Comment

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 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, 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 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.

Add your comments
What do you think? Email your comments on the above
article to the editor using the form below. Selected comments will be displayed.

© 2001-7  Psychminded Limited. All rights reserved