hopkins: To push Tony's
argument a bit further, it sounds a little bit like an ideological
argument, that of the de-institutionisers, if you like, which
we have heard for 20 years or more. I have constituents who desperately
want either to be in residential care or have their family looked
after in residential care. I know of pupils who are being forced
into mainstream schools. They and their parents want them to be
in a residential special school but they are not being allowed
to because care in the community is now the ideology of the day.
Ms Stone: Integration in schools
is poorly funded. Teachers are not trained. It is not set up to
work.
Q387 Kelvin Hopkins: With respect,
I have heard all these arguments before, that we should leave
it to the teaching assistant permanently designated to the special
needs child.
Ms Stone: That is not what is
going to make it work. If you have a child with special needs,
you give them a teaching assistant. You put them in a mainstream
school. They do everything with that teaching assistant. They
have separate activities. They go into the playground with the
teaching assistant. That is not integration. That is putting them
in a different place and that is why it does not work. Integration
is about a culture change and about the school seeing that individual
as as valuable and important as everyone else. I totally understand
that you think perhaps myself and my colleagues have a very ideological,
unrealistic, impractical view but it is because we do not ask
the right questions and we do not offer things in the right way.
Mr Holmes: If I have spent 20
years going to a day centre being told that all I am capable of
doing is drinking tea and doing a jigsaw and then someone tells
me the day centre is closing and I am going to get a job, I am
going to fight to keep the day centre. As a parent, if an expert
or a professional comes and tells me my child has special needs
and needs to go to a special school, the system is self-perpetuating
by the professionals, from psychiatry to drugs companies. It is
a very powerful vested interest, politically and economically.
It is not in psychiatry's interest or the pharmaceutical companies'
interest to say that that child does not need to go into an institution
and be drugged. That child needs special care in the community.
Professionals tell parents that their children need to be institutionalised
or separated and parents take that on board.
Q388 Kelvin Hopkins: In essence user
power is what you are talking about and individual choice is what
you are talking about. Some people are making individual choices,
it seems to me, and are being told, "No, the provision is
not like that any more."
Mr Holmes: It is informed choice.
Professor Beresford: That is where
there is a lack of fit. In a way, you have hit one of the nails
on the head here. There is a lack of fit between the ideal of
user involvement which is a very practical and workable ideal
and the fact that policy tends to work in very uniform ways. To
give an example, I know from work I am doing in the locality where
my university is based that there is a national policy which is
moving resources from traditional day centres and mental health
service users to a policy of them being moved into employment.
For some people, at the moment that is not workable and it means
that they are losing a major place that keeps them okay in life,
where they can have contact and do things they enjoy because the
policy has shifted. We have to find a way of not just doing that,
not moving from one uniform policy to another, but of realising
that times will change and that what is on the tin is not always
what is in it. Integration has not been done often very well;
it has just been about relocating somebody without adequate support.
That is why I think we have to put user involvement first. It
really is about addressing very seriously with service users and
those close to them what it is that they need that will work for
them to enable them to live their life to the fullest that is
possible, on as equal terms as possible, what people call independent
living. I think rather than the way social care often works, which
is to wait till things get disastrous and then send the fire brigade
in when so much damage is done, if we started to think about independent
living and we had a broader cost-accounting idea in our head,
we might see that it could in a broader sense make many savings.
In narrow terms perhaps it would not and the issue you raised
would always remain: there would be more people wanting it, but
if people are enabled to contribute more, to avoid things getting
worse, that does have a bearing and that is what service users
are always asking for when you ask them.
Mr Harrop: I agree with a lot
of what has just been said but services for older people with
disabilities are, let us face it, chronically under-funded.
Professor Beresford: Hear, hear.
Mr Harrop: We can talk as much
as we like about user involvement and more personalised tailoring
of services but when we have the funding crisis that we do for
older people's social services there is not much progress to be
made.
Q389 Chairman: Thank you for that.
