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Terence McLaughlin (1947 - 2007)

Terence McLaughlin died on the 4th September 2007. He was very recently diagnosed with advanced lung cancer, and caught a secondary infection over the weekend. Terence was born in 1947, and was a militant revolutionary socialist for many years in industry before undertaking a psychology degree, which he completed at Manchester Polytechnic. His PhD 'Psychology and mental health politics: A critical history of the Hearing Voices Movement' at Manchester Metropolitan University was examined by Marius Romme in 2000.

During the period of his studies and then afterwards he brought radical perspectives to campaigns, conferences and publications against the power of experts to define what is normal and abnormal for others. He was then, until his death, executive editor of Asylum magazine. His innovative academic research work was always in the service of wider political struggles, and he sought to keep histories of resistance to ruling ideological paradigms and state practices alive. Those who knew him learnt so much that it will take a long time to reflect upon and find a way across the chasm his death opens up for revolutionary activity in the field of mental health.

Ian Parker

Terences' funeral will be on Tuesday 11th September at 1.30 at Stockport Crematorium. Anyone who knew him is welcome to come. The Humanist service will be followed by a wake at the Chorlton Irish Association Club. No black dress code, wear what feels right to celebrate his life.

Single flowers or small bunches of flowers only please. Donations to Asylum and the Hearing Voices Network if desired.

www.terencemclaughlin.co.uk

In remembrance of Terence Mclaughlin. Please go to this page to pay tribute to, remember, share experiences and talk about Terence and his work.

 

  CASL Support the Campaign for Abolition of the Schizophrenia Label

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Introducing CASL The Campaign for Abolition of the Schizophrenia Label Paul Hammersley and Terence McLaughlin

The idea that schizophrenia can viewed as a specific, genetically determined, biologically driven, brain disease has been based on bad science and social control since its inception. If the scientific argument against `schizophrenia' is judged to be won, it remains to take the evidence to the people, to explain and develop the alternatives in the full light of day. This is why the campaign is led by Asylum, the magazine for democratic psychiatry, psychology, education and community development. We believe the time is fully ripe for a paradigm shift across the field of mental distress and that the alternative knowledges and resources are now in place to mobilise for change. No more will we view the scandal where intelligent persons are expected to accept discredited diagnoses for fear of being labelled as `lacking in insight' and having treatment forced on them.

Read (2004) lists a fundamental dissatisfaction with the concept of schizophrenia as an illness that can be traced back over 80 years. More recently Bentall (1990, 2003), and Boyle (1990) have published elegant, well researched arguments clearly demonstrating that the concept of schizophrenia is neither valid nor reliable. Despite this, mainstream psychiatry continues to perpetuate the myth that when talking about ‘schizophrenia' we are discussing something that actually exists. For example, the opening statement of the NIMH public information website in the USA reads as follows:

“Schizophrenia is a chronic and severe disabling brain disease”

As Read (2004) points out, such an opinion is common in psychiatric textbooks and drug company pamphlets.

The CASL campaign is driven by two central factors:

1) The concept of schizophrenia is unscientific and has outlived any usefulness it may once have claimed.

2) The label schizophrenia is extremely damaging to those to whom it is applied.

Reliability For a diagnosis to have any clinical utility it must be reliable. That is to say there must be consistency in how individuals are diagnosed. There is no evidence that this has ever been the case with schizophrenia. Read (2004), has illustrated how it is possible for 15 individuals with nothing in common to be gathered together in one room and ALL be diagnosed with schizophrenia. Test- retest analysis is as low as 37% and in 1970 when 194 British and 134 American psychiatrists were asked to provide a diagnosis on the basis of a case description, 69% of the Americans diagnosed schizophrenia whilst only 2% of the British did so. There is no definitive evidence to suggest that the reliability of the diagnosis has improved since that date.

Validity An unreliable diagnosis cannot by definition be valid. However it is worth pointing out quite how poorly the diagnosis of schizophrenia performs in terms of validity. Firstly, a diagnosis of schizophrenia tells us nothing about cause. Biological research into cause offers little more than a series of dead ends (Bentall 2003, Read 2004), and the significance of genetic inheritance in schizophrenia has been vastly overstated and is seriously methodologically flawed (Joseph 2004). Secondly, a diagnosis of schizophrenia tells us nothing about prevalence rates. It is often blandly asserted that schizophrenia has a prevalence rate of 1% in all societies. This is not true; there is a wide disparity of prevalence between rural and urban environments and different research has shown prevalence rates of between 0.33 and 15%. In addition a diagnosis of schizophrenia tells us little about the course of the illness. Kraepelin initially suggested that schizophrenia was a chronic deteriorating condition in all cases. We now know that all outcomes are possible from chronicity to complete recovery. Interestingly Marius Romme, the Dutch Psychiatrist, has argued that those most likely to make a complete recovery are individuals who reject or drop out of the psychiatric system.

Stigma To be labelled ‘a schizophrenic' is one of the most devastating things that can happen to anyone. This label implies dangerousness, unpredictability, chronic illness, inability to work or function at any level and a lifelong need for medication that will often be ineffective (Whitaker 2005), but will usually cause unpleasant side effects. To champion the idea that schizophrenia is an illness just like any other (sometimes referred to as mental health literacy) makes the situation worse, in that it has been shown to increase amongst other things mistrust and a desire for social distance.

Sincere attempts have been made to rescue the word for humanity (Jenner et al., 1993) yet we have had to conclude that the continuation of the concept serves only the greed of Big Pharma in the pursuit of producing yet more `magic bullets' The desire of our campaign to place the label ‘schizophrenia' into the diagnostic dustbin, in which it most certainly belongs, is not based solely on the poor science that surrounds it but also on the immense damage that this label can bring about. A single word can ruin a life as surely as any bullet and schizophrenia is just such a word.

Japan abolishes schizophrenia? There is hope. In 2002 in order to remove the stigma and prejudice associated with the term schizophrenia, The Japanese Society of Psychiatry and Neurology renamed the condition. Their reasons were that the old term ‘Seishin Buntreyso Byo' (mind- split disease) was ambiguous, had purely negative connotations and was in part related to the inhumane treatment of most people who carried the diagnosis (Sato 2006). The new term is ‘Togo Shitcho Sho' (Integration disorder). It is defined not as a specific illness, but as a syndrome based on a stress vulnerability model, with many different causes, symptoms and outcomes. This change was brought about largely by lobbying from service users and family groups, and has been welcomed by service users and families alike.

Alternatives Alternatives already exist. Given the high levels of trauma in the lives of individuals who experience psychosis (Read et al 2004, Hammersley et al 2003) Professor Marius Romme in The Netherlands has for a number of years called for a new diagnostic category of post-traumatic psychosis. Colin Ross in the United States has made a similar call for a category of Dissociative Psychosis.

Yet alternatives also exist outside the language of psychopathology (Parker et al, 1995; Romme and Escher, 2000). In recognising the role of language and being prepared to make a practical deconstruction of what it produces (in this case forms of pathology) is taking one step in enabling communities, through self help networks, to regain control and ownership of human experience. Romme and Escher have remained particularly faithful to the contribution of knowledge of `experts by experience' and we remain firmly convinced that the future health of communities lies largely in the hands of organisations like the Hearing Voices Network and new initiatives like the Paranoia Network and depressiondialogues. The hope and promise of radical change is not something to be relegated wistfully to a bygone age but is firmly on the agenda today (McLaughlin, 2003). Furthermore growing alongside CASTL is a widespread enthusiasm to form a European Association for Democratic Psychiatry as the mechanism to bring about decisive change in public policy, media activity and social attitudes.

The CASL campaign began as collaboration between The COPE Initiative at the University of Manchester , the Hearing Voices Network and supporters of Asylum magazine (Asylum Associates). We are working to build a broad coalition of service users groups and like minded professionals, with the aim of bringing a more coherent and humane diagnostic system to service users worldwide. Yet it is more than that. We are looking to a future when we can talk less of the associations for democratic psychiatry and more of the International Association for Democratic Communities.

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References Bentall, R.P. (1990). Reconstructing schizophrenia. London : Routledge. Bentall, R.P. (2003). Madness Explained. Allen Lane . Penguin Books. Boyle, M. Schizophrenia: A Scientific delusion. London : Routledge. UK . Jenner, F.A., Monteiro, A. C. D., Zagallo-Cardoso, J. A. and Cunha-Oliveira, J. A. (1993) Schizophrenia: A Disease or Some Ways of Being Human. Sheffield : Sheffield UP. Joseph, J. The Gene Illusion: Genetic Research in Psychiatry and Psychology under the Microscope. Ross-on-Wye. PCCS Books. Hammersley, P.A., Dias, A., Todd, G., Bowen Jones, K., Reiley, B Bentall, R.P. (2002). Childhood trauma and hallucinations in bipolar affective disorder: A preliminary investigation. British Journal of Psychiatry, 182, 543-547. McLaughlin, T. (2003) `The view from democratic psychiatry.' European Journal of Psychotherapy, Counselling and Health 6(1) 63-66. Parker, I, Georgaca, E, Harper, D, McLaughlin, T and Stowell Smith, M (1995) Deconstructing Psychopathology London : Sage . Read, J, Mosher, L.R. & Bentall, R.P. (2004). Models of Madness. ISPS Publications. Romme, M. and Escher, S. (2000) Making Sense of Voices: a guide for mental health professionals working with voice-hearers. London : Mind Sato, M. (2006). Renaming schizophrenia: A Japanese Perspective. World Psychiatry, Feb, 5, 1, 53-55. Whitacker, R. (2004). The case against anti-psychotic drugs: a 50-year history of doing more harm than good. Medical Hypotheses, 62, 5-13

FIRST COMMENTS

Marius Romme Emeritus Professor of Social Psychiatry:

"We have known for quite some time that the concept of schizophrenia has no scientific validity. We now however have an alternative which is more helpful. It is time to challenge the old concept and leave it behind.

