In
HUG one of our main activities is mental health awareness training
where we talk about our experiences in the hope that dialogue and
openness and honesty will change minds and make subjects that are
shrouded in pain, understandable. We make an effort at every session
to make it clear that we talk from our own perspectives and that although
we are training others this does not mean that we are a store of ready
answers.
I
hope that you will accept that from me today. I am a user and my job
is all about helping other users to speak out but I do not have key
answers or a clear knowledge of the best ways of doing things I am
just speaking from my perspective and my experience.
Over
the weekend I have been thinking of the subject of user involvement
and I have found myself drawn further back to when I first got involved
in trying to influence services and I think it is there that I will
start because in the murky past of 17 years ago user involvement was
a very new idea.
User
involvement is the wrong word and almost the wrong idea and in its
use we may see the clash of cultures and ideas and expectations that
make it such a hard thing to engage in.
My
job is, in its day to day running, all about user involvement, however
that is only as a small step on a means to an end, a way of improving
our lives and the lives of others like us that we feel we could lead
if we could only be given a chance.
As
I said I am a user of mental health services; I was originally diagnosed
as having a personality disorder and then later on as being schizophrenic
with the occasional touch of depression and anxiety thrown in to liven
things up.
I
was about twenty or twenty-one when I first became ill. In those days
life was an isolated monotonous blur, a place where the days were
grey and had no meaning, a place where my room became a prison and
the chair I sat in evening after evening a cage from which I could
not move.
In
those days where I lost belief in myself and my world I found that
the only way in which I could express myself was through cutting myself
with razor blades. The evening would come and I would drink too much
and gradually the newspaper on the floor below me would become splattered
with droplets of my blood. I would go to bed and I would pray that
I could have the courage to kill myself and I would wake up and the
day would stretch and stretch ahead. Almost inevitably I took an overdose
and almost inevitably various doctors tried unsuccessfully to help
me.
In
those months I thought nothing would ever get better, nothing would
ever change, but it did. Life was still awful, my razor blades still
my friends but I began to meet people and in the dawning's of confidence
thought, as many people do, that I wanted to give something back.
Getting
involved in planning or in services never even thought of entering
my mind, but using what I had been through and helping people in similar
situations did.
I
had been through and was still going through something horrible something
that was hard to talk about, I had lost confidence, I had lost belief
in myself and was in a world a long long way from the university course
I was meant to be on. I needed to feel needed, to feel amongst my
own, those who would understand and not need the constant display
of the mask of coping.
I
became a volunteer with an organisation called "Half Way House".
It was great, a revelation to have something to do, to find something
to believe in to be around people that I respected and liked.
As
we all mixed together, both users, volunteers and workers, we began
to give voice to those things that had happened to us. We began to
build up a picture of what we believed in. I brought up my experience
of the hospital that I had been in, with its decay, its smashed furniture
and windows, with its lost people and its alienated staff. I brought
in the doctor who banged the table promising me I would get better
and then later said I would just have to get used to a life of continual
unhappiness.
The
psychiatrist who sat in inexplicable silence through the interminable
meetings he had with me where my hope rose and soared for hopes of
solutions and then dragged low in the aftermath when I trailed home
wondering why he didn't speak to me.
I
brought the old man in the hospital who had no belt to hold his trousers
up and who died without dignity, I brought the friend who was discharged
to the floorboards and rubbish of a nightshelter from which he was
later thrown out. I brought my friends who were going to beat me up
if I could not explain why I felt as I did.
We
all bought our alienation from those who were meant to help us and
as we as volunteers and users began to meet together, we began to
construct our vision of what we wanted. We wanted to set up our own
service. Somewhere for young people, somewhere no professional would
be allowed, somewhere clean and warm and homely with lots to do but
no one to tell you what to do and somewhere with food and beds for
those in crisis who couldn't face another night on their own.
This
was our way of getting involved. It was us sitting together, a group
of people growing an idea and a belief system. We had help from a
worker and as the meetings stretched on we became organised to the
point where we met with professionals.
We
had a presentation to give. Kay had designed the brochures and Karen
had done lots of the organising. We had all seen and written our vision
of what we wanted and we went into a room, a big hall where we gave
our ideas to a group of professionals.
That
was my first taste of involvement. I had no idea of who the people
we were talking to were. They were much older, they were smartly dressed
and they had no expression to their faces. We didn't know who they
were; their job titles were meaningless to us. All we knew was that
they were important, influential and powerful people.
This
was not a place where we could have any meetings of minds. We had
no interest in speaking to them other than to show what we were trying
to do and to get help to go ahead. However we were listened to, our
views were taken into account; we never paused to wonder why a group
of professionals whose work we totally rejected should fund us.
We
relied on Pete, our worker, to do the organising and as time went
on, in the end we learnt to compromise. We had to ditch the crisis
bit of our centre. No one would fund the adaptations to give disabled
access but we did end up with a beautiful huge user run Drop-in Centre.
What
that little example of life many years ago is meant to show is that
user involvement is not something that you do in isolation. You have
to learn of the worlds and wishes of the users who are getting involved.
You have to learn that our agendas are different, that our hopes of
the process are different and that our experiences are different for
it to work and to last.
We
need to learn to respect and to enter each other's worlds. In the
world of my twenties my world was all about making life better but
it was influenced by bitterness and anger and rejection. This was
not a bad thing. It is how many people feel at different times. I
found that my anger and frustration was channelled into something,
which was hugely productive for myself and those around me.
In
HUG, which represents people with a mental illness, we still have
different views. Many of us are still motivated by great pain and
great anger. When you are deeply distressed, to the point that you
are cutting chunks out of yourself, how do you react to the doctor
who tells you that you are wickedly manipulative and attention seeking?
You don't stop do you? You don't relax to forgiveness; bitterness
can be a hard thing to release.
In
HUG there are people with a great need to testify and to bear witness.
The things we go through need said and need recorded, even if only
to make sure that the darkness of which we speak is not left or ignored
as if it never happened.
There
are also people who wish to give. When you have lived through and
been brought back from sadness you often want to give back to those
who helped and to help those who are still there. There are those
of us who just want to communicate, not to complain but to point out
things that can be improved. There
are those among us who just like the company of each other and the
chance through discussion to find out what would make sense of our
lives.
In
HUG we have grand schemes. We believe that we as users have a unique
experience that needs to be used to make services better. We believe
that people with a mental illness are routinely discriminated against,
that the public, the media and our whole culture has a distorted image
of what mental illness is. That employment is rare and that life is
often one of isolation poverty and hopelessness.
We
believe that this is wrong. We believe that to change this we need
to speak out, to join together, to learn from each other, to persuade
to argue to cajole, reason, and to stamp our feet. And along the way
sometimes accompanying us very closely, we need to get involved with
those people who make decisions who provide services and who make
policy.
Our
philosophy is that the experience of all users are valid and important
and that the more we are listened to the less we will be marginalised
and the more in tune services will be with us.
For
people like me there is in the back of my mind the perhaps rather
arrogant idea that if only we talked enough, discussed enough and
thought enough, that if only our views were acted on, then the pain
of illness would hugely diminish.
HUG is represented at a national level on groups such as the recently
disbanded Millan Committee that reviewed the Mental Health Act, on
the Scottish Needs Assessment program, that is looking at liaison
psychiatry and psychology, and with the Scottish Health Advisory service,
with work on developing a suicide prevention framework and so on.
HUG
is represented at a Highland level sometimes, with the Chief Officers
Group when it is looking at the mental health framework, on a series
of service development groups set up by the Primary Care Trust, on
the care program approach group and on the Homelessness and Rough
Sleepers initiative and so on.
It
is also represented locally at informal and formal meetings and recently
with a series of groups that are being set up to look at the mental
health framework. It is also involved with some of the local health
care co-operatives.
We
give talks such as this. We visit other groups who want to find out
how we do what we do. We provide mental health awareness training.
We have a series of postcards and posters and we are half way through
developing a website. We have frequently talked about mental illness
with the television, press and radio and so on.
I
believe that the collective advocacy as shown by groups like HUG is
an ideal and sustainable way of creating opportunities for genuine
user involvement and I will spend the rest of my talk describing how
we set up HUG and what it does.
I
moved to the Highlands about five years ago as the Advocacy Worker
and quickly met people with a mental illness who showed an interest
in a group like HUG, somewhere to meet, pass on information and campaign
for better services. The initial interest gave me the encouragement
to visit users across the Highlands in the Drop-in centres and training
units that many of them met in.
At
these meetings we talked about mental health in much the same way
that I have just been talking, and as people began to gain confidence
in the idea of a group, we collected names and addresses. After a
few months of trips and visits we had 50 people interested in a group
and as they were beginning to say that we had been doing enough talking
and perhaps we should do something, we called our first meeting to
which 25 people came.
We
prepared for the meeting by getting a series of different models and
options for the running of the group. At our first meeting in an old
church hall we agreed:
Since
then the group has grown. It has members from most parts of the Highlands.
It has grown from a group with 8 branches to one with 13. Each group
meets every two months. There is a committee that we call our Round
Table, which is composed of 2 representatives from each HUG branch.
This acts on Highland wide issues, decides on policy; for instance
on the reports that we produce or internal issues that we need to
agree on, such as developing an ethical policy, with which we struggle,
or looking at the results of the most recent review or evaluation.
Most
of our work centres around the reports that we produce. Within the
HUG meetings we hold regular themed discussions, which each group
discusses in turn, with the results being turned into a report. This
report is approved by the HUG Round Table before being widely distributed
across and outside the highlands. The reports will then be discussed
at our round table meetings to which we invite professionals' from
the relevant agencies such as the Health Board, Social Work Department,
Primary Care Trust etc.
The
reports endeavour to give a consensus view of the issue that we are
discussing but where there is disagreement on a subject we will put
both views into the one report.
Whilst
we believe that an issue remains an issue whether it is raised by
one person or a lot of people, we are also pleased that we involve
a lot of people in the meetings. A round of HUG meetings will involve
between 50 and 100 members of HUG.
From
our point of view it is important that our reports result in change.
Sometimes the change takes a time or we don't see it, but we do know
that we have influenced decisions for instance;
Our
report on the siting of the psychiatric hospital influenced the decision
to keep it in a green field site and prompted our involvement in the
reprovisioning of the old Craig Dunain in a series of meetings over
a couple of years.
Our
report on Medication helped with the creation of a system of providing
better information about psychiatric drugs especially when people
are in hospital.
Our
report on Suicide probably helped influence the decision to create
a liaison psychiatric nurse for Raigmore Hospital.
Our
report on Crisis Services and meetings with the local health care
co op helped establish an out of hours CPN service and has helped
with the recognition across the Highlands that local accessible 7
days a week services are needed.
Our
report on Ward Rounds influenced procedures for ward rounds in other
areas of Scotland.
We
have also produced a series of newsletters reporting on current events
and issues and have had representatives from the statutory sector
visit all the local HUG groups to talk about the Framework for Mental
Health and the progress on what became our new hospital.
So
to summarise HUG:
