Examination of Witnesses (Questions 364-379)
PROFESSOR PETER
BERESFORD, MR
DAVID HOLMES,
MR ANDREW
HARROP AND
MS LIZ
STONE
26 APRIL 2007
Q364 Chairman: Can I welcome you this
morning. I am sorry that we are slightly depleted. There are things
like local elections going on which have drawn people away but
we are extremely glad to have you along to help us with our inquiry
which goes under the broad heading of Putting People First. We
are delighted to have Professor Peter Beresford from the Shaping
Our Lives Organisation and Network, David Holmes from Mind, Andrew
Harrop from Age Concern and Liz Stone from Mencap. Thank you very
much indeed for your time this morning. We are worrying away at
all the issues surrounding the role of users of public services
and that is why we wanted to talk to you all because you all bring
something to that discussion. Can I start off by asking why we
should be worrying about this? Why is it important to worry about
the role of users?
Professor Beresford:
I am happy to start but I would be very grateful if I could have
a chance briefly to introduce where we are coming from in Shaping
Our Lives. We have been established for 10 years. I am a long
term user of mental health services and Michael Turner behind
me is a disabled person. I am the Chairman of Shaping Our Lives,
Michael is on the Management Group and we have a network of service
users. We are a national independent and democratically constituted
organisation and we work across a wide range of service user groups—older
people, people with learning difficulties, mental health service
users, palliative care service users, people with HIV/AIDS, disabled
people and so on. Our concern is the issue that you began to address,
making it possible for service users to have more control over
their lives, a better quality of life and more say in the support
and services that they receive. We have prepared papers for ministers
and we have prepared consultations for White Papers and Green
Papers. I was thinking before coming here about more general answers
to that kind of question and I thought about a book I have just
read about the Battle of Britain. I hope this will seem very relevant
because I think it is intensely relevant. I was at the exhibition
there was recently about the Spitfire. The Spitfire was the only
British fighter aircraft of the last war which lasted the whole
war. They introduced it; it was very well engineered, but what
they also realised was that it was important to know how well
it worked in practice, so people from the factory went and spoke
to the pilots who were using it in the Battle of Britain and then
one of the test pilots was short-term commissioned into the Air
Force to fight in the Battle of Britain to improve the aircraft.
That is what we are really saying, that if you want good quality
support and services then the people you really must speak to
in order to find out what they want and how well it can work are
service users. We would say that there has been progress in recent
years but it definitely works, we know how to make it work. We
would also say from the work we have commissioned that there are
some groups who particularly seem to be at risk of not having
their views heard. A crucial way of making it possible for as
wide a range of people as possible to be involved in meaningful
ways, and that really means the possibility of making a difference,
is by supporting, as the Prime Minister Strategy Unit report Improving
the Life Chances of Disabled People said, a network of local
user-controlled organisations where individuals can gain confidence
and skills to respond to opportunities, to get involved helpfully
and to make that difference individually and together with services.[1]
Q365 Chairman: I am grateful for that.
The example you give is of particular interest but it prompts
in a way the next question which I will try on all of you. Considering
the argument that there is information needed by providers which
is held uniquely by users. That is not in itself an argument for
forms of user control, which you then went on to talk about. You
could have knowledge of users through a variety of mechanisms,
so are you not conflating a number of things together? What is
it that we are really after here, or are we after a whole range
of things that might happen in different ways at different levels?
Mr Harrop: If I could come in
from Age Concern's perspective, Age Concern perhaps has a slightly
different take because we try to represent all older people, some
of whom are intensely engaged with services as regular clients
while others have less day-to-day contact and certainly would
not be interested in becoming involved in the management of services
that they may use less frequently. I think that underlies the
point you are making, that you do need to take a varied approach
and fit the model to the circumstances: accept that different
people aspire to different levels of engagement with the services
they are using. I think the best example of this is the housing
sector where you have a really wide range of approaches from direct
tenant management through to much looser models of involvement,
with things like representation on boards.