The old concept is harmful because, it is impossible to solve the problems of the patient diagnosed with this illness. We now not only know that the symptoms exist and the illness does not, but we now know more about where the symptoms come from. It is a false suggestion that the symptoms are the result of an underlying illness. The symptoms are partly a reaction to serious problems in the life of the person and partly a reaction towards other symptoms. Therefore attention should be given to the reality for the patient of his /her complaints and the background for each of them should be explored. Only then do we discover what the problems for the patient are, and only then we might be able to help solve those problems. When for example hearing voices is the complaint related to a serious problem in the person's life and the explanation of the person is that it is the voice of God, this can be a reaction on hearing that voice as an explanation. This in itself is not a symptom but a reaction to the strange overwhelming voice often with the metaphoric meaning of a needed spiritual power or a father figure, wanted or feared".

 

Jacqui Dillon National Chair of the Hearing Voices Network

'In our experience, gained through more than 15 years running a national network, listening to people who hear voices, many of them living with a diagnosis of schizophrenia; it is clear that there is a definite link between traumatic life events and psychosis. On a daily basis, we hear terrible stories of sexual, emotional and physical abuse, and the impact of racism, poverty, neglect and stigma on peoples' lives. We do not seek to reduce people to a set of symptoms that we wish to suppress and control with medication. We show respect for the reality of the trauma they have endured and bear witness to the suffering they have experienced. We honour peoples' resilience and capacity to survive, often against the odds. The reduction of peoples distressing life experiences into a diagnosis of schizophrenia means that they are condemned to lives dulled by drugs and blighted by stigma and offered no opportunity to make sense of their experiences. Their routes to recovery are hindered. Rather than pathologising individuals, we have a collective responsibility to people who have experienced abuse, to acknowledge the reality and impact of those experiences and to support them to get the help they need. Abuse thrives in secrecy. We must expose the truth and not perpetuate injustice further; otherwise today's child abuse victims become tomorrow's psychiatric patients."

 

Campaign for the Abolition of Schizophrenia Label By Dr. Terry Lynch, GP and psychotherapist, Limerick , Ireland .   Lynch, Terry (2004) Beyond Prozac: Healing Mental Distress, Ross-on-Wye, PCCS Books.

In our modern 21 st century, access to information has never been easier at any time in the history of the world. Yet, some aspects of life remain very poorly understood. One glaring example of this is the degree to which the general public understand – or more accurately, misunderstand – so-called ‘mental illness', and ‘schizophrenia' in particular.

The term ‘schizophrenia' needs to be abolished for a number of reasons. The so-called ‘illness' which the term is purported to represent is a gross misinterpretation of the experience of people so labelled. The schizophrenia label encourages the ongoing ignoring of key issues which are virtually always present in the life experience of people who receive this label. For example, issues such as great trauma in their lives; terror; immense loss of autonomy and of their sense of Self; overwhelm; powerlessness; immense emotional pain; intense isolation.

The term ‘schizophrenia' is taken to mean that a person who experiences certain experiences (such as hearing voices, becoming paranoid, experiencing ‘delusions', withdrawing to a major degree) is fundamentally abnormal; crazy; clearly and obviously suffering from a major illness, which we have come to call ‘schizophrenia'.

This interpretation is incorrect. Many mental health care workers who take the time to listen intently and work collaboratively with people who go through these experiences come to realise that, far from being abnormal or crazy, these experiences make sense in the context of the person's sense of Self, their experiences, and their life. By rejecting and dismissing the experiences, we also reject and dismiss the individual who is experiencing these.

The term ‘schizophrenia' has been taken a step further into inaccuracy and misinterpretation. The term is now widely seen as synonymous with the presence of a biological abnormality within the person's brain. This view has been enthusiastically promoted within some quarters, despite the reality that no consistent, reliable, or durable biological abnormalities have been identified, and in spite of the reality that the ‘diagnosis' is always, always made without reference to any tests, because there are no biological tests for this ‘condition'. This gross misrepresentation (ie that ‘schizophrenia' is known to be a biological illness) is used to justify the long-term (often life-long) use of mood-altering substances (often inaccurately referred to as antipsychotics) as the primary ‘treatment' of this ‘illness'.

The upshot of this worped logic and bad science is that recovery rates from ‘schizophrenia' in modern westernised societies trails well behind that in underdeveloped countries, according to World Health Organisation studies. The misguided obsession with imagined biological abnormalities over several decades has had the effect of reducing the attention on and research into psychological, social, human approaches to helping people get their lives back on track. There are many, many people – some of whom spoke at the Hearing Voices Network Annual Conference 2006) – whose recovery (from the traumatic experiences which caused their experiences of hearing voices, paranoia, etc) was impaired, and/or blocked by the preoccupation with the diagnosis of ‘schizophrenia' and its supposed ‘treatment' rather than working collaboratively with the person to explore the distress, seek to ascertain what may lie behind the distress, and with compassion, gentleness and caring, help the person to resolve their pain and move on with their life.

So-called ‘mental illness', including ‘schizophrenia', is one of the last remaining unrecognised apartheids left in our society. Well intentioned intervention is not necessarily effective intervention, and because it is well-intentioned, and provided by society's appointed experts, it can be even more damaging, subtle and pervasive.

