Paged updated 09/05/2008

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Hearing Voices from the Television:

Reflections on the making of "The Doctor Who Hears Voices"

by Rufus May

 

When Leo Regan became interested in filming my work as a psychologist he warned me I would soon sick be of him, I didn’t know what he meant. Eighteen months later I now have a clearer idea! Leo always wanted to get underneath the skin of help-giving and often it was quite exhausting for everyone involved! It took over a year for Leo Regan to make the film about my work called The Doctor who hears voices. Leo has tried to show the humanity of working in alternative ways with voice hearing. The result is a film that is both challenging and realistic in its presentation of the dilemmas of giving people real choices about how to manage an episode of intense distress.

Over a million people watched it when it was broadcast in April in the U.K. on channel 4. Thousands of people are now down loading form several Internet sites. It has provoked a strong response from viewers. Many people have been inspired by the film, others more attached to a medical approach to distress have been outraged. I think the film is unusual in that it successfully managed to be a documentary about mental health that avoided the usual traps of being a freak show. Partly because the story shows that mental health problems are understandable and meaningful and also shows my vulnerability it crosses the typical boundaries between professional and ‘patient’. A few journalists were quite uncomfortable with this blurring of boundaries. The principle that there is an expertise of experience that can be as valuable as academic or professional expertise is quite new and a bit threatening to mainstream commentators. Never mind! Hopefully they will get use to the idea.

I am a psychologist in the NHS working with adults with mental health problems. I believe people are capable of recovering from all mental health problems if they get the right support. I myself had a psychotic episode when I was eighteen and recovered despite doctors telling me I had a lifelong condition called schizophrenia and that I would always need medication. I think originally Leo was interested in how my role as a ‘wounded healer’ might affect how I tried to help people.

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. On one occasion he even turned up at my house at three in the morning! The final film focuses on my relationship with Ruth 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. After the suspension she started to hear an aggressive voice for he first time 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 definitely lose her medical career.

I set about supporting Ruth non medically. My approach is strongly influenced both by my own recovery journey, holistic health approaches and the ideas of the hearing voices movement. 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 told she had a lifelong condition called Bipolar Disorder, that her brain was fundamentally different to other people, in other words she would always be inferior to others. 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 suggested it might not be useful to see herself as having a medical condition called bipolar disorder or any other psychiatric label. 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 pateinets and forcibly inject them 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.

 

For more information see The Rufus May website

Page updated 04/10/2007


Sunday Herald, 04/10/2007



By Adam Forrest

Word is a disease in itself, patients and experts say

"I still hear voices, but I've found a way of living with them. It was only when I turned away from psychiatric medication that my life totally turned around. Since then I've got married, had kids, got a house and love going to work every day."

A growing number of mental health experts in Scotland agree that cases like Coleman's demonstrate the need to scrap the term schizophrenia, since it has, they believe, become a stigmatised and scientifically redundant category.

"It's a loaded, dated label and it can be difficult to see beyond," said Eddie McCann, senior lecturer in mental health at Napier University. "It gives the impression that it is a perpetual state, but people do get better and lead fulfilling lives.

"The label is connected to approaches dating back almost 100 years ago. We have to think about new categories based on different types of distress. Drugs have a place, but there are huge possibilities for therapeutic work."

Traditionally, advocates of the schizophrenia diagnosis argue that the illness is a deteriorating condition arising from increased activity in the brain of the neurotransmitter dopamine. Yet the success of behavioural therapies and counselling at the Scottish Hearing Voices Network in Dundee suggests that it may be traumatic experiences and other social factors that lead to the development of psychoses.

"The idea that you've got a brain disease from which you'll never recover is just not true," said Paul Hammersley, a cognitive-behavioural therapist leading the Campaign for Abolition of the Schizophrenia Label (CASL). "The claim that there is a medical condition called schizophrenia doesn't stand up to scrutiny. It's an appallingly stigmatising diagnosis. It can ruin lives."

Coleman added: "It's clear to me that hearing voices was created by my experience of abuse, not biology, not this thing we call schizophrenia, which itself disables people."

In Japan, the term schizophrenia has been replaced with the term "integration disorder", although some believe stigma would soon become attached to any new label. Instead, there is growing support for splitting the symptoms into new sub-categories including sensitivity, anxiety, trauma-related and drug-induced psychosis, since these may point toward more nuanced methods of recovery.

