Hello,
As has been said
I am Graham Morgan. I work for Highland Community Care Forum as the
Advocacy Development Worker.
This really means
that I work with HUG, the Highland Users Group, a group of people
who have experienced mental illness and are speaking out to improve
life for themselves and other people in a similar situation. I also
work with a network of People first groups across the highlands, which
does the same thing as HUG, but in this case they represent people
with a learning disability. The
last part of what I do, is work with the "Advocacy in Action"
group, which has recently produced a Framework for the Development
of Advocacy in the Highlands.
I am a user myself.
I was originally diagnosed as having a personality disorder and for
the last 9 years have been diagnosed as having schizophrenia. It is
from this perspective that I am going to talk. I don't claim to have
answers to good practise or even to necessarily know what good practise
is, but I do know what I have been through in my personal life and
in my work with HUG and I will talk about that.
A member of HUG
who has a particularly good way of expressing himself once told me
the following:
"HUG is the
Flint inside me that lights the spark that burns in my heart."
When you go away
that is what I would like you to remember. The phrase "good practise
in user involvement" is such a flat nondescript one; it doesn't
give meaning to the passion and energy that we put into groups like
HUG. I would like to spend a little time here talking about my reasons
for getting involved.
As I was preparing
for this talk I began to think of the friends that I have. Most of
them have experienced mental illness, some have attempted suicide,
some of them have succeeded and killed themselves, some of them still
regularly self harm, some of them still wish that they could die and
it brings it home to me.
I remember many
years ago when I also wanted to die; the days when you woke up to
nothing; when you slept through the day with an empty body and a pale
mind; when the glimmer at the end was the knowledge that you may express
some measure of how you felt in the evening with blood and razor blades
and how, that eventually was not enough, how eventually self harm
turned into an overdose; a desperate attempt to escape from the agony
of what was meant to be a beautiful world.
In those days
I became involved in what we called the "user movement",
just as members of HUG do nowadays, and in the coming together we
didn't set out to get involved in the health service or the community
care sector, we came together for lots of reasons.
For me the reasons
for getting involved were a mixture of the following:
I wanted retribution
and restitution and I still do. Seventeen years ago I woke out of
a comfortable existence when I came into contact with the psychiatric
services. Today we talk about the old Victorian Hospitals and the
ways in which people were cared for as if they were the past, as if
dusting off the memories was a slightly shameful thing to do
- I will never
forget a nineteen year old screaming for what seemed like hours after
he was jumped on and injected by a huge army of nurses,
- or the man ,who later died, who had to hold his trousers up with
his hands ,
- the crowded dormitory which was so hard to sleep in,
- the silly codes in the nursing records,
- the long stay patients scrabbling desperately in the ashtrays for
cigarette ends before being sent back upstairs,
- the smashed windows ,the holes in the walls
- The patient who hadn't seen the town for over twenty years and was
wondering what it looked like.
- I won't forget the bare boards of a night shelter where in a scene
out of some corny film a young man rocked on the floor amid rubbish
and bin liners- holding a teddy bear to his chest for comfort.
I want these crimes
against a part of our society to be recognised and for someone somewhere
to make amends. User involvement nowadays is not about commenting
on a community care plan it is about opening our eyes wide and asking
ourselves "What is it about the way that we are treated nowadays
that will go down to be repeated by future generations as- inhuman,
as wrong -as basic issues that those who follow us will puzzle over-looking
at our lack of action and our lack of interest"?
In HUG our discussions,
though focused, range far and wide, and I wonder what is it that we
have seen that is so wrong? Do we even as users know it in our thoughts?
Is it the fact
that so many of our members have spent years on benefits with no realistic
chance of coming off of them? On benefits, where you feel surrounded
by a maze of forms and regulations that are so complicated, that it
is recommended that you get outside help to fill in some of the forms;
on benefits where in your despair and because of all that it signifies,
you leave and put off for day after day and week after week making
your claim.
Perhaps it is
that, maybe the issues are housing, some of us live in appalling accommodation,
and some of us have nowhere to live at all. Perhaps it is the fact
that some of us can be treated against our will when we have committed
no wrong and no crime except to refuse to recognise our illness.
One thing I am
hoping future generations will look back on with dismay is the fact
that so many people with a mental illness are in prison and that in
rural places such as the Highlands the police cells can be the only
option before being admitted to hospital.
This is where
groups like HUG come into their own. Last year we alerted the Scottish
Health Advisory Service to this situation, when they came to visit
the highlands and they in turn alerted the Trust who along with the
Health Board, Social Work Department and a member of HUG, successfully
applied for funding to develop Places of Safety as an alternative
to the police cells. As the circle turns we in HUG are now finalising
our own ideas about what this should really mean in the areas that
we live.
But it is slow,
in HUG it is easy to think we have shown the problem, made the argument,
done the talking so surely now something should happen. That is how
things change isn't it? By rational reasoned discussion, by getting
everyone together by listening to each other, and yet it isn't. A
year after raising the problem of the use of police cells for people
with a mental illness they are still being used.
During one of
our discussions on this very subject a few weeks ago, we were made
aware that someone had just passed his twentieth hour in the police
station awaiting transfer to the hospital.
That is where
we can all get so frustrated. Identifying the need, for instance for
crisis services. The pure basic cry of this is what it is like in
crisis; when in the depths of the night your soul yearns for some
sort of solace, some contact to take away the pain of your thoughts
and to ease the fear of what seems to be the approaching collapse
of the world you try so hard to live in.
We have made the
argument for solutions to this; for helplines; for access to services
and people you know and trust out of hours and we have won this argument.
It is clearly in the Highland Mental Health Framework document and
in each area of the Highlands they have been holding workshops to
look at solutions. At last we are getting there and should be celebrating.
But we do not
always celebrate because user involvement is not always about meetings
and discussions. It is about identifying the raw uncovered pain of
your world and the world of your friends and when you go into a meeting
to talk about the need for help that will come immediately at any
time of the day, and you meet a crowd of well dressed confident people,
who although they believe in the need for services, who, although
they are committed and will go out of their way for better services,
when you meet them and you realise that this day is also a good break
from work and a chance to catch up on gossip and friends, then worlds
and cultures collide.
Because it is
not acceptable when people give their time to look for changes that
may save their own lives or their friends lives, for us to go into
workshops where the spectre of limited resources, where the cynicism
of we have said this all before deadens the impact of what is so important
to all of us.
In those circumstances
we can go away downhearted. We can say why do we ever speak out? Why
did we bother getting involved in the first place?
The workers who
we are angry with in turn may feel incomprehension, they may say but
why are you angry? Why do you blame me? I am surely on your side and
they are but we are miles apart too.
As I said user
involvement is many things. The involvement is just the vehicle for
what we are doing. For me and many others in HUG we get together to
change the world, literally to change the world. I am sure that many
of you will understand this.
When you have
been through a pain that no one else sees, an emptiness you cannot
express and fears and delusions and hallucinations that mean that
the only form of expression, the only way to express what you feel
is to literally torture yourself; in my case by stubbing out cigarette
ends on my hands.
When you have
been through this you need to make sense, you need to understand,
and you need to stop feeling guilty. You need to look at a world where
even in relative luxury so many of us can feel so sad.
In HUG we tentatively try to do this, by talking, by discussing and
by testing out our ideas we try to make sense of our lives. We try
to find meaning to what we have done, we try to make other people
understand our lives and in this understanding come to see how ordinary
and normal we really are. We try to make sure that no one else goes
through what we have gone through.
HUG is about coming to terms with who we are and how we see each other.
Learning to believe against the odds of an uninterested society, that
we really do have things to give that we really are valuable, that
we are not the second class citizens that so many members of HUG have
been made to feel they are.
I have obliquely
been talking about the things that make a group like HUG work and
some of the barriers that we face and I would like to summarise some
of the things that we do, before finishing with a couple of examples
of the things that have really struck me.
Groups like HUG
look to the past, sometimes the very recent past, where we give witness
and bear testimony to what has happened to us. Both to give expression
to illnesses and experiences that need recorded so that we can grow
beyond them and also so that other people can understand and challenge
their own prejudices. But to also to make sure that the abuses and
betrayals that still occur do not go unrecorded.
