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Underground recovery
A docu-drama
about clinical psychologist Rufus May helping a woman diagnosed
with bipolar disorder without using drugs is to be broadcast on
Monday. Writing exclusively for psychminded, May explains
that he had to keep his work with the woman secret. Otherwise, such
is the reliance on psychotropic drugs, she would have been compulsory
detained.
April
17, 2008
.....
It
took over a year for Leo Regan to make the film, The Doctor Who
Hears Voices, about my work. I think it manages to be a documentary
about mental health that avoids the usual traps of being a freak
show.
I work with adults with mental health
problems and believe people are capable of recovering from all mental
health problems if they get the right support.
I had a psychotic episode when 18 and recovered
despite doctors diagnosing me with "schizophrenia" which
they said was a life-long condition and that I would always need
medication for.
With his camera in tow, Leo steadily
shadowed me at both work and in my independent role giving talks
and campaigning. Leo wanted
his footage to be ‘real’ and not contrived. He went
to a lot of effort to film me when I was worried and anxious as
well as when I was confident and self-assured. Once he even turned
up at my house at 3am!
The film focuses on my relationship
with Ruth [not her real name] who I decided to try and help outside
of my NHS work. Ruth was a junior doctor who was suspended from
her practice for having suicidal ideas.
Around this time she started to hear an aggressive voice telling
her to kill herself. Coincidentally, she had approached me for advice
just before she started to hear voices. She had stopped taking medication
some time before. She could not approach her doctors for help with
her voice hearing because she feared that she would lose her medical
career.
I set about supporting her non-medically.
It was important to give her lots of psychological and physical
techniques to cope with her sleep problems, her voice hearing and
her moods. I became the only person she could trust with what was
really going on.
Leo was very interested in her story
and tried to film us working together on these issues. But it was
impossible because of her need for confidentiality and secrecy.
As she put it “you cannot be a doctor and hear voices”.
So instead we began to carefully document our meetings so that we
could re-enact them with an actor.
Even documenting the work added
pressure to Ruth. For example, often after Leo had interviewed Ruth
about how she was doing, I would find that she was extremely distressed
the next day. On one occasion I banned Leo from meeting with Ruth
for over a month. At that point I felt that we would have to keep
Ruth out of the film entirely. In the end Ruth and I decided the
pain of the film making was worth the gain of telling her story.
I was working totally against the
grain of conventional wisdom. Most health professionals believe
that when someone starts to hear voices or get paranoid, both of
which Ruth was going through, you have to intervene with medication.
If you don’t, conventional thinking argues, the person’s
brain will deteriorate irreversibly. I firmly did not believe this
but, at times, supporting Ruth through her crisis as she struggled
with suicidal ideas and intense paranoia, I did question my rationale.
I wondered whether my approach was making her worse not better.
I knew if she did kill herself I could be held responsible. At the
same time I saw an intelligent, dedicated person who had been let
down by a judgmental employment system, who I believed could recover
and make a valuable contribution to society as a doctor.
Ruth had been diagnosed with bipolar
disorder and again told it was a lifelong condition. I don't agree
with such practices. I think the psychiatric diagnostic model often
alienates us from our own experiences and breeds fear and helplessness.
I suggested that it might be helpful
to not embrace a diagnostic understanding of her problems. Instead,
I gave her a different model; firstly, that she could recover a
good
life. Secondly, that her distressing experiences were not the product
of a faulty brain but meaningful communications. I believed that
all of her experiences including mood swings, critical thoughts,
paranoia and voice hearing were understandable reactions to difficult
life events. For example,
a lot of her paranoia and voice hearing reflected the way her employers
were treating her, as if she was a liability, by suspending her
and refusing to trust in her ability to be a good doctor. I was
suggesting that these so-called 'symptoms' were actually 'messengers'
about past and present
hostile environments and that it was fundamental not to blame herself
and give up.
Importantly,
Ruth needed to become confident in resisting the prejudice of her
employers by lying to them about her mental health. She could not
afford to tell them she was hearing voices. This was hard for Ruth
as she is an honest person and she felt her integrity was being
ripped apart. As we worked on deeper issues I encouraged her to
express her emotions and address buried wounds in order to be released
from demons of her past. At times she slipped deeper into paranoia
and it was on these occasions that both of us had our faith tested
in my approach.
The film charts Ruth’s journey
though these experiences and also gives us some insight into the
more conventional psychiatric approach. Psychiatrist Trevor Turner,
former vice chair of the Royal College of Psychiatry, outlines the
importance of giving people in Ruth’s situation medication
whether they want it or not because “miracles do occur”.