Q366 Chairman: The Age Concern evidence,
which you remind me of in your answer, was particularly interesting
in that you were out of step with much of the evidence that we
get because you were pretty resolute in your opposition to thorough-going
decentralisation, diversity, as it were, certain versions of individualisation
and choice. Your argument was—you had better tell me if
I am wrong—that you think the people you represent want
the same services to be provided everywhere and therefore all
this nonsense about choice and difference and all that is beside
the point. Is that right?
Mr Harrop: I think that we have
to address the tensions rather than suggest they do not exist.
Whenever we ask older people what they think, either in quantitative
ways or in things like focus groups, they stress the importance
of national uniformity over postcode lotteries. That informs our
policy approach in, for example, how much local discretion there
should be in social care. But the world is moving on as well,
and we have also welcomed things like individual budgets that
give individuals control over their services. I acknowledge to
you that there is a circle to square and we are struggling with
these issues, as I suspect you as a committee are. National standards
will always have an important role in shaping services.
Q367 Chairman: What do other people
think about this tension between uniformity and individualised
self-control?
Professor Beresford: Could I pick
up on that, because I think that this is a circle that can be
squared. We did work which the Department of Health funded us
to do about what was called user-defined outcomes. There is a
great interest in quality measures, one of which is outcomes,
but what we wanted to find out was what kinds of outcomes did
people as service users want because often the discussion about
outcomes has been framed in what professionals or managers think
should be the outcomes of provision of services. What we found
from our project, which Michael was involved in carrying out,
was that, as has been suggested, there were standard things that
everybody wanted around quality but each individual within that
would have particular priorities and preferences. Interesting
you could see that the general things that people wanted corresponded
to the rights that they might have—the right to be able
to get about, to have company, to have a decent standard of life,
but the individual, idiosyncratic bits were about how someone
might want to live on a day-to-day basis, what kind of home they
would like, what kinds of social relations and contacts, so I
do not think there is a contradiction or a difficult tension between
individualisation and collective standards. We can reconcile the
two, particularly by listening to what each person would want
for themselves.
Q368 Chairman: Let me bring Liz and
David in.
Mr Holmes: We very much appreciate
the opportunity to give evidence here today. We think it is very
important that you are listening to us and if any member of the
Committee or the Committee as a whole would like to come and meet
some of our service users and survivors who might be able to answer
that question in their own way we would be very happy to facilitate
that. As for the issue about service user involvement versus service
user control, 25 years ago service users and survivors were nowhere.
They were invisible. Over the last 25 years they have become visible
everywhere. They sit on committees, they get invited here. Twenty-five
years ago you would not have been sitting listening to a survivor
of the mental health services talking to you directly, let alone
two. In our experience the reason people have started to seek
user control is that the mechanisms and involvement do not seem
to have brought about the changes they would like. They have been
consulted but they seem to have been excluded from the real decision-making.
In relation to some things we have called for over a very long
period of time, particularly independent testing of drugs, regulations
on psychiatric powers, the move to a social model of disability
rather than a medical model of disability, or at least the option
to choose socially based care and treatment, these are people
who have been in the revolving door system many times. They all
go in knowing that these drugs do not work for them, this treatment
does not work for them, this is not going to help them get better,
but they tell people what they want and they do not get it. If
service users were truly heard and services were truly responsive
to their needs then I do not think that issue of control would
come up. I know what I want from a fire service. I do not want
to be a fireman, I would be a pretty crummy fireman, but if I
keep asking the Fire Brigade to come and they do not come I might
then want to be trained up in it myself. I think user control
is partly an act of desperation, so if services are responsive
to what people say then great, but if they are not then we have
to seek other solutions.
Q369 Chairman: That is an interesting
take on it. We will see if people want to explore that a little
bit later. Liz?
Ms Stone: I would just like to
make the point that I am actually not the person that you should
be talking to. I was really hoping to be able to bring a colleague
with a learning disability with me today and we were informed
that that was not appropriate. That was a great disappointment
to us because obviously I can tell you what people tell me and
I can tell you why we do what we do and the way we do it, but
I cannot talk to you from a service user perspective, so Mencap
was quite disappointed that we were not able to bring someone
with a learning disability.
Chairman: I have no idea why that was
but now you have told me I will find out.
