Dear Community,

I am a 3rd year PhD student at the California Institute of Integral Studies, San Francisco. I am also a Marriage and Family Therapist intern and am currently studying for my licensing exam.

I am currently working on my dissertation proposal and I am particularly interested in interviewing 5-6 people who match the following criteria:

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

"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.

Abstract:

The following article is concerned with debates around schizophrenia. Some historical background to schizophrenia is also outlined. The theory, is that alternative support like long term clinical hypnotherapy and long term CBT plus psychotherapy and counselling is effective in helping some schizophrenics to reduce their medications to improve their quality of life. The main biographical source is a book which is coming out into print at the end of January 2007 by Rosalind Hewitt titled: “Moving On: A handbook of good health and recovery for people with a diagnosis of schizophrenia” by Karnac Books publishers. lifetime recovery in terms of my quality of life with my long standing schizophrenia for over 26 years. I have discovered these alternative therapies personally and I now report a temporary improvement in my condition. The conclusion is that the alternative therapies experience is at least effective in reducing my medication for schizophrenia to the international minimum recommended dosage level by the Medical Model The other inspiration is an article in The Psychologist, September 2005, p535 called “The NHS has got it wrong”. The analysis criteria is my evidence medically of my and so for me is an effective support mechanism to the Medical Model. Currently I am trying a medication dosage below any recommended minimum dosage levels but I am still in a stage of transition; its results are not finalised at this point in time.

The key phrases are that long term clinical hypnotherapy, long term CBT, long term counselling and long term psychotherapy - in combination - have never been medically documented before; this is a first international clinical trial of its kind.

The following is a brief history of schizophrenia:
The concept of “dementia praecox” which is the early term for schizophrenia and first established as late as 1898 was initially formulated by a German and Swiss psychiatrists namely Kraepelin and Bleuler. “Dementia” means a progressive intellectual deterioration and “praecox” means an early onset. The “dementia” however is not that associated with the ageing process but rather a term which Kraepelin saw as mental enfeeblement. The original major symptoms of schizophrenia according to Kraepelin are “hallucinations, delusions, negativism, attentional difficulties, stereotyped behaviour and emotional dysfunction.” Bleuler broke ranks with Kraepelin on two major points. He did not neccessarily believe that schizophrenia had an early onset and that it did not necessarily head towards dementia. Thus in 1908, Bleuler coined the new name of SCHIZOPHRENIA from the Greek roots of “schizen” meaning to split and “phren” meanng mind. In his opinion, this summed up the essential nature of the condition and it is still called this today.(Bootzin, Acocella, Alloy p365)

Schizophrenic symptoms for most people in Britain today are controlled with the use of psychotropic medication. For the last 26 years I have been under this regime.

But in October 2002 my schizophrenic medication reduction started – under MEDICAL SUPERVISION. At the same time I started to have weekly sessions of Cognitive Behavioural Therapy and Clinical Hypnotherapy – plus psychotherapy and counselling.

Now, nearly five years on, I have achieved a 64% medication reduction. This tremendous reduction has only been possible by persevering with my weekly therapy sessions, which have enabled me to cope with the substantial withdrawal symptoms – such as an increase in hearing voices, paranoia and delusional ideas. Simultaneously I am studying for a psychology degree at the University of Bolton which incidentally is funding my therapies as part of my disabled student package. All in all, I have found that these alternative therapies are an excellent replacement for my previous extensive medications. However, I will probably continue to be on a little medication for the rest of my life. I want to stress that such therapies need to be experienced over a number of years in order to be effective. The 12 weeks of Cognitive Behavioural Therapy on offer from the British National Health Service I have found to be inadequate. It is not long enough for a single medication reduction i.e. 5mgs. Even the International Pharmaceutical Industry recommends at least 16 weeks for a single medication reduction. So – the British National Health Service needs to greatly increase its provision of these different types of alternative therapies if it wishes to use them as a treatment for schizophrenia.

References:

Bootzin, Acocella & Alloy, Abnormal Psychology Current Perspectives, 6th edition, McGraw-Hill,INC. 1993

Hewitt, R., Moving On: A handbook of good health and recovery, For people with a diagnosis of schizophrenia. Karnac Publishers. 2007

by Romme, Marius,  Morris, Mervyn

Source: Mental Health Nursing, Vol 27 (2): 7 - 11 March, 2007

Marius Romme and Mervyn Morris outline their suggestions for a more helpful and cause-related alternative to the harmful concept of schizophrenia.

