Hello -
My name is Graham
Morgan and I facilitate the Highland Users Group, which represents
people with mental health problems. I myself have a diagnosis of schizophrenia.
I am going to
talk a little about what it is like to have a mental health problem,
but also about the services we use and those that we need, but do
not as yet exist.
I have a difficult
task here. I have made an assumption that many of you, through no
fault of your own, will not know much about mental illness although
statistically some of you will have direct or very close experience
of mental health problems yourself. For those of you that are well
informed, I apologise if I make this too simplistic.
I want to show
the reality of severe mental illness, but at the same time I do not
want to make you think of us as tragedies, victims, people to be scared
of, controlled or pitied. We are just ordinary people who happen to
need some help to maintain a life in the society that we are all a
part of.
I have had a mental
health problem since my early twenties, and in the last 6 years this
has developed into a serious illness that has been diagnosed as schizophrenia.
Basically this means that on occasions I enter a different reality
to the one most people would accept as "real". When I am
acutely ill a range of things happen to me, such as -
- I start
to believe that I am possessed and controlled by evil spirits.
- I start
to think that just by being in a room with people that they can become
infected by me and so I avoid contact with people.
- I begin
to think that everyone knows my thoughts, that people are staring
at me and writing things about me and that my thoughts are being altered
by the spirits that I believe control me.
- I see bright
lights that I believe are spirits.
I do bizarre things
to try to get rid of these thoughts, such as -
- I have
wanted to be electrocuted or locked up in solitary confinement.
- I have
hidden under a gap in our floorboards for a couple of weeks, convinced
that I will be safe there.
- I have
burnt strange patterns on my hands with cigarettes and re-arranged
furniture into shapes that I think will protect me.
- I have
cut my wrists with razor blades.
These experiences
are obviously very frightening for me, and those that are close to
me, and sometimes mean that I need to go into hospital for a time.
It is important to realise that, although part of me in those times
is in unreality, the rest of me is very much in this world. I still
feel and I still know what I like to eat and I still know when people
are treating me well or badly, but I do have a lot of trouble functioning
in an "ordinary" way.
I have experienced,
and for many people this is the main experience of schizophrenia,
the opposite of the acute illness, known as the negative symptoms
where the world seems to be ruled by apathy. Where life consists of
staring at a wall and smoking cigarettes and where it is hard to speak
and creativity and spontaneity become alien concepts. I have found
that aspect of the experience the most difficult to cope with, this
almost disengagement with myself.
Well that is what
mental illness has been like for me. If we left it there then maybe
you would be justified in thinking of tragedy and pity or fear, but
that is only a small part of my life. I still have symptoms - I still
regularly see my psychiatrist, my community psychiatric nurse, my
GP and should soon be seeing a psychologist.
However, during
all this time I have stayed in employment, I have remained married
and I have helped bring up my child. How do I express this? As people,
we have difficulties because of our illness but we still very much
remain human. I am in daily contact with people with severe mental
illness and want to emphasise the positive.
We remain vibrant,
we have a huge amount to give to the society we live in, we love,
we laugh, we cry and we are sad. We are mothers and fathers, brothers
and sisters and children. We talk about politics or football or philosophy.
We go for walks and into cafes and pubs and restaurants. In other
words, we remain ordinary people.
Some of us are
clever, some of us not so clever, some of us exciting and some of
us boring. The vast majority of us couldn't be picked out as mentally
ill in a crowd, and of course there are a lot of us. I believe that
it is estimated that there are 21,000 people in the Highlands with
a mental health problem.
Some people, like
me, have employment but for many of us, perhaps the majority of us,
employment is a distant prospect. Distant for some because of their
illness, but distant for many because of stigma, prejudice and discrimination.
It is inevitable
that stigma and discrimination will exist when most of the population
is ignorant of what mental illness is and spurred on by our culture
and media fearful of mental illness, but being on the receiving end
of prejudice can be a very uncomfortable experience.
Let me give a
few examples:
"These
psychos should be given the needle - they should be put down".
That was said in front of one of our members in a pub in Inverness.
The first time one of our members was admitted to Craig Dunain she
didn't tell her husband where the ambulance was going until it missed
the turning to Raigmore. She was terrified he would leave her when
he found out where she was going. For the first two weeks in Craig
Dunain she kept her coat on so that people might think of her as a
visitor, and only left the ward when groups of nurses were leaving
so that she might be mistaken for a nurse. We carry the stigma or
disgrace inside us too.
I met someone in Craig Dunain recently who was saying to me how much
he wished he could stay there indefinitely so that he would not have
to go back into the community to endure the bullying and name calling
that have become a constant feature of his life there.
Whenever I meet
new people I wonder when I will tell them that I am mentally ill and
how they will react. I don't know why I do it; it is such a central
part of me. No one has turned his or her back on me yet and yet I
am always expecting it to happen. What I do know is that there is
always a reaction to mental illness. If it is not fear and avoidance,
there is intense interest or people wonder "how do I talk to
them?"
Whatever the reaction
there is a "labelling" that occurs that incorporates many
of society's values and much of our perceptions that have grown around
the often inhumane treatment we received in the recent past. It is
only in the company of fellow users, or people that we have known
for a long time, that the exclusion drops - the "he's OK but
he's different to you and me".
I can give you
numerous examples of discrimination. In fact we are just writing one
of our reports on it. However, what I would like to say is that the
misperceptions about us have to be challenged. We have so much to
give that discrimination prevents us from giving. We lose so much
confidence when we "crack up" and the attitudes of society
hardly help us to recover that confidence.