If they don’t want to take medication most psychiatrists and
nurses will choose to force people to take medication against their
will. In the film Trevor gives a reassuring description of how nurses
are trained to forcibly inject patients with medication “in
the most comfortable and supportive way”.
I hope the film triggers a debate
not just about the rights of health professionals to hear voices
but also about the rights of people in crisis to a force-free
mental health service. Every week thousands of people are coerced
into taking medication that they don’t want and this frequently
does more harm than good.
Without giving away the outcome
of the film, Ruth and I attempted to work on her recovery in a force-free
way that honoured her right to have a drug-free approach. We had
to do this in an underground way. This is surely wrong. It is surely
wrong that many psychiatrists do not see their patient’s ‘mad’
experiences as meaningful.
It is surely wrong that they do
not promote optimism and a belief in recovery. It is surely wrong
that psychotropic drugs that impair functioning are seen as the
first port of call and that patients have little choice over what
goes in their bodies. It is surely wrong that many people who stop
taking their medication feel they have to lie about this to their
psychiatrists. We are supposed to live in a democracy but if you
are being treated for a mental health problem in our society you
are very often living in a totalitarian regime.
The
‘real Ruth’ bravely decided to speak out about these
kind of injustices by agreeing to have her story documented, hopefully
the number of people speaking out about our society’s approach
to mental health will continue to grow.
*
Rufus May is a clinical psychologist with Bradford District Care
Trust's assertive outreach team, and honorary research fellow with
the Centre
For Community Citizenship And Mental Health at the University
of Bradford. Rufusmay.com
* The
Doctor Who Hears Voices is on Monday, April 21 on Channel 4
at 10pm
See also:
Jan
16, 2008: Schizophrenia psychologist launches 'coming off' psychiatric
drugs website - Rufus May fears medication withdrawal effects
are confused with illness symptoms
Big
issues: Psychiatric
medication + Service
provision
.....
Stigma-buster
From:
Karen Walsh, theatre steward and carer, UK
Date:
April 18, 2008
Thousands of voice-hearing community members have been erased by
silence in the UK.
For the sake of those affected and their families please keep up
the publicity. This will help diminish the stigma.
Every little helps, and as a mum with a son who has suffered for
15 years it's like a breath of fresh air to know there's a programme
coming up for us. He is only 31 years old. He says he'll watch it.
I hope he does.
.....
A humane
view
From:
Afroza Ali, peer support worker and hearing voices co-facilitator,
Beside mental health charity,
Tower Hamlets, London
Date:
April 18, 2008
Working
with people who hear voices I have come to understand things that
are usually ignored by traditional psychiatry.
I
hope this documentary encourages other mental health care professionals
to look at the experience of hearing voices from a humane perspective
.....
I was chemically
lobotomised
From:
Mary Maddock, writer,
Ireland
Date:
April 20, 2008
Thank you, Rufus, for acting with the courage of your convictions
in this very difficult situation.
All
of us can have severe emotional upset when life problems become
too difficult. But is this not normal? It is then emotional support
is most essential.
Medical
'treatments' such as psychotropic drugs and electro shock can cause
brain damage.
Since
there is no evidence that chemical imbalances in the brain can cause
psycho/social difficulties then it does not make sense to uses drugs
or electro shock as a solution.
I
am looking forward to watching this programme and hope that it will
help many people to escape the chemical lobotomy I received for
almost 20 years.
.....
Ground-breaking
From: Lydia
Walsh-Yildirim, teacher
Date:
April 21, 2008
Tragically, psychiatric labels tend not to peel off so easily. I
too was labeled by the psychiatric "system", and have
laughed in the face of that label!
I hope and believe many people will find solace in this ground-breaking
documentary. Thank you Rufus, much of this wonderful work is vitally
needed in our cause.
.....
My mother-in-law
hears voices
From:
Carol Begbie
Date:
April 21, 2008
We are currently as a family going through a difficult situation
with my mother-in-law who is 81 years of age and in perfect health
apart from being an insulin dependent diabetic and on tablets for
thyroid problems.
Around
one month ago she started to experience hearing voices and basically
she is convinced they come from the man who lives next door.
She
was admitted to hospital and they have been treating her with anti-psychotic
drugs but if anything she is getting worse not better as she was
convinced the man next door followed her to hospital and was in
the ward downstairs.