I want it known that there are still doctors who struggle to believe
in mental illness, that there are still GP's who have commented on
the actions of young people falling slowly into psychosis as the behaviour
of spoilt children, and that all that is needed is a firm hand and
discipline, that there are professionals who have said of the suicidal
despair of people, that this is just an example of evil manipulation
of services and people.
It is easy to
gather the examples; it is vital that they go recorded. In HUG we
can also look to the future. We can look at the fresh present, we
can identify the problem, whether it is a practical one such as people
living in sub standard accommodation or having stones thrown at the
place in which they live. And seeing the problem we can look to the
solution and do our best with the drip feed of argument and dialogue
to ensure that what has hurt us does not hurt those that come after
us.
That description
comes from the passion of people like me for whom this can be all
consuming. HUG is more than that. It is also about keeping in touch
with the grass routes by meeting with people where they are so that
they can contribute in their own way without the burden of having
to get over-involved.
HUG is about celebration.
Our lives are hard but it is good to find ways to contribute and to
find ways of giving back because not everything is about abuse and
sadness. Many of us, myself included have had brilliant treatment
from other people and we need to record this too.
HUG is also about
doing things directly. I have not talked about a huge part of our
work which is that concerned with changing the attitudes of the public
and professionals by using our own testimony in the media and in mental
health awareness training.
This is because
Emma my colleague will be doing a workshop on some of this later but
in brief:
We have provided
mental health awareness training to a large range of people including:
The police, GPs, Mental Health Officers, Care Managers, Care Assistants,
Nurses, The Joint Committee on Community Care, Housing Workers, Woman's
Aid, Schools and so on.
We have been involved
in media work with television, the national and local press, and on
national and local radio. We have given talks such as this all over
the place including a talk to members of the Scottish Parliament and
produced a range of postcards to promote discussion of mental health,
60, 000 of which have been distributed.
That sort of work
is great, it is real, it is tangible and it has a clear and sometimes
immediate effect. That is a form of user involvement which, although
it takes a lot to get involved in, feels to me to be really worthwhile.
In short presentations and dialogues you can make lives real, you
can change minds and you can bring understanding to people who through
ignorance have damaged us.
To finish, just
a few things that have struck me recently which are really to do with
communication and needless barriers.
Not long ago I
gave a talk to a group of psychiatrists on the things that had worked
for me and the things that did not. I had heard a lot from members
of HUG about these people. Some of it good some of it bad and I had
also had a mixture of experiences myself.
But in my mind
they were wrapped round with my own labels and categorisation they
were the minds we had to change, they were the suits and they were
possibly the barriers to our future happiness.
And yet they weren't,
the barriers weren't there. I had one of the best evenings of recent
years where we communicated, where we listened to each other, where
I began to see them away from their image and where perhaps they began
to se me away from my image.
It seems to me
that it is the preconceptions, the worries and the labels that get
in the way and yet when we see each other just as people, then we
can speak to each other constructively.
Another memory
was doing training with GPs on self-harm, a bruising emotional encounter
tempered with respect and care. The bit that struck me is that we
gave our views our feelings and then we asked the GP's and registrars
to do the same and we saw the wounds and incomprehension that they
faced when dealing with us and with this my eyes opened a little further.
When we wrote
our report on Quality we said that the key to a quality services is
the staff, and the best experiences we have had is with staff who
we know are there for us and those who go that little bit extra and
show us that they really believe in us.
Some time ago
I was doing training with a voluntary organisation that works in mental
health and met one of the people involved in planning now as a volunteer
and again the scales fell away because yet again I hadn't expected
a commitment beyond doing a job professionally.
Although we need
our separate voices we also need to remember that many of us, perhaps
most of us, are in this together.
Lastly When I
first mentioned to one of the members of HUG that I was doing this
talk she said to me that one of the clearest examples of bad practice
is when people sit back and think they've got it sorted. I think I
would agree with her.
I don't in my
heart know what good practice is but I do know that constant inquiry
and reflection on your own practice puts you on the road to doing
as well as you can with the people that you work with.
Thank you