Let me ask you this to end. How can I put it? I have been talking
about user involvement for as long as I can remember. We have
heard, in some ways, of improvements. Users are on the scene in
a way that they were not and we have talked about their role in
inspection and as expert patients. There is a whole variety of
ways in which users are more involved. If we can identify, as
it were, the next step what could we now do that would really
make a difference? This is perhaps an impossible question to ask
but is there a shortish answer to it?
Professor Beresford: I think we
all have our shortish answers. The one that I would offer is the
one that is based on as long a period of evidence gathering as
you have had about your involvement. First, we really must do
more to address diversity in involvement to make sure it is not
just a narrow range of people who can get involved, and that will
take more work. We are finding out how to do it and we will feed
that back to the Department of Health and other departments. It
can be done. Second, and this is a recommendation, as I have said,
of the Prime Minister's Strategy Unit, which is being taken forward
by the Office for Disability Issues, is to establish a national
network of local service user organisations. They seem to be the
best way of enabling broader involvement. That is the evidence
time after time, that this is how people can gain confidence,
gain skills, get to understand things, operate locally as well
as operate more strategically at policy level. The Government
is saying it, we are saying it, "this is a crucial way forward".
Mr Holmes: I would like to second
everything Peter has just said and just add that there is no point
doing service user involvement without funding it properly. It
is just a waste of everyone's time and effort. If you are going
to fund it properly do not waste the money. Have some mechanism
that ensures that what is said or what is consulted has some impact.
I have been, on behalf of Enfield Mental Health Users' Group as
director, to endless consultations with 450 service users that
took us six months and then were completely ignored. There has
to be some kind of come-back. Somebody must be responsible somewhere
for making sure that the views expressed have some impact on services;
otherwise it is tokenistic and a waste of your money.
Mr Harrop: I have some positive
and negative reflections about the future. Positively, there is
cultural change within public services. I think we would all like
to see it move faster but I do acknowledge the progress that has
been made. Personalisation of services is having lots of knock-on
benefits around engagement in general. I think that it needs to
be focused around a much more rights-based approach so that personalisation
is seen to go hand in hand with clearly articulated and communicated
standards that everyone is entitled to: that is achievable. My
more negative reflection is about the wider issues of public civic
engagement. That is an area where there has been political debate
for at least a decade and I do not think there has been much social
change. If anything, the public's desire to get engaged is perhaps
going backwards, and I think that is a really difficult one to
crack. It is about local democracy as well as user involvement.
Chairman: I think we are going to park
that one for today.
Ms Stone: I am probably not the
person to ask because it should be someone with a learning disability,
but my two guesses are: do not consult after you have already
made your mind up what you are going to do, which happens all
the time, and think very creatively about consultation, not about
big meetings in big rooms with lots of people there but about
how you can consult and get really useful and meaningful information
and do it in some different very creative ways that actually work
much better for people. A lot of people that I have talked to
say, "We are asked what we think, we say what we think, and
then either nobody takes any notice or it does not make any difference",
and I think that is a really important point, that people see
that their opinion is valued. They may not always get everything
they have asked for but if they can see they have been listened
to and it has had an effect that is really important.
Chairman: Okay. I suspect you think,
Liz, that this is a very old-fashioned way of consultation, what
we are doing today, and you are probably dead right about that,
but with all its limitations it has been extremely valuable and
we are very grateful to have had you along. If you want to tell
us things in addition to what you have said today by all means
do and we shall try to take advantage of it, but for the moment
thank you very much for this morning.
4 The Joseph Rowntree Foundation, Mental health
service users and their involvement in risk assessment and management,
April 2004. Back
5
The National Institute for Health and Clinical Excellence. Back
6
Karen Postle and[nbsp]Peter Beresford, "Capacity Building
and the Reconception of Political Participation: A role for social
care workers?", British Journal of Social Work, Volume
37, Number 1, January 2007 , p 143-158 Back
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