Abstract

This article explains why the term 'schizophrenia' is not just stigmatising, but also fundamentally flawed. We will show that it is a label without scientific validity, applied without reference to an individual's life experiences. Furthermore, its diagnosis ignores connections between these life experiences and core illness experiences. We urge mental health nurses and other professional to listen to what their patients are telling them and help them understand their experiences.

Key words

Schizophrenia, hearing voices, mental health, diagnosis, CASL

Introduction

On 11 October 2006 an initiative called CASL, the 'Campaign for the Abolition of the Schizophrenia Label' was launched by Paul Hammersley and others from the University of Manchester, The problems of labelling and stigma are already familiar to nurses, but it is the concept of schizophrenia itself as an illness entity that is rightly attacked in the campaign. This campaign is one that mental health nurses should support, because, as we will explain, the concept of schizophrenia is a problem that impacts on us all.

Schizophrenia is harmful because it conceptualises experiences in a way that makes it impossible to resolve the problems that lie at the roots of a person becoming ill. In order to explain this and establish a more helpful cause-related alternative, we will discuss the following issues:

1. The scientific validity of the concept is nil, and it does not refer to a brain disease.

2. The diagnostic process neglects the reasons for the experiences.

3. The relationships between the core illness experiences and life experiences are neglected.

4. The inter-relationships between the core experiences are neglected.

5. The core experiences do not represent expressions of psychopathology.

6. Learning to cope with the experiences and with the problems at the heart of the problem are neglected.

7. People who recover from being ill can achieve that outside of psychiatry.

Scientific validity

For many years, authors have criticised the concept of the illness we call schizophrenia, because it lacks both construct and content validity. In other words, putting together the experiences professionals call 'symptoms' to form the disease construct 'schizophrenia' is erroneous. And this being the case, any causal explanation of schizophrenia is meaningless.

The British researchers Richard Bentall and Mary Boyle, and also Walter Heinrichs, are particularly notable for their thorough literature reviews, in which they demonstrate that validity of the construct is missing. In Reconstructing Schizophrenia in 1990, Richard Bentall outlined his argument about this scientific error, and from his further examination of the literature he later concluded that:

'It would seem that schizophrenia is an illness that consists of no particular symptoms, that has no particular outcome, and that responds to no particular treatment. No wonder research revealed that it has no particular cause.' (Bentall, 1998).

Mary Boyle (1990) has examined the historical development of schizophrenia and shown that it has never been validated. Her conclusion is that Kraepelin and Bleuler (who coined the term) merely postulated the existence of a peculiar pattern of 'symptoms' that they then attempted - unsuccessfully to validate. Their studies never provided any justification whatsoever for the so-called peculiarity of the cluster of 'symptoms' they described. As Boyle states:

'None of them (including Schneider [who devised 'first rank' 'symptoms'] as well) presented evidence of having observed a set of irregularities which would justify a new hypothetical construct. Certainly, none of them identified a syndrome.' (Boyle, 2002 p.80).

Mary Boyle also studied the development of the DSM series (American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders) (APA, 1994) and concludes:

The development of DSM III, IUR and IV is based on question begging. Like Kraepelin, Bleuler and Schneider, the devisers of the DSM did not appear to doubt the validity of "schizophrenia": It might be complex, but it is a diagnosable disorder which clinicians recognise when they see (it). This cognitive starting point is crucial also in making failure seem like a temporary aberration'. (Boyle, 2002, p.151)

British-based Canadian researcher Walter Heinrichs (2001) carried out a Medline search of publications appearing between 1980 and 1999, reporting on objective disease markers in schizophrenia. His work constitutes a review of the results from neuroscience research. As we know, many claims have been made pertaining to the presence of specific disease markers in Schizophrenia. Heinrichs calculated the effect size of each of these studies. He states:

'In summary, this extensive appraisal across many areas of neuroscience reveals no common abnormality in all cases of schizophrenic illness. The strongest, most consistent evidence suggests that 50-70% of schizophrenics are deficient in cognitive brain function. In comparison, most of the neurobiological abnormalities in the illness, probably occur in a minority of patients. Moreover, close to 40% of the biological findings are so weak and variable that they may represent minor, unimportant, or chance abnormalities with no intrinsic link to schizophrenia.' (Heinrichs 2001, p.84)

A cause related alternative for the harmful concept of schizophrenia

___________________________________________________________________________________

The issues:

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:

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).

___________________________________________________________________________________

Conclusions: