Examination of Witnesses (Questions 200
- 217)
THURSDAY 30 MARCH 2000
MISS ANGIE
SCHRAM, MR
TONY RUSSELL,
MRS PAULINE
ABBOTT-BUTTLER,
MR LEVI
FERGUSON AND
MS KAREN
CAMPBELL
200. That is a worry.
(Mr Russell) I have been ill and I really worry about
the terminology you use sometimes when you talk about severe,
enduring mental illness at the one end and then the worried-well
at the other end, because I have experienced both extremes of
that. I think it is a dangerous road to go down if we start labelling
people as severely mentally ill or just the worried-well, because
I have been both, and I have been both in the same day.
201. Do you accept that there is a window of
four stages on mental illness, which I find puzzling, because
the determinate seems to be who treats you rather than what you
are suffering from? Have you any experience of that? (Mr Russell)
I have had several different diagnoses, if that is what you mean,
and I guess that depends on who is treating me at the time. That
is why I worry so much about the labels that you tend to use,
because far reaching decisions are made about us by those labels.
202. We were talking about joined-up working
and the difficulties which you demonstrated so well. Do you have
any solutions as to how we cope?
(Miss Schram) It sounds like I am repeating myself
time and time again here. There are some positive examples of
joined-up working and real partnerships out there. Let us see
them used and actually go out. I do not mean held up as an example
and saying, "Aren't they wonderful, because they are working
together?". Let us actually see some of them go out into
other trusts and other social services departments, who are not
working together.
203. I think you are actually making a link
between social services, mental health services, primary care,
housing especially, and giving some of them an occupation that
they can be pleased about doing, whether that is jobs or making
a contribution in other ways?
(Miss Schram) It can still be done that way.
Dr Brand: I asked Denise Platt last week and
she felt that there were no structural barriers in the way.
Chairman: She is the Chief Social Services Inspector.
She heads up the local authorities social services side in the
Department of Health.
Dr Brand
204. In my experience there are all sorts of
strange rules and regulations that cover housing benefit, which
means that they exclude advocacy or the use of CPN and approved
social workers to act on behalf of a patient. The other thing
I got confused about was that you were talking about advocacy
services being essential. I cannot find a good directory of advocacy
services as to which advocate is the most appropriate person to
put the user in touch with.
(Mr Ferguson) I think basically what you are talking
about is having a more holistic approach. I think my opinion is
that there is a culture within the lot of government departments
of holding out information and not sharing information. Everybody
is afraid of relinquishing power. That is really to the detriment
of the people who need to get access to the services. I think
there is a great danger of confusing people, because you do not
actually find a way to pull together a lot of the service provision
that is out there so it can better work together for the benefit
of the user. At the moment the system seems to be working against
people's interests. A lot of times people try and access information
on behalf of clients, ie, people who they care for, and they come
up against a certain attitude and culture. They are only given
so much information, even when you have actually said to one department,
like I have said to the housing benefit people, "Get in touch
with the benefit section", and I said to the benefit section,
"Get in touch with the housing so that we can get to the
bottom of this problem", but you tend to find that even though
it is supposed to go down on paper, the sharing of information,
so that you can get access to the services quickly and easily,
for some strange reason people do not actually like to share information
from different government departments. I think the danger is that
the whole system gets bogged down with far too much red tape and
you actually sometimes make a situation worse for patients and
the carers, because a lot of times there is a tendency that you
are almost driving carers to break down themselves, because you
are a person caring for somebody and you are trying to get access
to information and you feel as if you are not fully able to help
the person who you are given the task to help. You tend to feel
in despair. It just seems ridiculous to know that these agencies,
for whatever reason, do their own thing and they do not put their
heads together and think, "If we actually work together as
agencies we can actually improve the quality of life for the people
we are supposed to be giving these services to."
(Mr Russell) I think what we need is really, in a
sense, a new kind of worker to deal with that. It is like a one
stop shop and there is a missing link. If you are ill you do not
want to go into five different departments, what you want is one
person.
205. Who should be able to work with all the
departments.
(Mr Russell) Yes, exactly.
206. There is a real problem at the moment that
verification has to be done by each individual department and
they will not allow a CPN or a social worker to act.