She
believes he has a machine that he uses to shout to her and she tells
us he is going to kill her and watches her in the shower and says
horrible things to her. She also says he is going to kill the family.
Since then she has thought various things about family members including
them being arrested for shouting outside the hospital or not being
let into the ho spital which distress her. She even thought one
of her daughters had drowned.
The
hospital have discharged her today saying they can do no more and
that they will treat her at home. She was in a normal hospital and
have said that if she does not improve they will then likely have
to admit her to a psychiatric unit.
It
is a terrible thing to witness as she feels everyone thinks she
is mad and says she is not mad and cannot understand why we cannot
hear the voices. So it has got to the stage where the family are
saying anything to keep her happy which I don't think helps. But
any suggestions would be appreciated. She is absolutely perfect
in any other way as she knows who everyone is and can tell you all
her grandchildrens names and birthdays.
......
What if Ruth
had tried suicide?
From:
Christine Childs, teacher, University Brisbane, Australia
Date:
May 7, 2009
I wonder when this film will be shown in Australia where I am from.
I cried when I read all this because I have had a similar experience
in this country.
My
experience was in dealing with my son who suffered two very violent
psychotic episodes which both lasted more than six months and left
the rest of the family in shock and disarray.
I
had always been part of a philosophy which disagreed with the psychiatric
model and was never given any consideration when I asked the psychiatrists
in the hospital not to drug my son.
He
got over his first episode by secretly not taking the forced medication
but two years later he had a relapse and after the earlier experience
at the psychiatric hospital we did not seek psychiatric help again.
But he was very bad, hearing voices and ranting around the house
at all hours. After six months of this he eventually, to my shock,
took a rope and hung himself but didn't die - only broke his neck
and jaw and damaged his body enormously. It was a shocking experience
for all concerned.
It
may not be the worst of the experience but it was terrible to have
made the choice to keep him away from psychiatrists and then have
him violently attempt suicide like that. Just like the author of
this story I was held responsible by the doctors in the hospital
for not seeking psychiatric help and if he had died I would have
been held responsible for his death. This has caused a lot of conflict
within myself as it has caused me to question my beliefs just as
the author in this story mentions.
It's
not good to feel that because of your beliefs that you did not prevent
a person from seeking medical "help" which could have
prevented this sad incident from occurring. I cannot forget the
look of blame and disgust in the eyes and manner of the doctor in
the intensive care ward at the hospital where he was admitted with
massive injuries.
It
leaves me in a battered position. My only solution since has been
really to block it all out as I am not able to make any sense of
the whole situation and I have been upset at the wall of opposition
to me from everywhere. I have been batttered into total apathy and
because of so much opposition and the horror of what did happen
and what could have happened I have lost faith in my own beliefs.This
has caused some sad consequences.
I
wonder what would have happened to Rufus if Ruth had made a suicide
attempt as happened to me in very similar circumstances. Mostly
I wonder how he would have justified his actions. Would he have
felt guilt and regret?
It
would be helpful to me perhaps if I could get in touch
with him and ask him these questions. There is no help and suport
in my area for people who want to help a person in this kind of
mental trouble without drugs. What does one do?
.......
Diet can be fundamental
From:
Kaarina Elisabeth, freelance journalist, London
Date: July 17, 2009
For the lady Carol Begbie. I am convinced there are many different
reasons for hearing voices, but these reasons all seem to be disregarded
by psychiatrists, who treat all psychosis in the same way. ie with
anti-psychotics.
Your
mother has thyroid problems. My grandmother also developed schizophrenia
after having her thyroid removed. My mother developed it too after
having a hysterectomy. Another person I know had an abortion and
developed schizophrenia.
Some women develop psychosis as part of post-natal depression. In
all cases, there has been a hormonal basis. So why on earth then
are they treating psychosis purely as a neurological problem?
Another lady I know is convinced there is a blood sugar link as
well (your mother has diabetes), and that sorting out the blood
sugar can cure some people's voices. Certainly a friend of mine
always relapses when she goes on a diet. Yet in hospital she is
allowed to skip all her meals, and the psychosis gets out of control.
The medical staff say diet is irrelevant, though I have observed
it to be fundamental. The way healthcare professionals disregard
all of these other factors is quite unbelievable.
Insomnia too, recent research indicates, causes psychosis. Yet psychiatrists
insist that insomnia is a symptom not a cause.
Western medicine needs to stop thinking in purely medical terms
and looks at the body holistically if we are to make progress.
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