Andrew Moskowitz, senior lecturer at Aberdeen University's department of mental health, said: "When it was first proposed almost 100 years ago, it was called the group of schizophrenias. There's a long-standing belief in sub-groups. The challenge is in re-classifying an individual's symptoms so you can actually help them."

Yet Marjorie Wallace, chief executive of the mental health charity Sane, believes the word is still necessary to raise awareness and attract funding. "While we recognise that the term can act as a stigmatising label," she said, "without identifying this condition as a serious illness, how can there be any hope of researching it and providing better treatments?"

But Paul Hammersley is adamant that such reluctance is unhelpful. "If schizophrenia is a flawed concept, then we have to question what we're raising awareness and money for," he said.

Dr Andrew Gumley, senior lecturer in clinical psychology at Glasgow University and a consultant at Gartnavel Hospital, said the term schizophrenia told doctors and carers very little about the best modes of recovery. "Scotland has been really strong about new approaches, and there's a growing recognition that there needs to be an individualised understanding of recovery," he said.

Last updated 11/06/2007

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A cause related alternative for the harmful concept of schizophrenia

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The issues:

Outside of psychiatry it is not well known that schizophrenia has yet to be shown to be a proven disease.

There is no physical, nor psychological test for schizophrenia and in all honesty psychiatry can only say that schizophrenia is a concept, a theory that has yet to be proved.

In spite of this psychiatry acts as if schizophrenia is a proven disease and the treatments offered and most of the information available to ordinary people about schizophrenia perpetuates this fiction.

There are now well known reasons why people suffer from the complaints that are mystified by the construct of the disease Schizophrenia.

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Introduction
Over the last 30 years the idea has been formed within psychiatry that the social and emotional backgrounds of the patients are not particularly essential in the development of psychosis. Whilst they may concede that they have a role as triggers they are not regarded as being a cause.

The strange and harmful thing is that this procedure is claimed to be medically rigorous. However, this is not the way general medicine works. Here one looks for the reasons that lie behind the complaints and these reasons are essential for the diagnosis.

In clinical psychiatry a diagnosis in the area of psychosis is constructed only on the basis of the behaviour and experiences. The great problem is that the consequent treatment is also given without analysing the causes for this behaviour and therefore only the “constructs” are treated and not the problems.

This looks very much like the judicial system, which reacts to the behaviour and is far less concerned by the reasons that lie behind the behaviour. Therefore it is not strange that many patients in psychiatric services are not very happy with these procedures. They are quite right.

Whilst we accept that suffering and serious complaints are sensibly seen as an illness experience, however, this does not conclusively mean that there the cause iss a disease entity like the construct of schizophrenia. As these ‘symptom’ experiences do not result from an underlying disease, they are not really symptoms at all, and might well have another origin. Therefore the conclusion can well be that:

The people with the illness experiences exist but the disease ‘schizophrenia’, and therefore in this sense the illness, does not exist.

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The problem with schizophrenia:

Schizophrenia is not a valid concept because it completely fails scientific tests

Therefore schizophrenia is not and never has been proven to be a brain disease.

The way in which people are diagnosed as having schizophrenia gives no consideration to the underlying reasons for the symptoms that people may be experiencing.

The way in which people are diagnosed as having schizophrenia neglects the very real relationships between the core symptoms (such as voices) and the individuals past experiences in life.

The relationships between the core symptoms are neglected, for instance the persons own explanations for their voices are not considered, neither are what the voices say, or why and when they arose.

The core symptoms do not represent expressions of psychopathology.

Learning to cope with the symptoms and with the problems at the heart of these symptoms are neglected by psychiatry.

People can recover from schizophrenia and most people who do so, manage this outside of psychiatry.

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If it is not schizophrenia what is it?
There are as we know, no particular causes for schizophrenia, however we now know that that there are causes for the different core symptoms of schizophrenia in individual cases.

The diagnosis of schizophrenia is harmful because it mystifies the causes for the various behaviours and experiences of the individual, when in fact it is these very causes that need to be analysed and can become the successful focus of therapy.

What are these causes?

In our research concerning people who hear voices we found that in 77% of the people diagnosed with schizophrenia the hearing of voices was related to traumatic experiences.