Abolishing the label ‘schizophrenia' is an important step towards reversing the enormous travesty of natural justice which has existed in this area for decades. Not having a label, a ‘box' to put people into, will facilitate the development of more humane, healing, collaborative working relationships between all concerned, including the experiencer and those who care, love, and work with them.

 

A Carer's View of Schizophrenia

Some people like the term ‘schizophrenia'. The diagnosis does enable some service users to access benefits they might otherwise not, so they may find it useful. Some psychiatrists like to have a simple label they can use to describe people who otherwise have a confusing and diverse range of inconsistent symptoms; it suggests that they recognise these behaviours. In so doing, it enables them to ignore and discount the history and traumas of the service user, and all aspects of his or her life since everything is dismissed as ‘psychosis' and ‘fantasy'. Some families think initially but mistakenly that if there's a ‘diagnosis', it represents a well-defined situation for which a genuine treatment and route to recovery is known, as happens with other health problems. So, initially, there may be brief relief with the diagnosis. However, this does not last. All affected families are horrified when the label ‘schizophrenia' is soon attended by another damning label, that of ‘severe and enduring mental health problem', yet despite this devastating prospect, they are urged NOT to give up hope as this is important to their relative's recovery.

In practice, most families continue to hold the hope of recovery, and to work unstintingly for their family member's support with absolute dedication sometimes for decades and often despite the unsupportive disinterest, and sometimes outright hostility and inhumanity, of many staff. The family often hold the flame which helps and inspires the service user throughout his illness. This is called LOVE, and it is discounted and dismissed by the services and the NHS obsessed as it is with regulations and procedures.

The government has ‘recovery' as its goal though how to reconcile ‘recovery' with the ‘severe and enduring' label is a contradiction neither explored nor explained, and the treatment offered continues to be the same drugs.

As carers begin to search for information, they meet other carers and families; they come to know service users also diagnosed with ‘schizophrenia' who have been maintained on drugs for decades and whose lives, along with those of their families, are slipping by in poor or no quality, stigmatised, rejected, isolated and dumped by mainstream society.

Soon, the vast range of symptoms and histories included in the umbrella diagnosis ‘schizophrenia' is apparent and it is inconceivable to everyone except the psychiatrist that all these people could, or should, have the same diagnosis or the same treatment. By relying almost entirely on drugs, other therapies of proven value are ignored, often not even mentioned. When carers / families want to discuss other options with the psychiatrist, their request is usually refused or ignored. So, if you're in the right place with more forward thinking and humane approaches available, your service user family member can access empathic therapies, taking into consideration his/her specific history and experiences with understanding and allowing him/her to process them then move on with improved chance of recovery. But, if you are not in an enlightened area, you are supposed to accept the total devastation of your family meekly and without question.

‘Schizophrenia' was coined nearly a century ago. No other branch of medicine continues to rely on the faltering first footsteps taken so long ago. It is time it was abandoned so that service users can be treated individually, have their symptoms and histories properly addressed so they can recover proper control of their lives. Once schizophrenia has been abandoned as a concept, the medicalisation of mental illness and the domination of the drug companies is no longer acceptable. This is not recovery; it is sedation and containment using a chemical cosh lobotomy. Service users need appropriate individualised support, so that the 80% recovery rates achieved in the developing World can be seen here instead of the 20% we have currently. A recent comment by an enlightened psychiatrist was to the effect that the service user was in charge of his own recovery, but the psychiatrist supported his/her journey properly so that it was ordered and (s)he was not overwhelmed in the process.

Best wishes Judith Varley

 

Mary Boyle University of East London

The claim that there exists a biologically based diagnosable disorder called schizophrenia has been the focus of intense and persistent criticism and been shown to be scientifically bankrupt. But the label is also morally problematic. It is imposed on people in the absence of any evidence base and used without their informed consent (informed that is, of the controversies surrounding it). The label also appears to justify drugs as the major intervention as well as a vast and very unsuccessful research programme searching for biological and genetic causes.

But schizophrenia is much more than a label. Behind it lies the medical model – the claim that emotional distress and problem behaviour are pathological symptoms of illness or disorder rather than meaningful responses to serious problems and adversity in people's lives and relationships. The public know (often from their own experience) that people become distressed because of what is happening in their lives. This understanding, however, may be stretched in the case of the bizarre seeming experiences and behaviour which are labelled as schizophrenia and which, we are told, are outside the range of our understanding of ‘ordinary', everyday behaviour and experiences, hence the invoking of a brain disease to account for them. Yet instead of leading us to the conclusion that ‘mental illness is an illness like any other', the evidence points in a quite different direction – that schizophrenic behaviours and experiences are ‘behaviours and experiences like any other' – understandable in the same terms as we understand ‘ordinary' behaviour and meaningful in the context of peoples lives. If we acknowledge this, then we enter a world of ideas and possibilities entirely different from and far more constructive in terms of helping people, than those created through claims about schizophrenia as a brain disease.

Claims about illness and brain disease have been so persistent and plausible not just because psychotic behaviour and experience may indeed be difficult to understand but also because schizophrenia research is so often presented in ways which systematically obscure evidence against it (see www.critpsynet.freeuk.com/Boyle.htm for many examples of this). Not only that, but service users, the public and professionals are rarely presented with alternatives so that ‘schizophrenia as brain disorder' seems all the more plausible simply because there appears to be no other way of thinking.

It is exactly because schizophrenia is not just a descriptive label but an entire way of thinking about people that we need to be alert to the danger that it will be replaced with an equally problematic label leaving intact the language and assumptions of symptoms and illness on which it is based. Indeed the label ‘dopamine disregulation disorder' (which does exactly this) has already been suggested, focussing, again, on what is supposedly going on in people's brains rather than their lives and implying that drugs are still the preferred intervention. What is being called for instead (and is already available) is not simply a different label but entirely different ways of thinking about those psychological experiences and behaviours which have been mislabelled and misunderstood as symptoms of schizophrenia.

 

Lucy Johnstone Academic Director

Bristol Clinical Psychology Doctorate Author 'Users and abusers of psychiatry', Routedge 2000.

We have known for a long time that the term 'schizophrenia' is scientifically meaningless. It is not actually a 'diagnosis' in a medical sense, since it is not based on bodily symptoms or signs. Instead, the criteria consist of a ragbag of social judgements about people's thoughts, feelings and behaviour - experiences which actually make sense in the context of people's histories of abuse and deprivation. The people who are so labelled may well have difficulties and be in urgent need of help, but this is not the way to help them. 

We used to be convinced that disturbed or disturbing behaviour could be explained by the presence of 'evil spirits'. No one could actually see them, but we knew they were there. We are equally convinced today by the explanation that distressed people are, in effect, possessed by 'schizophrenia'. No one can detect the 'biochemical imbalance' or the 'genetic vulnerability' that is meant to underlie it, but we know the 'illness' is lurking in there somewhere. We know that the reason people suffer 'delusions' is because they have 'schizophrenia'. And how do we know they have 'schizophrenia'? Because they have 'delusions', of course!

Strip away the pseudo-scientific rhetoric and it is obvious where the real delusion lies. Believing in this 'illness'  has powerful benefits for professionals and drug companies, and indeed for society at large, which has found it very convenient to conceal the effects of widespread damage and abuse under this ever-flexible label. Perhaps this is why we have failed to draw the moral from the pile of research indicating that this kind of breakdown has a far better outcome in non-industrialised countries that have not come under the influence of Western psychiatry.The people who lose out, of course, are the 'patients' or service users, for whom the diagnosis is often an introduction into a lifetime of dependence on psychiatric services and toxic drugs, alienated from mainstream society by fear and stigma. They would do far better in a village in rural India or Africa . Perhaps this also explains why we have failed to follow more enlightened examples from our own history  - moral management, therapeutic communities and so on - or from places like Scandinavia which are moving well away from diagnosis and medication as first-line interventions.

'Diagnosing' someone with 'schizophrenia' is one of the most damaging things one human being can do to another. Re-defining someone's reality for them is the most insidious and the most devastating form of power we can use. It may be done with the best of intentions, but it is wrong. We now have a chance to put some of this right, by abolishing the label - not to replace it with another fake-medical term, but instead to work with individuals towards a  true understanding of how and why they come to experience extreme forms of emotional distress.

 

 

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Supporting and promoting community groups and creative projects has always been a function of Asylum. Promoting unity of action between diverse groups has never been more urgent than now. For example we are currently seeking to extend our collaboration with UKAN and we continue to support the Hearing Voices and Paranoia Networks. Women at the Margins (WAM) have been the first group to vote to become an Asylum Associate Group.

Please consider making your group an Asylum Associate. All we ask is that you agree to take a significant number of the magazine at the discount price of £2 for multiple orders and we will endeavour to provide your free advertising. Put the profits of your sales towards your group.

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We always welcome your ideas and articles (although we regret we are still not in a position to provide payment) Articles which are short (less than 1000 words) are more likely to be printed. Please note, we can only accept copy by email or on disc. Please be patient as we are staffed by volunteers.

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  Soul Survivor Mary & Jim Maddock IN PRESS ORDER

"If there is any consolation for the loss of twenty years, it is that from it comes this wonderful book." Dorothy Rowe.

V15 N2 OUT NOW SUBSCRIBE WORLD HEARING VOICES DAY DETAILS PAINTING THE RAINBOW BY WAYNE D CLAY ORDER STRONGER THAN EVER BY ROSE SNOW ORDER

REVIEW OF 'THE KERR-HASLAM INQUIRY' BY PHIL VIRDEN

READ © Asylum Magazine 2002

 

Terence McLaughlin Memorial                                                  Our poet, Grainne, is included in this picture with her son, Joshua.  You can read one of her excellent poems 'Schizophrenia' in our poetry section.

by David W. Oaks — last modified 2007-09-12 22:34

Mary and Jim Maddock from MindFreedom Ireland attended the memorial service for Terence McLaughlin, the editor of Asylum magazine. Here is their report. Jim and Mary are in the below photo (on left) and Terence, who helped publish their book, is celebrating on the right.

           TERENCE MCLAUGHLIN. R.I.P.

Jim and I have just returned from Manchester where we joined in one of the most meaningful services in remembrance of Terence for the last time. I first met Terence at an INTAR meeting in Kilarney and our spirits united immediately.

We both loved music and we shared the rhythm of life then for a short time. 

It was then I told Terence we were writing our book and he took an instant interest.

Yesterday, I was amazed to find out what an accomplished musician Terence was himself. The service began with a Flamenco performed by him on his guitar. Later we heard his beautiful and poignant rendering of Bob Dylan’s ‘Restless Farewell’. While we all listened spellbound, there was hardly a dry eye among his family and friends. The writings of Kahil Gibran have always been my bible and I was not surprised to find out that Julie his partner read his heartfelt words on ‘love’ so lovingly and sincerely at his last farewell also. “Love one another, but make not a bond of love. Let it rather be a moving sea between the shores of your souls”.

Terence has six beautiful children Mano, Juanita, Roisin, Mia, Grania and Carmen and they were all there to give him tribute.

He was a man loved and revered by many and everyone was struck by his integrity, gentleness, modesty, loving nature and most of all his sense of, his permanent wish and his constant action for social justice. It was fitting that we all sang ‘The Internationale’ led by the radical English psychiatrist Phil Thomas:

 

Then comrades, come rally.

And the last fight let us face.

The Internationale,

Unites the human race.

He came to visit us in Cork for the first launch of our book Soul Survivor—A Personal Encounter with Psychiatry last December 2006 and because of weather conditions he stayed with us a little while longer that was intended. It was because of this that he talked to David Oaks on Skype for the first time. His aspiration was that Asylum and MindFreedom International would connect and work together for the nonviolent revolution in the mental health system. 

Now that I had come to know both David and Terence I knew this was a logical conclusion and I was delighted they were getting to know each other. It is a pity their paths led together for such a short time but it would be his firm wish that this bond should remain even stronger now he is no longer with us in bodily form.

Your time with us was all too short but our lives have been enriched by you Terence McLaughlin.

Thank you for all your dedicated and inspirational work over the years and may we have the courage and strength to carry it on. 

We loved you, Terry.Mary and Jim Maddock

MindFreedom Ireland

Related content Terence McLaughlin, editor of Asylum magazine, dies Join, Renew, Donate to MindFreedom International. Mad Market Books & Gear

We are MFI

Ted Chabasinski Ted received electroshock at the age of six, and spent 10 years of his youth locked up inside a state psychiatric institution. He became a psychiatric survivor movement leader in 1971, and later became an attorney. He has served on the board of MindFreedom International for several years. (Photo by Tom Olin)

                            LYDIA IS JOINING MINDFREEDOM INTERNATIONAL YOUTH COMMITTEE

 

WE ARE PROUD TO ANNOUNCE (MADPRIDE!) THAT ONE OF OUR POET'S AND MEMBER OF MINDFREEDOM IRELAND, LYDIA WALSH - YILDIRIM, IS JOINING MINDFREEDOM INTERNATIONAL YOUTH COMMITTEE.  YOU CAN READ SOME OF HER POETRY AT OUR POETRY SECTION. 

 

                                                          CONGRATULATIONS LYDIA.

Drugging expectant and nursing mothers is a terrible idea.  Please sign this petition. Vince Amy Philo writes:

For years, the March of Dimes has warned not to use meds while pregnant. Why now encourage mothers to take drugs? Please register this extreme objection to the proposed MOTHERS Act (S. 1375) which is now before you in committee. It is my earnest hope that you will immediately defeat this bill in committee. The bill has been brought to you under the guise of ensuring safety or support for new mothers - however, nothing could be further from the truth.