Ms Stone: Just to pick up on the
point that was made about individual budgets, which is quite interesting,
a lot of service users are really welcoming individual budgets
and being able to have a service tailored really around them and
what they need, and the whole movement for that individualisation
of service and budgetary control comes from people with a learning
disability. It comes out of person-centred planning and it comes
out of looking at services that are completely broken but really
do not meet people's needs and saying, "How do we do this
differently?" and starting with each individual person. Another
quite interesting thing that is starting to emerge from individual
budgets and therefore individual control over your daily care
and support is that it is cheaper. It is actually a much better
way of doing it from the point of view of the individual but also
the staff that support them. It is a much more enjoyable and rewarding
job and it costs less. I think it is worth making the point that
that has come directly from a group of people who are marginalised,
not listened to, not valued, and through their movement they have
effected change for everyone.
Q370 Chairman: I want to pick up
David's interesting point where he talked about the movement towards
user control—we are going to talk about co-production, this
horrible phrase. You called it an act of desperation and I would
like to know what people feel about this because the argument
presumably is that if users of services were simply treated properly
routinely, and if the relationship between the user and the professional
and the service was right, then, as it were, you would not have
to worry about these higher forms of involvement. I just wonder
if that is broadly the line that you would subscribe to.
Mr Holmes: As you ask the question
of my colleagues I will let them speak in a second but I will
say this. If I felt that mental health services would be there
in a form that was meaningful and supportive to my wife or my
children should they need them then I would go back to my old
career. I would not be sitting here, I would not be walking round
doing this. I had a life. I could have a life again, but I will
not have my children or my children's children or my friends'
children or anyone on an acute mental health ward in the current
system.
Professor Beresford: Can I pick
up on that because David and I both speak from the perspective
of being mental health service users and it is not an identity
that most people really want to go and tell the world about. It
is a very devalued, stigmatising identity. You come to realise
that you will only be able to transform understandings of that
identity, what people like you are really like, and make a difference,
which is still needed, as David has suggested, if you come out
as such a person. In an ideal world what you are saying would
be true but unfortunately we do not live in an ideal world. That
is why people as workers, as managers, as politicians, as other,
form their own groupings, not only to be in those groupings but
as a starting point for working out what they want to do together
to try to make a difference, to try to improve things. I think
that is what we and an organisation like Shaping Our Lives do.
We have very close contacts with organisations around this table,
with politicians, ministers and others, but we realise that for
people to start in their own grouping is a way of getting confidence,
getting involved, taking new steps but moving on and moving out,
not sitting in some separate place but having that as a starting
point, and all the signs are that it really does make a difference.
Mr Harrop: We live in a world
where service delivery is ever more diverse, so there should be
a place for user control where that comes from groups of people
wanting to do things for themselves, not necessarily as the only
model, but people involved with services need to be engaged in
one way or another; it may not be control but they need to be
at the top table, for example being involved in inspections or
giving regular feedback, not just the traditional model of low-level
consultation or customer satisfaction surveys.
Ms Stone: From the people I know,
if you are part of a group that is generally devalued plus you
as an individual have complex communication needs, it is much
harder for you to communicate with the world and you miss out
on all the things that we would take for granted. It is simple
things. I expect this morning when you got up you did it in much
the same way that you do every morning. If part of that morning
routine goes out of the window, that may well put you in a grump
for the rest of the day. If your morning routine is entirely reliant
on someone else supporting you to achieve it and they do not understand
what you want, they do not understand that you like a cup of coffee
with two sugars and not with milk, that is your routine gone.
You start every day the same way, without being able to get one
or two very simple things that make you relaxed and make you start
the day fresh. That is why for a lot of people with learning disability
they want to be very active in the whole design and delivery of
service because it is about them; it is about you; it is about
your life. If a large part of your life—for a lot of people
all your life, 24 hours a day, right from when you were small—is
given to you by a service, you are disempowered. You want to take
that back and say, "You are not giving me this. I am part
of it. This is what I want. This is my life and how I want to
live it." For a lot of people with learning disability that
is why, when they are asked what they think and how they feel,
they really want to engage with it because it is so personal and
so important.