(Mr Russell) Yes, but if you had a link worker.
207. It may be worth this Committee recommending
the integration of the NHS and the Social Services' Report. Would
you support that direction? (Mr Russell) Yes, definitely.
(Ms Campbell) First of all, I would say that there
are huge structural barriers at the moment and the whole basis
on which the system operates works against people with fragile
mental health difficulties, and I know that from personal and
professional experience. I had the experience of going, two years
ago, to a seminar organised by the head of the Benefits Agency.
We thought we were going to learn how people with mental health
problems could better access benefits and they thought that they
were coming to hear about how they could support people with mental
health problems. It was a meeting of empty minds, because we wanted
to learn from each other, and to me that represents the whole
problem of the system. The All Party Parliamentary Mental Health
Committee, as was about two and a half years ago, strongly recommended
that there be a kind of mental health premium benefit which you
have because you have a mental health difficulty and recognised
the kind of incapacity and disability on a kind of functional
level that sometimes affects you, sometimes not, but it is yours
as a right and you carry it with you as and when and until you
decide you do not want it. So at least you have something there
if your housing benefit book gets lost or if you lose your accommodation,
all the terrible things that can easily happen, at least you have
something coming in. The second thing I would say is that people
can be told to work together, but they will not work together
unless they understand what they are working together about, and
people do not understand what sheer hell life can be, as Mr Ferguson
has described, when you are going round the houses, going down
to one end of town and then the other end of town, then you have
not got the right books, then you have to come back on the right
day, and then you have spent all your bus fare and you cannot
eat for three days, it is absolutely dreadful. Unless there is
a commitment and understanding about mental health distress and
why we need to have these linked advocacy workers, it will not
make any difference.
Mr Austin
208. Can I talk in terms in experience of employment
services? I think most of us would recognise that one of the biggest
difficulties that anybody who is mentally ill has is getting back
into work. Most of us can support the thrust of the Government
initiative of trying to help people off benefit and into work,
but for someone with a mental illness it is my view that the sheer
pressure of that is just too much to cope with. I would just to
like to know what your experiences are, or experiences of people
you know, of the Benefit Agency Medical Service where the individuals
feel they are incapable of work, because of their condition, anxieties
or whatever, where the Benefit Agency Medical Service say they
have a capacity for work.
(Mr Russell) I was persecuted by the Benefits Agency
for several years and that contributed greatly to my ill health,
because they, frankly, have no understanding or conception of
mental illness at all. I won in the end, but it took me three
years to win and I do not think I should have been put through
that. I think the employment issue is also a big one because it
is somewhat ironic that the NHS is the biggest employer in Europe,
or certainly in this country, and what policies and procedures
do they have for employing people themselves that have mental
health problems? I know of two trusts in the whole country that
have a positive procedure for employing people with mental health
problems. So before we start preaching to the outside world and
industry, the NHS itself ought to get its own house in order.
(Ms Campbell) We have great experience of trying to
support people back into work, and there are two parts to what
you say. First of all, the balance test itself is an absolute
travesty, and it is not to help people with mental health problems.
We had something like ten days' consultation when it was put forward,
after it was all put together, on questions like, "Can you
look through a telephone directory on your own?" It is just
not geared-up for people who might be seeing things that are not
there and hearing things that nobody else can hear. Secondly,
the GPs involved were meant to have mental health training and
we heard that they were going to have mental health training.
Well, it has not been apparent to anyone, in my experience, either
written or otherwise. They positively make people's lives hell
by telling them they are fit to go back to work. I myself worked
with some members when it had just come in and I was supporting
our self-help groups in London, and a member came in in great
distress and difficulty. He had travelled all the way from Croydon
to Kingston, which was a big deal for him, absolutely at the end
of his tether and saying, "I think I'm going to kill myself
because it is so stressful." I managed to support him and
help him out of it, but the thing was that he was getting these
dreadful letters that meant nothing to him and they obviously
did not understand what he was going through. I think that creates
the first barrier. The second one is employers' attitudes, and
I know we are not here to talk about that, but doctors are not
looking positively and seeing people with mental health problems,
like some of us sitting here today, as people who can contribute.
We may have episodes of not being very well but there is not the
encouragement from within psychiatry for people to go out there.
I had a psychiatrist say to me, "You can do your university
degree standing on your head. Why aren't you?" That is why
I went back to university. It does not exist. There is not the
encouragement for people to get out there and get a job. I think
the psychiatrists have to come out of their ivory towers and see
that we lead real lives as well.
209. Can I go back to the gender and race issue
again? It seems quite clear from all the evidence that there is
a marginalisation in the services. We have heard a little bit
about listening to the users, there are some good examples of
user lead initiatives and often there is difficulty in access
to funding, but what ideas do you have for greater user participation,
user lead initiatives, setting up specific black counselling projects,
and how they should be provided and where they should be funded
from?
(Mr Ferguson) I think what obviously seems to be happening
out there is that the statutory services within the Mental Health
Service actually relies quite a lot on the voluntary sector to
provide the shortfall in what they are not providing. However,
it seems strange that the voluntary sector is really dependent
on bidding for funds and getting grant money. I believe that some
of the statutory services should fund some of the voluntary sectors
to the point where, if you like, some of the expertise of what
you lack within the statutory services you can actually get from
the voluntary sector, ie, users who have got the experience of
actually working on a day-to-day basis with patients. Their imput
is only one of tokenism I think. You can actually draw a lot of
experience and employ people within the voluntary sector more
on a permanent basis, rather than just using the funding regime,
because you have a lot of good projects working within the black
community and other communities. If they lose their funding, we
are back to square one and then our service provision will not
be provided for. The fact that it is being provided for largely
by the voluntary sector would suggest that the black community
is getting a raw deal anyway. I think the Government needs to
think of a way, just like you did within the housing sector where
you created housing associations. They largely started out as
a voluntary type of service provider and they were given money.
First they had to bid for grants, but then they were actually
given certain grants automatically by the housing corporation.
I do not see why the same thing cannot be done within the voluntary
sector, because obviously it is a service that is acknowledged
that is needed, but why should they have to bid for funds? Why
should certain workers only be in a post for three years, even
when their work is valued? It seems that sometimes you are creating
a rod for your own back. In one sense you are saying the Government
wants to get more people suffering from mental illness into work,
but really it is like you are saying it from a point of view whereby
this is what the Government wants rather than giving people who
suffer from mental health all the assistance they need or require
that would enable them, by their own means, to go back into work.
It is the approach that really matters here. Like the saying goes,
"You can lead a mule to water, but you can't make them drink
it." People suffering from mental illness need to have a
sense of empowerment, a sense of self-worth. If you do not give
them that, how can you even think that they will have the confidence
to get them back into any sort of meaningful work. People feel
as if they are forced to go into something because the Government
is telling them this is what they must do, and I do not think
you are going to get a good response personally.
Chairman
210. Can I just explore one or two gender issues?
I think, Mrs Abbott-Buttler, your organisation has looked at the
gender issue as well. I am interested in the male issues on gender
as well as the female issues on gender and one of the areas that
has interested me over the years is the way in which some men
with mental health problems are more likely to end up in the criminal
system than, perhaps, women with similar problems. Would you accept
that as a fair point, looking at it from your point of view?
(Mrs Abbott-Buttler) Yes, I think it is a fair assessment
of these points.
211. What should we do about it? It is particularly
relevant to young black men, presumably?
(Mrs Abbott-Buttler) Yes. Like my colleague, Mr Ferguson,
mentioned, in terms of the sex law for us there is an element
of that already happening through the medium of sectioning. Many
young black men—of course, I can only speak from my own
experience—because of different social factors, lack access
to appropriate employment, many of them have been failed within
the education system, lack of housing, lack of rights, access
to different opportunities, and so all of those social factors
contribute to mental distress. If you become mentally distressed,
ie, simple depression, and you do not get the support or the encouragement
to overcome that, you find yourself filtered through to the criminal
justice system which in turn then syphons you off to the secure
hospitals such as Broadmoor, Rampton, Ashford and other places
like that. What is running straight through, for me, is institutional
racism. For some people it is not comfortable to hear it, but
it is a fact, the McPherson Report actually highlights that in
terms of the criminal justice system, but there are parallels
to be drawn from the mental health system as well. The Orville
Blackwood Campaign Group—I have known Orville personally—here
was a young man being his own self advocate who was literally
held down, injected and died. An inquiry was carried out. What
happened to the recommendations that were made? Left on the shelf.
So I put your question to me back to you to say the Government
has the answers in terms of policy implementation and I think
basically what the black community is asking for is mutual respect,
understanding of their cultural needs and cultural backgrounds,
and finally to understand that they too need to be treated fairly
and equally within the mental health system in terms of psychiatrists
providing appropriate assessment, appropriate diagnosis and appropriate
treatment. That is all we ask for, nothing less, nothing more.
212. Can I come back to Mr Ferguson? Can I put
to you a slightly different question and it might link into what
we have just been discussing? You used the term "tokenism
of user involvement" and I would be very interested to know
how you see users getting in the driving seat? One of the problems
that we have had in framing how we are heading this inquiry is
how do we genuinely get to user opinion and how would we achieve
some sort of user involvement in the political process that drives
forward some very important policy decisions in the near future
on some of the issues that we have been talking about today?
(Mr Ferguson) I think one of the main ways that you
are going to get more user involvement is to basically have more
black people present at events such as this, because I personally
feel in a degree of isolation by the very make-up of this Committee.
213. We have a Yorkshire man over there.
(Mr Ferguson) That goes some way to solving it. If
I can just raise a few points which might help to understand the
bigger picture? Black kids, from when they start school have a
higher probability of being excluded and thereby being effectively
denied an education from a very young age. You are then seen to
be out on the street; you probably go in and out of different
special schools, you probably end up leaving school with little
or no qualifications at all, you get stigmatised by the local
police, at some point your family might be aware that you are
having some sort of problem, but as of yet there is no provision
for young black men to actually be treated for symptoms that might
be showing or surfacing to do with mental health. So then when
the problems become that far gone, like Pauline says, you tend
to find that young black men tend to get criminalised a lot more
easily if they do suffer from mental health because there is nothing
there for them. That is linked again to the lack of housing provisions.
There are more black people within the inner cities living in
bad housing conditions that are faced with continuous racism from
the day they go to school until they reach adulthood. Then you
start coming up against the heavy hand of the system, whereby
you are institutionalised from a very young age and denied basic
rights. That is enough to drive any man mad, to the point where
society creates the problems of the black man, then where life
overwhelms the black man and pressures overwhelm him and it ends
up in a state of mental breakdown. Society's answer is to then
take that man and pump him so full of drugs that he does not know
who he is or what he is. You then actually find that most black
guys end up being in a worse situation than they were at the beginning.
Society needs to break the chains of oppression that are put on
black people, especially young black men, because it seems like
there is a culture. What you mentioned before about women seeming
not to go through the same level of pressures as black men is
because I do not think society at large sees women as the same
threat as a black man.
214. I think there are a lot of parallels. We
talked earlier on about moral defectives in the old system. It
was not that long ago that we were locking up women and institutionalising
them for being moral defectives. I have read a lot of Phyllis
Chesler's writing about women and madness which looked at the
way in which there is a tradition of defining them as mad in middle
age, and the argument is that at that stage chemical changes are
taking place in a woman's body. There is no actual perception
of what else is happening in the social circle, their family has
grown up and their key role in life has been lost. That is where
I see parallels with what you are talking about.
(Ms Campbell) You asked about how users could get
involved and how you could involve them in the political process.
The key words here are "political process" and you are
very much talking about disempowerment there. The thing is that
all of us around this table, over the last ten years or so, have
had experience of being involved as users, and it depends how
you define it. I think we have reached a stage, as people who
use mental health services, of thinking you ask us to come to
meetings and listen to what we say, but very, very rarely—I
can count it on two fingers—does what we say make a difference.
I was part of the National Service Framework, I was in the Users
and Carers Outcome Sub-group with three professors of psychiatry
and a colleague from another charity, and we were talking about
user and carer led outcome measures. Needless to say, none of
the work that we did got into the National Service Framework.
A lot of users will say, "We have been there, done that and
it made no difference." What we are asking for is support
to organise our own constituency and our own infrastructure on
a local level at grass roots. If you can support and help user
groups develop, then you will get users saying, "Perhaps
we can work things out, manage a budget, set up something, and
develop services for ourselves", but you have to start from
the bottom up, you cannot start from the top down and say, "Well,
we will listen to what you say, but it is not going to make any
difference that we will particularly notice and we have not got
any power, but thanks for trying."
(Mr Russell) I really do feel it is about time we
had service users involved in the decision making processes right
the way through. It still troubles me about how many service users
there are appointed as non-executive directors of trust boards,
for example. It troubles me that we have NICE with no representation
from front line service users, we have a Commission for Health
Improvement with no representation from front line service users,
and until we start actively involving service users in the decision
making processes in a meaningful way, we are never going to get
further forward, because, as Karen says, over the last 10 to 15
years we have been involved in these things and it is all very
nice, but you cannot help but get the feeling that decisions are
made before you sit down there anyway.
Mr Hesford
215. In terms of getting a grip of the system,
one of the things that has so far been resisted by the Government
in terms of the Green Paper is the statutory right to advocacy.
I would be interested to see whether or not our witnesses think
that would be a step forward, enshrined in any new Act?
(Ms Campbell) I think that is the one mechanism that
might help keep users half engaging with the system, if they feel
that they have somebody there, they have a legal right, they have
somebody who will be there for them to speak for them and help
them through the system as a right. We are talking about checks
and balances here and without that statutory right to an advocate—and
I would argue for peer advocacy—there is a big job to do
out there of giving resources to peer advocacy groups, so somebody
is with you who has come out the other end and they know their
stuff and they have had training and proper legal training. It
is just about the one safeguard that might make it work. Otherwise
you are going to have a collapse of people engaging with the system
because they fear so much that there is nothing there that is
going to protect them and their right. There is not a right to
treatment. There is a kind of forced right to receive treatment
when you do not want it or when you are too far to know that you
need it, but there is no right to access treatment when you need
it. So something like the right to advocacyMs Campbell)
We all agree.
(Mrs Abbott-Buttler) It is a proposal that I, on behalf
of Footprints and it members, would very much welcome. We think
this would be a very good safeguard in terms of individual service
users and ensuring that their rights are respected.
217. I have got one quick final question. Do
any of my colleagues have anything further? I am conscious that
we have kept you a long time. What I want to end with is a question
to really bring out what you feel to be the one most important
thing that could make the radical change for the better in mental
health services. Is there one thing that you can identify?
(Miss Schram) I think I would relate to the need for
better community care. I would say the one thing I would like
to see improved is in-patient care, because for the foreseeable
future there is always going to be in-patient care of some sort
and the level of most of it at the moment is not fit to send your
dog to.
(Mr Russell) I hate to go down the easy route and
say that we need more resources, but the fact of the matter is
that we do need more resources. If we can break down the barriers
that we spoke about earlier so that people can work together effectively,
then I think we might move forward. I do think the National Service
Framework does provide us with a positive opportunity to go down
that route.
(Mrs Abbott-Buttler) What I want to get across is
that the emphasis should not be on control but on care, and there
has to be a balance.
(Mr Ferguson) I personally would like to see a more
effective voice from within the black community and actually being
given a say in how we receive services and the type of services
we receive, and basically for both parties, being employed or
being unemployed, to actually try to help to deliver some of these
services.
(Ms Campbell) If I had to say one thing above all
that has not been said it is a change in the balance of power
in the sense that users, patients or whatever, have a legal right
to an advocate and an advanced directive that has legal force,
so you can say, "When I'm ill, my treatment is this, that
and the other. It has worked before and it is going to work again
in the future. This is my kind of living will." That will
just about balance up the power and make this system work.
Chairman: I would just like to say that you
have all been excellent witnesses and we have had an invaluable
session. If there are any areas that you feel, after you have
given it some thought, about what we have discussed that you want
to come back to us with written evidence, we will be very happy
to hear from you. Thank you all for your valuable assistance.
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