These traumatic experiences varied from being sexually abused, physically abused, being extremely belittled over long periods from young age, being neglected during long periods as a youngster, being very aggressively treated in marriage, not being able to accept ones sexual identity, etc

In our experience many people start to hear voices and only afterwards developed the other experiences. These arise as a reaction to hearing the voices and because people cannot cope with their voices.

One of the clearest interrelationships that have been scientifically studied is the explanation people give for their voices. Because the voices are for the voice hearer a strange, unknown experience, the explanation they think of is also mostly strange for us and therefore easily identified as a delusion.

This means that the auditory hallucinations and delusion are interrelated and not separate symptoms of an illness. This holds for many symptoms of schizophrenia, being secondary reactions to a primary symptom like hearing voices that scares the person and with which they are not able to cope.

When we look at the concept of schizophrenia in this way we find the symptoms are not the results of an illness entity, but the illness picture is composed of primary symptoms, that are a reaction to traumatic experiences that have led to a psychological vulnerability, which includes serious difficulties in coping with emotions. When we consider hearing voices as a way of coping with this psychological vulnerability, then secondary reactions arise because of the inability to cope with this primary symptom.

Psychiatry disregards trauma as a cause
However, this process of developing psychosis has been totally abandoned in the concept of schizophrenia as used in psychiatry. This is a serious oversight, for if they seriously considered the traumatic experiences they could then perhaps understand and discuss the emotional consequences and problems that people endure. By not doing so, psychiatry is abdicating its responsibility to help people to understand the relationship between their voices and their experiences, to support them in finding other ways in coping with their voices and with their emotions involved in their traumatic experiences.

As long as we try to cure the alleged illness we are doing nothing but effectively suppressing emotions and because of this the person is being denied the opportunity to learn to cope with them and are therefore dammed to become or remain a chronically ill patient.

In this sense the psychiatric approach has become a self fulfilling prophecy.

A more helpful approach
There are a great number of epidemiological studies that show us that there are quite a lot of individuals hearing voices and delusions without any apparent sign of psychiatric illness. In fact there are more people hearing voices or experiencing delusions without illness then people with these experiences that become psychiatric patients.

For mental health professionals, this is something that has proved to be very difficult to accept. The simple reason being is that they don’t meet these people as they do not need psychiatric care. Many even say they are happy with their voices and their ideas about them because they have been helped by them in their daily lives.

This reality, that there are quite a large number of people (about 4%) in the general population who hear voices and even more (about 8%) have peculiar personal convictions, that we call delusions, without being ill, compels us to realise that the experience of hearing voices or having delusions are not in themselves a sign of mental illness. This is quite an important fact in understanding psychiatric patients with these experiences, because it opens our eyes for the reasons why the person became ill. A person hearing voices becomes ill, not because he hears voices but because he cannot cope with these voices and that again can be understood. Those who cannot cope with their voices cannot cope with them, because they cannot cope with the problems that led to the onset of the experience of hearing voices.

This double inability makes it important not to focus on an unknown Disease but: To help the person to learn to accept and cope with his voices and or delusions and with the problems that led to them.

In this way it becomes clear that the focus on schizophrenia, an illness that does not even exist can not solve the problems that lie at the roots of becoming ill.

Whilst diagnosis and treatment remain focused on the illness concept schizophrenia we will never be able to help people experiencing symptoms to solve their problems.

In order to really help people we will first have to help them to cope with their experiences such as hearing voices or their personal convictions and that is by reducing the anxiety that arises from these experiences by using techniques such as cognitive interventions, which have been proven to be successful.

However, following these kinds of anxiety reduction techniques it is still necessary to help the person to learn to cope with the original problems that led to their mental health problems.

This mostly concerns a change in attitude towards these problems and those people involved with them.

This is not simple but is rewarding.

There is much more hope for recovery then you might think
There can sometimes be a positive outcome with being angry with psychiatry.

In the Hearing Voices Network there are a number of people whose anger at the system and the medication was the beginning of their recovery journey.

This anger seemed to motivate people to try to take their lives in their own hands again or look elsewhere for help that had proved to be more successful.

The catch 22 of course is that in mental health care, anger is often seen as part of the illness. Although anger is not a symptom of schizophrenia, it is instead interpreted as a lack of insight into the illness, which is a very disempowering interpretation.