Q371 Jenny Willott: It appears to
me there are two different levels of consultation and involvement,
one of which is service delivery level and the way people interact
with services, and then there is the policy level. Presumably
there are different types of consultation and involvement at different
levels. Looking at the service delivery level, where service users
are taking advantage of the services or using the services or
giving their views, is it possible that there are some groups
of service users—you cover a huge range of different people,
different backgrounds and different perspectives—that it
is more appropriate to involve at particular depths of consultation
and control than others or is there one rough model that you can
adapt to fit everybody? You all represent different views. For
example, talking about control of budgets and financial control,
is that more appropriate for some people than others?
Mr Holmes: All groups of people
should be involved at all levels.
Professor Beresford: But there
are differences. If I could give one example, it is an example
where people have sometimes said perhaps they should not be involved;
it would be inappropriate, unfair and burdensome. It is people
who use palliative care services, people who are facing life limiting
terminal illnesses. We did a big project where we spoke to more
than 100 people in depth who used such services to ask them what
they wanted from social workers.[2]
It is clear that people do want to contribute their views and
they can contribute them if they are sought in appropriate and
sensitive ways. One of the things I have been involved in as a
user consultant has been an initiative set up by Help the Hospices.
They have set up a service user group. There are all sorts of
issues of support, the fact that people in that group know they
are not going to be here forever, but only for quite a short time.
People have good times and difficult times. You have to make sure,
for example, that perhaps the oxygen is there for somebody and
so on, but people do want to be involved in all sorts of ways.
Different people want to be involved in different ways. I think
what you said was terribly important, to distinguish between the
policy level, which is unfamiliar territory for many people and
people will need training and capacity building to become more
familiar and experienced; and the level of direct contact with
services. Not everybody in the future will turn to individualised
support and there will always be some sort of collective services
but it seems to me that what is crucial is that real involvement
starts with practitioners and professionals, that they learn to
work, to practise. That is what came strongly from the palliative
care example. They learn to practise in a way where they are always
asking, checking out with the service user: "What do you
want from me? How can I usefully help?" They do not have
their own agenda which is then imposed on the service user. It
is a process of co-production because that is the only place that
naturally and routinely service users all have contact with the
services and the people who work in them. It gets neglected but
it is awfully important. It raises big issues there about training
and the future of training.
Mr Holmes: I was talking to someone
who had long term HIV/AIDS the other day. He said that services
had completely gone downhill since the medical advances had happened.
In the early days of his diagnosis—he has been diagnosed
for 10 years—everyone said, "What can we do to make
your life better?" Now that there is medical intervention,
everyone is saying, "You must take these drugs because they
will keep you alive longer." The drugs stop him working.
They stop him having a sexual relationship with his wife and they
stop him getting out of bed in the morning. No one is interested
in the quality of his life any more. They are only interested
in the fact that they can make him live longer. If someone stopped,
talked to him and asked him what he wanted, he would tell you
that he wished the drugs had never been invented because before
they were all that people were concerned with was quality. Now
the concern is just around the extension and quantity of life.
No one is listening to him.
Mr Harrop: I would like to go
back to your original question about whether services should try
to reach out to everyone. The presumption should always be that
that is so. The early implementation of direct payments which
led to individual budgets often worked on the assumption that
many older people would not be interested, so it was not worth
asking them. The presumption should be the opposite. If people
are saying, "No, I do not want to be engaged" that is
probably the service provider's problem, about the offer they
are giving, and nothing to do with the individual. This is about
more imaginative ways of reaching out to individuals. To reflect
on Professor Beresford's point, I think we have a bit of a dichotomy
between on the one hand what we call choice or individualisation
and on the other collective representation in shaping the broad
architecture of services. The individual choices on offer are
often very narrow, particularly in the NHS context. We need to
get to a situation where we see user engagement being about both
collective and individual preferences; being able to shape quite
widely the service architecture as well as individual choosing,
as is often the case at the moment.
Ms Stone: I have done some work
over quite a number of years with Warwickshire social services.
They have a big conference every year called Customer First. It
started off very small and over five or six years it has really
grown. At the last one I think there were about 300 people. They
include people from all the different groups that use social services.
We designed the whole consultation around the needs of people
with a learning disability but it works for everyone and we do
it in the same way. What is really interesting is that everybody
wants the same things. Nobody wants anything shockingly different.
By looking at people as a whole as a group, as people who use
services and working out what different people want and how they
want it, you can really see areas where you are spending money
in two ways when you could spend it in one. People who come along
to those consultations really value them because it is from the
personal into the collective. People can really see how they are
playing a role in their community and how they are making change.
They are quite interested in the money. They are interested in
knowing how much gets spent on this, how much gets spent on that.
If we take it away from that, what is it going to go on? If we
take it away from that, what effect is it going to have? They
might not be interested in the absolute numbers but they are interested
in the notion that there is only this much money; what are we
going to do with it and being able all together to contribute
to the decision making on that.
Q372 Jenny Willott: One of the things
Andrew said was around if somebody says they are not interested
in participating it is a problem for their service provider. Is
there too much pressure on service users? Is it possible that
there are people who do not want to participate if there is an
expectation that they should be involved and interested? Is that
an unrealistic expectation on everybody?
Mr Holmes: I have never met anyone
with experience of mental health services in particular who did
not want someone to listen to their story, who did not have a
viewpoint on what happened to them.
Q373 Jenny Willott: What about when
they are receiving the service?
Mr Holmes: I invite you to attend
an acute mental health ward and sit down in the day room. Most
people would beg someone to sit and listen to them.
Professor Beresford: There is
another side to the story which underpins your question. People
do talk a lot and have talked increasingly about things like consultation
overload, consultation fatigue, being all consulted-out. In part
it is about there being more and more requirements on services
and authorities to consult with different people, different service
users, and sometimes that's being done in what people call very
much a ticking boxes way, where it does not necessarily feel that
the consultation is connected with how a change is going to be
made. Getting involved as a service user does not mean you will
get everything you want. It does make possible the negotiation
of different interests. Many service users who get involved come
to realise that, but if serious mechanisms for making that connection
between policy change and involvement are not in place people
get frustrated. I think people often ask—we certainly experience
it; we found it in a recent study—"what is the point
of getting involved if they are not really going to listen?"
If people know that people are listening and trying, although
you may not get the moon, that is a different kettle of fish and
then it is absolutely what David said.
Q374 Jenny Willott: Is there a difference
between, for example, mental health services where I know that
some services are fairly horrendous, to put it mildly; whereas
for example the facilities that are offered to older people in
terms of community support have been improved significantly over
the last 10 years? Is there a point where, if there is a serious
issue and a serious problem with the services provided, people
are interested in getting involved because they can see the difference
that needs to be made; whereas once you have actually have significant
improvements in a service then expecting people to keep participating
is too much of an expectation.
Ms Stone: I think it depends how
you do it. What Mencap would say is that there are loads of different
ways of consulting and that sitting round a table talking is not
the best one. People with a learning disability would want the
opportunity to express what they think and feel in loads of different
ways. Even if you are experiencing a service that is working and
that you are enjoying, you still need to be asked whether it carries
on doing that or whether your needs change. You cannot assume
that Sarah has got what she wants; that is great. You need to
check in however many months' time that it is still what Sarah
wants.
Mr Harrop: The answer to your
question is going to be very dependent on what level of engagement
you are talking about (within the concept of the ladder of participation).
When you are talking about quite active engagement, the issue
is about a minority opting in rather than some people being excluded
from the process. We worry whether that minority is sufficiently
representative or connected to the people that they in effect
are speaking on behalf of, without necessarily realising it. That
is one set of issues. The other set of issues is about engaging
with everyone. I agree that if you ask the right questions in
the right way no one would refuse to engage, unless there is a
problem with the underlying services they are receiving. It may
be the service, not the involvement mechanism, that has created
the detachment.
Mr Holmes: If my child gets into
the best school in Kent, that does not mean to say I will not
join the PTA.[3]
Involvement is about sustaining good things as much as about improving
bad things. It is a way of sustaining improvement and of progressing
because there is no such thing as a perfect service for everyone.
Just because it is okay for you as an experience does not mean
to say it cannot be improved or you do not want to help maintain
it.