The bill was originally proposed in response to the death by suicide of Melanie Stokes, a pharmaceutical rep. who took her own life by leaping from a balcony several stories off of the ground. Contrary to popular understanding it was not post-partum depression that killed Melanie, but the numerous antidepressant drugs she was taking, which the FDA confirmed double the suicide risk. Nobody is suggesting that new moms do not ever experience mood swings, depression, or even psychotic episodes. The more important issue is what the effect of this bill will be and why nobody is addressing potential methods of prevention. Everyone knows how many young moms experience gestational diabetes, but who is addressing the even higher rate of gestational hypoglycemia, which often initially manifests as depression? This is a physical condition that is treated with diet and is exacerbated by antidepressants (which list hypoglycemia as a side effect). To simply screen women for post-partum mood disorders and ensure that they get "treatment," we would be setting families up for the expectation of tragedy and increasing the chances of that actually happening when we refer them to medical "professionals" who are oblivious to the negative mind-altering effects of psychiatric drugs. A popular opinion among medical caregivers these days is that "post-partum mood disorders" must be a sign of an underlying biochemical imbalance and would be corrected with drugs. Current drugs used on post-partum women include SSRIs, atypical antidepressants, and even antipsychotic drugs. These pose a significant risk to the immediate safety and health of women as well as their children and families. SSRIs carry a black box warning for suicide and the most popular one, Effexor (the same med. Andrea Yates was taking when she drowned her 5 children), has the words “homicidal ideation” listed as a side effect. Nearly every recent case of infanticide which has made news can be clearly linked back to a psychiatric drug. These drugs endanger babies and mothers. Additionally, the drugs can be extremely addictive and also pose a risk to nurslings or babies exposed in subsequent pregnancies. Some babies have died from SIDS linked to exposure from pregnancy or nursing; others have experienced coma, seizures, GI bleeding, heart defects, lung problems, and many babies died before reaching full term or soon after birth. The bill does not address the fact that studies show that biological agents (antidepressants for example) cited in the bill and already prescribed to pregnant women can cause congenital heart birth defects where children have had to undergo open-heart surgeries to correct this. Also, some babies are being born with organs outside their bodies, requiring immediate surgery. In closing I want to re-emphasize the total lack of any real answer to post-partum depression posed by this bill. If we can prevent post-partum depression or support moms through it, or offer proven SAFE and EFFECTIVE natural alternatives to dangerous drugs, then we should. However we should never, ever become party to a pharmaceutical campaign to push drugs on the public. We will set ourselves up for disaster if we allow an invasion into the privacy of every family in the country and suggest to our most vulnerable citizens that they might be mentally ill. We must do everything in our power to protect innocent children, and giving their mothers addictive drugs which pose a significant risk of causing suicide and violence does not protect anyone. It does cause the child to become addicted while still in the womb and sets up drug dependence which can be lifelong. We still have no idea what effect most drugs have on developing brains. It might take decades for the impact on the developing brain to become apparent. Sincerely, Amy Philo Founder, www.uniteforlife.org Co-Founder, www.chaada.org SIGN THE PETITION AT THIS LINK. http://www.thepetitionsite.com/1/stop-the-dangerous-and-invasive-mothers-act

STOP THE DANGEROUS AND INVASIVE MOTHERS ACT

Marcia Angell is Senior Lecturer in Social Medicine, Harvard Medical School, Cambrige, Mass., and the author of The Truth About the Drug Companies: How They Deceive Us and What To Do About It (2004). After completing undergraduate studies in chemistry and mathematics at James Madison University in Harrisonburg, Virginia, Angell spent a year as a Fulbright Scholar studying microbiology in Frankfurt, Germany. After receiving her M.D. from Boston University School of Medicine in 1967, Angell trained in both internal medicine and anatomic pathology and is a board-certified pathologist. She joined the editorial staff of NEJM in 1979, and became executive editor in 1988 and interim editor-in-chief from 1999 until June 2000.

http://www.cmaj.ca/cgi/content/full/171/12/1451

Over and above

Excess in the pharmaceutical industry

Marcia Angell

The main point about excess in the pharmaceutical industry is how much there is of it. Here I can touch on only a few specifics about this altogether over-the-top business.

Figure. Photo by: Earthlore

 

Profits

Although the pharmaceutical industry claims to be a high-risk business, year after year drug companies enjoy higher profits than any other industry. In 2002, for example, the top 10 drug companies in the United States had a median profit margin of 17%, compared with only 3.1% for all the other industries on the Fortune 500 list.1 Indeed, subtracting losses from gains, those 10 companies made more in profits that year than the other 490 companies put together. Pfizer, the world's number-one drug company, had a profit margin of 26% of sales. In 2003, for the first time in over 2 decades, the pharmaceutical industry fell slightly from its number-one spot to third, but this was explained by special circumstances, including Pfizer's purchase of another drug giant, Pharmacia, which cut into its profits for the year. The industry's profits were still an extraordinary 14% of sales, well above the median of 4.6% for other industries.2 A business that is consistently so profitable can hardly be considered risky.

Excess profits are, of course, the result of excess prices — and prices are excessive principally in the United States, the only advanced country that does not limit pharmaceutical price increases in some way. Of the top 10 drug companies in the world, 5 are European and 5 are American, but all of them have the US as their major profit centre. In the US, uninsured patients (of which there are many) are charged more for drugs than those who have large insurance companies to bargain for them, and the prices of prescription drugs are generally much higher to start with than in other advanced countries. Moreover, the prices of top-selling drugs are routinely jacked up in the US at 2 to 3 times the general rate of inflation.1,3,4

"Me-too" drugs

The main output of the big drug companies is "me-too" drugs: minor variations of highly profitable pharmaceuticals already on the market.5 Some me-too drugs are gimmicks to extend monopoly rights on an older blockbuster. For example, the antacid Nexium was AstraZeneca's virtually identical replacement for Prilosec when its exclusive rights on the older drug expired. Others are attempts by competitors to cash in on lucrative markets. For example, the top-selling drug in the world, Pfizer's Lipitor, is the third of 3 me-too drugs to cash in on the success of the first statin, Merck's Mevacor. All of these drugs inhibit the same rate-limiting enzyme in cholesterol synthesis. There is generally no good reason to believe that one me-too drug is better than another, since they are seldom compared head-to-head at equivalent doses in clinical trials. Instead, they are tested against placebo, and so all we know is that they are better than nothing. In fact, it's conceivable that, within me-too families, each successive drug is actually worse than the one before. Without suitable comparative testing, we'll never know.