We need the public
to know more about mental health problems. To realise that huge numbers
of people have them, and especially to realise that there is no shame
in going for help when people are having problems in coping. For that
we need to change the image of people with mental illness and the
services that help us.
I can't go into
the value of the services that other people and I use. It would take
too long, but briefly -
- I often pop in
to a drop-in centre during my lunch hour. I feel secure there, I feel
that I am amongst my own and that people will understand me and that
I can talk to them without fear of judgment.
- I see my community
psychiatric nurse to talk to about some of my deeper feelings and
to find practical ways forward in life.
- I see my psychiatrist
so that he can check that I'm OK, and to be honest, in the hope that
one day he'll say its OK for me to come off my drugs.
- Soon I'll be
seeing a psychologist to see if she can help me with some of my negative
perceptions about myself.
I feel very content
with the services around me and would begin to despair if anyone else
decided to help me. However, we are all different, we need varying
levels of input and have a right to expect a choice in services that
reflect our individuality.
As I said, I am
in employment. That is rare for someone with a mental illness. The
majority of us are on benefits. This creates a whole range of problems
for us. Having problems in coping, and also living near the poverty
line, can make life almost insupportable. How do you get better when
you see the years stretching out in bed and breakfast or hostel accommodation?
How do you regain
your motivation when much of your life is spent staring at the four
walls of your room because you cannot afford to go out to the cafe
or the pub because public transport is infrequent and, even with a
bus pass, expensive? How do you keep physically healthy when fresh
food is expensive and when it is hard to afford recreation and leisure
facilities?
I have kept moderately
healthy for the last few years, but then I have friends, I have work,
I have a car and a house and money. I can afford good food and an
occasional drink and lots of cigarettes! I can clothe myself and heat
my house. No wonder I'm healthy! Equally certain, to my mind, is the
fact that I would be going back and forward to Craig Dunain if I lived
in the sort of circumstances many of the members of HUG have to live
in through no choice or fault of their own.
I believe that
I read in a recent publication that 90% of people with a mental illness
are unemployed. That means that they are on benefits and in great
need of the services the council provides.
We need some basic
things. A simple thing is regular face-to-face contact with people,
but of a special sort. Contact with people who will listen, who will
not judge. Who will help us to find solutions to some of the problems
we confront by having to live life the way we do, who will help us
to find ways of accepting our illness, who are warm and human and
who above all treat us as equals in the process that we are going
through.
This is especially
so on the West Coast of the Highlands where the stigma of having a
mental health problem seems to be higher and where the services are
so scattered.
This contact needs
to be from professionals, but it needs to be when we need it rather
than when we can fit into someone's timetable. Our problems last 24
hours a day and emergencies are just as likely to occur after 5 o'clock
as before it. We need services that are responsive to this fact -
leaving out of hour's cover to GPs is not the answer. Some of them
are very good, but some others do not have much training in mental
health, and it appears that the service we need in an emergency can
be slightly different to the one a GP is employed to provide, and
certainly requires a lot more input in terms of time than many GP's
are prepared to give.
We need contact
with other people in similar situations, but what that contact should
be we don't know yet. We will be talking about that in the near future.
We need clear,
realistic information about almost everything. Many of us find out
about the side effects of our drugs only through experiencing them.
Many of us discover what Craig Dunain is likely only through being
admitted and many of us have only sketchy information about the illness
that we suffer from. In order to make informed decisions to enable
us to participate in our treatment we need to know what is happening
to us, and what sort of decisions are being made about us.
Mental illness
is not confined just to ourselves. Our friends and relatives are also
greatly affected by the fact that we have a mental illness and they
themselves need help in coming to terms with what has happened, with
getting support for caring for us (if they have taken on that role),
and in resolving any feelings of guilt that they may feel because
we are ill.
Before I started
this talk, I asked my wife about some of the thoughts she had about
having had to care for me on occasions. I am afraid that many of her
comments were negative and consisted of two elements.
The first is information;
no one explained to her what I was going through and how she could
help. She was completely ignorant of the psychiatric system; she had
no idea that she could ask for the assistance of a social worker and
had never heard of a CPN (Community Psychiatric Nurse).
She got very tired
looking after me, especially as she was also looking after our five
month old son at the time, and basically followed her instincts in
caring for me. The second is that she got very angry about the way
I was treated and the lack of opportunity for her, as someone who
is very close to me, to say how I would probably like to be looked
after.
For the final
part of my talk I will raise a few questions that you might like to
consider if we have any time for discussion.
One of the recurring
feelings that I get when I am ill is that I have become evil and can
infect anyone who happens to be near me. My wife has, on some occasions,
had to restrain me from going to the police and asking to be locked
away so that I don't harm other people by my presence, and I have
often thought that maybe I should have to commit some sort of crime
in order to be locked away from other people. I would like you to
consider how you would deal with me if I turned up at a police station
like that or committed a crime for that reason.
The other question
I have for you is about "appropriate" adults. I believe,
although I am very sketchy on the subject, that if I became involved
with the police there is a requirement for me to have an "appropriate"
adult present. I don't completely object to his, but I would like
to say that if that occurred in a couple of weeks time while I was
as well as I hope you perceive me to be I would be furious and would
not co-operate.
Alternatively
if the situation occurred when I was ill, when it might be valid,
I would be immediately suspicious of such a person and again reluctant
to co-operate or believe that they were there to help me.
These are just
a couple of personal comments, but I would be interested to see how
you would deal with that situation.
Thank You.
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