On the other hand, the Hearing Voices Network has seen that those who adapt to the psychiatric care system and the labels provided, seem less able to recover than people who protest against their diagnosis and treatment and also plan their own ways.

From these experiences we should learn in mental health care. These experiences are well described by a number of well known psychiatric survivors like Peter Bullimore, Ron Coleman, Jacqui Dillon, Rufus May, Louise Pembroke and many others in the U.K. and elsewhere in the world.

How you can recover
It is easy to underestimate the great difficulty people find in talking about the original problem that led to the voices and other experiences. It can be because of shame, because of guilt feelings, because of anxiety. In many ways, the same process are at work as with traumatic stress disorder.

People are brainwashed during their, often, long periods of traumatisation. They are reduced to nothing, made very afraid, made dependant, are heavily punished when expressing their emotions, are blackmailed. So they really have to work hard to try and tell their story and have to be helped with that in a safe supporting relationship. Another factor of difficulty is the anxiety that telling their story may lead to the voices being more aggressive or that the flash backs of horrible pictures will become more severe. These can be experienced as very overwhelming and intrusive, sometimes akin to the the feeling of being sexually overwhelmed and raped.

However you are not powerless.

We do not necessarily expect that you will be able to change the system and neither do we think that you will necessarily start a collective protest against the concept of schizophrenia because of the harm it causes.

But you can:

Use your own experiences, your own contacts with psychiatric services, with mental health workers you trust and with other patients experiencing psychosis to start talking about and listening to other peoples’ psychotic experiences

Consider further what it is you are experiencing and ask other people explain what they are experiencing.

You also consider what happened in your past life and ask what has happened to other people that may have led to experiencing psychosis.

Then differentiate for yourself and with other people the kinds of experiences like hearing voices, ideas of reference, delusions, the expressions of your negative symptoms (like lacking initiative, isolating yourself etc).

You then can ask yourself; “What is the difficulty in coping with these experiences?” This will help you better understand the nature of your anxieties, depressiveness, feelings of powerless etc.

You then can discuss how these experiences have developed over time and how they possibly interrelate with each other.

If you are a mental health worker, family member or friend you could:

start to accept the experience as a reality and ask what has happened in their life that could possibly relate to these mental health problems and to begin with the life issue or complaint that first led to the experiences.

If they are confused about that then you go over their lives history asking what has happened to them in terms of illnesses they may have had; a loss of a close person; a loved one; having had problems in relationships with others, such as friends, family, parents, brothers and sisters; losing a job or failing to find one; housing or financial problems. It is also important to consider problems with emotions like aggression, physical abuse or having been belittled or having been aggressive themselves; or with sexuality, such as problems with sexual identity or sexual abuse etc.

If they have experienced one or more of these events and describe the problem, you ask if it could have anything to do with their voices, their paranoia, their beliefs and personal convictions etc. You just have to be clear to yourself and to others that psychotic experiences do not fall from heaven, but are related to serious problems a person has suffered in real life.

Then you are on the way to detecting the person’s problems and they might become less estranged from his/her self because of their psychotic experiences.

This takes time and you will meet also some resistance, because people often do not like to be reminded of terrible experiences and might be ashamed of them.

Those people we know are recovered all learned to express themselves, to give up shame and guilt after learning to manage their anxiety about their voices. They often wrote their stories down and then learned to talk about what has haapened. Some people hqve even started to speak in public and discovered that they have had useful experiences, that they can share with others.

They started living their lives not their voices and visions

In the mean time you can try out some interventions to reduce your anxiety, as they are described in articles and publications about cognitive psychological interventions or you could read books like “Accepting Voices” or “Recovery an Alien Concept”and “Making Sense of Voices” and consider how you might use for yourself the possibilities that are described in thes books (see publications).

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Conclusions:

Schizophrenia as an illness entity does not exist

The Schizophrenia Concept is harmful because: It mystifies your social and emotional problems and It makes it impossible for you to solve your problems

A diagnosis of “Trauma Induced Psychosis” should be recognised, as well as other cause related alternatives, like drug induced psychosis, identity induced psychosis etc.

Mental Health care should be oriented towards: Learning to cope with instead of the suppression of experiences; Analysing the causes of and learning to cope with emotions; Working toward recovery and the development of the person

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This article is an abridged version of a booklet written by Marius Romme and Paul Baker due to be published in 2007.