Professor Beresford: We have been
talking about whether people might want to be involved. One of
the things that has been a consistent finding for us, coming out
from a big project which we are undertaking called Beyond the
Usual Suspects, which is being funded by the Department of Health,
is where there are seen to be particular barriers in the way of
the involvement of some particular groups. Some of them have been
mentioned. It includes people who communicate differently—for
example, non-verbally, using communication assistance—people
seen as having profound or multiple impairments, homeless people,
refugees and asylum seekers, people whose support costs are seen
as too expensive, people in prison in the penal system, people
with drug and alcohol problems, people from black and minority
ethnic communities, deaf people and people with hearing impairments.
I have to say the largest group but sometimes the least involved
are older people, people who live in rural and country areas with
many transport problems, parents with young children, people who
are seen as perhaps being a bit too capable of speaking for themselves
but may not say what is wanted, and again, and it is a general
issue, people with learning difficulties I think face particular
obstacles generally. What has been said is right, that the issues
are the same for everyone, but some people do seem in practice
to face particular barriers and maybe organisations are not so
good at recognising how to ensure proper and equal access for
them.
Q375 Jenny Willott: My next question
links into what a couple of you have said already. When there
is consultation going on more at a policy level than a service
provision level, how do you ensure that there is a wide range
of people participating and that it is not a sort of self-selecting
group who have strong views, and also does it matter if the group
that is being consulted is representative or not?
Mr Holmes: This is a huge issue.
First of all, involving everybody is a great ideal and obviously
should be pursued, but there is no point involving people who
have not been given the skills, the knowledge or the time. Mind
is faced endlessly with requests to respond to consultations on
behalf of service users. We often do not have time to do as much
to bring in our networks as we would want. We have over 2,500
people we can talk to but we would really benefit from time and
resources to go out and do more assertive, positive things to
get people in from marginalised groups, and to support people
to develop the skills and the knowledge which allows them to make
informed choices. Part of the reason some people are self-selected
is that they have chosen to dedicate their lives to this thing,
and who do you want? Do you want to hear from a lot of people
who have not been given the time or the skills or the chance to
get to grips with the issue being consulted on, or do you want
to hear from people who understand the policy and all the ramifications
of it and also have taken the time to talk to the people who use
services but who have not had this chance?
Q376 Jenny Willott: So in your view
it does not matter if they are not representative demographically
or whatever?
Mr Holmes: Are your constituents
mainly white females?
Jenny Willott: Probably, actually.
Mr Holmes: Do you have a degree?
Do most of your constituents have a degree? Does that exclude
you from representing them? The other issue around representation
which I find really unhelpful is that for 11 months of the year
I am a married professional, I am married to a professional, I
have two kids, I live in a bungalow in a Kent village. I am a
member of the local community and I am perfectly capable of understanding
a strategic document on policy, any policy, and I am not representative
of mental health service users. For one month of the year, usually
February, I am a mess and I am dealing with demons that take physical
form and eat my head, and when I cannot subdue them with alcohol
I get medicated up and probably chucked on a ward, and then I
am representative. Now I can come and talk to you about your policy
document.
Q377 Jenny Willott: What do the others
think?
Professor Beresford: We are not
representative because I think that is an illusion, but we seek
to be inclusive because it cannot be right to leave out whole
swathes of people, and there are people you have to reach out
to more actively than others, and we need to be honest about that.
It is true: when we first started to speak, speaking to anybody
was important but, as has been said in the mental health field,
it is not enough to consult with mental health service users generally
if what you want to know about is what the experience is of people
using forensic services. In that case you need to be talking to
people using forensic services and so it goes on. Women should
not be spoken on behalf of by men. White people should not be
speaking for black people. That means we have to put more effort
into it. More effort does, I am afraid, mean more resources and
that is the difficulty, that good user involvement—although
I personally believe it saves money at the end of the day because
it means you make better decisions and provide more appropriate
services—does have its own realistic costs. To make it possible
for someone to come to something might mean you need a palantypist,
you need an interpreter, you need a supporter for people with
learning difficulties and that costs money, but it then makes
it possible to counsult properly.
Professor Beresford: Time is a
big thing as well. We noted in our submission that people with
learning disabilities are more and more becoming advocates for
people with profound learning disabilities, but in order for the
advocate to find out what that person wants it takes a long time
developing a relationship and then understanding. Most of my team
are people with a learning disability. Some of them are great
public speakers and really enjoy it. Some of them loathe it and
will not ever do it, but when we are doing training or whatever
we are delivering, they all want to be part of that development
process; they all want to be part of the design of it and how
it is going to work, so I think everybody should be given the
opportunity to participate but you have to be creative; you have
to do it in different ways and you have to allow time.
Mr Harrop: I think there is sometimes
too much focus on whether the representative is working on behalf
of a client group, or is a member of that client group; you need
both, but both can be good or bad. A member of a client group
can be completely unrepresentative and not have taken the trouble
to find out what their peers feel while an organisation working
on behalf of a group can be extremely patronising and paternalistic
or it can be genuinely committed to involving its users in everything
it does and therefore is a very appropriate channel. I think the
voluntary sector does have a heavy responsibility to take its
role as a channel and conduit seriously and professionally. In
the older people's `world' there is a major problem of lack of
engagement. For example there was a consultation last year on
the future of equality in Britain. Three older people's organisations
responded, all of them organisations `for' older people, not `of'
older people, so I accept that there are major challenges in this
area.
Q378 Chairman: The Government wants
the third sector to be involved in delivering services. Does that
compromise the role that you play in relation to users?
Mr Harrop: I think there are different
answers to that question at national and local level. I think
well established national organisations have the independence
and the public support to both provide services and represent
users and campaign. But at local level the tensions are much greater
because the funding tends to be much more dependent on one source,
often the local authority or the Primary Care Trust, and there
is a real pressure not to speak out against the hand that is feeding
you.
Mr Holmes: One of our local Mind
associations I visited recently, which is very heavily service
user informed, was offered to provide all its services under new
contracts, and the service users were asking for one set of services
and the PCT were offering funding for a completely different set
of services. I think that can put you in a really difficult position
and actually what they have to do—it is a very complicated
story—is shut half the services. The service users have
agreed to compromise that they want this service rather than losing
it completely, but they would rather lose that service than have
it delivered in the way that the PCT funding require it to be
delivered. I feel sometimes that local Mind associations are put
in an impossible situation. They are told that they have to listen
to their service users—locally they must; it is part of
being a Mind association—who are asking for one thing but
the PCT is offering funding for different things.
Q379 Chairman: But in principle if
Mind or Mencap or Age Concern are asked to be the people who deliver
the services surely this is the biggest breakthrough that you
can get in terms of user improved involvement?
Professor Beresford: The truth
is we have a long history of charitable or voluntary organisations
delivering services prior to the welfare state and since. One
of the difficulties I feel there is with government understanding
is lumping together the third sector as though it was all the
same thing, and actually what there is are some enormous organisations
with multi-million annual budgets and some very modest organisations.
No-one should be saying that the modest organisations are not
doing good jobs but they are often competing in a very difficult
way against much bigger organisations who may have budgets for
their fund-raising which are bigger than the whole budget for
other really valuable local organisations. Also, there are the
organisations which are run by service users which are even less
likely to command adequate resources and we know that there has
been a problem lately of such organisations folding in increasing
numbers. We also know from a national study that was undertaken,
funded by the big lottery, that service users nationally particularly
valued services provided by service user based organisations.
They think they have a sensitivity and a value to them which they
specially want. So there is that difficulty and I think there
needs to be more done on that, more recognition given to how it
can be a more level playing field for all the different kinds
of organisations that make up this very disparate third sector.
Mr Holmes: If I run a local Mind
association and I am given half a million pounds and told to fund
the services that the local people wanted; great. If I am given
half a million pounds and told I have to employ four psychiatrists,
open this building and stick needles in people and use these drugs
on people, that is a different kettle of fish altogether.
Chairman: I am at fault here because
this is a different inquiry. We are doing a separate inquiry on
this but I just thought I would try it while I had got you here.
We may bring you back for some of that.
1 Cabinet Office, Improving the Life Chances of
Disabled People, January 2005 Back
2
Peter Beresford, Lesley Adshead and Suzy Croft, Palliative Care,
Social Work and Service Users: Making Life Possible, (London,
Jessica Kingsley, 2007) Back
3
Parent Teacher Association. Back
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