Because me-too drugs are cheaper and less risky to develop and have ready-made markets, the industry increasingly relies on them. From 1998 through 2003, 487 drugs were approved by the US Food and Drug Administration (FDA). Of those, 379 (78%) were classified by the agency as "appear[ing] to have therapeutic qualities similar to those of one or more already marketed drugs," and 333 (68%) weren't even new compounds (what the FDA calls "new molecular entities"), but instead were new formulations or combinations of old ones. Only 67 (14%) of the 487 were actually new compounds considered likely to be improvements over older drugs.5

This state of affairs is growing worse. The industry justifies me-too drugs by arguing that they provide back-up for patients who don't respond well to already available drugs and that the competition keeps prices down. Neither argument has much merit. The claim that back-up me-too drugs are clinically useful is rarely tested in trials. Drug companies don't test their me-too drugs in people who haven't responded to another drug (or have had unacceptable side-effects). Anecdotes, of which there are plenty, are notoriously unreliable. In any case, while it may be reasonable to have 1 back-up available, it's hard to make the case for 4, 6 or 8.

As for price competition, there is very little of it. Me-too drugs are almost never promoted as being cheaper than the others. Instead, companies imply that they are better in some way. Sometimes they do this by touting the results of clinical trials in which the drug was used for a slightly different indication. (These and other kinds of phase IV or post-approval studies consume about a quarter of the industry's much-vaunted R&D [research and development] expenditures.6) But the fact remains that in the US the prices of drugs in most me-too categories are almost never reduced over time, despite the introduction of new competitors. Instead, prices are relentlessly increased.

Marketing

Closely tied to excess me-too drugs are excessive marketing expenditures. For decades, the big drug companies have spent far more on "marketing and administration" (companies have slightly different names for this budgetary item) than on anything else. Throughout the 1990s, for example, the top 10 drug companies in the world consistently spent about 35% of sales on marketing and administration, and only 11% to 14% on R&D.7 (For that decade, they took in profits of 19% to 25% of sales.) Just looking at the top 10 US companies in 2002, expenditures for marketing and administration were 31% of sales, compared with only 14% for R&D.1 That comes to an astonishing $67 billion dollars of their $217 billion in sales.

Where did all that money go? No one can say for sure, because the drug companies do not make that information publicly available. But one can make some reasonable estimates. First, the lion's share probably went to marketing, not administration. That assumption is supported by the fact that, according to the Pharmaceutical Research and Manufacturers of America (PhRMA), the industry's trade association, 35% of its members' personnel in 2000 were in marketing, compared with 12% in administration.6 Marketing includes expenditures for "education of medical professionals," which is probably the biggest single chunk of it. Administration includes executive salaries (which are huge8), legal costs and the overhead associated with running any large business.

Most marketing is directed toward persuading doctors and patients to choose one me-too drug over another, usually without a scientific basis for doing so. For that reason, free samples are mainly newly patented, me-too drugs. It takes a lot of promotion to convince people to select one me-too drug over another. AstraZeneca was reported to have spent a half-billion dollars in a year to switch Prilosec users to Nexium.9 In contrast, a uniquely important drug would require very little promotion.

Advertising also expands the total market. Drug companies increasingly promote diseases to fit drugs, rather than the reverse. They try to persuade people in affluent countries that they are suffering from conditions that need long-term treatment. Thus, millions of normal people come to believe that they have dubious or exaggerated ailments such as "generalized anxiety disorder," "erectile dysfunction," "premenstrual dysphoric disorder" and GERD (gastroesophageal reflux disease). That, too, is expensive.

The big drug companies like to say that prices have to be high to cover their R&D costs, but it would be truer to say they are high to cover their marketing costs — and their outsize profits.

Influence on the medical profession

The medical profession has largely abdicated its responsibility to educate medical students and doctors in the use of prescription drugs. Drug companies now support most continuing medical education, medical conferences and meetings of professional associations.10 Although they call it education, the billions of dollars they put into it comes out of their marketing budgets. The industry also provides students, house officers and physicians in practice with meals, trips to exotic locations and many other blandishments. Although medical and industry associations have issued guidelines that would limit these gifts, codes of conduct are entirely voluntary and full of loopholes.

Although it is self-evidently absurd for medical professionals to look to an investor-owned company for an impartial, critical evaluation of its own products, there is ample evidence that marketing masquerading as education does increase the use of a drug; indeed, if it did not, heads would roll in executive suites, since these companies are not charities. And so why does the profession pretend to believe that drug companies, in contrast with all other businesses, can provide objective information about their own products? Unfortunately, the answer is because it pays — in CME credits, perks and free lunches. But ask yourselves, fellow physicians, why drug companies should be giving you any gifts at all, especially since they just tack the costs on to the price of drugs. The profession should pay for its own education, just as other professions do.

Influence on government

The pharmaceutical industry has the largest lobby in Washington, DC — there are more pharmaceutical lobbyists there than members of Congress — and it gives copiously to political campaigns.11 As a result, the prescription drug legislation and policies that come out of Washington are usually made to order for the industry. Here are just a few examples:

 

A series of laws has enabled drug companies to extend the exclusive marketing rights of brand-name drugs through a variety of manoeuvres, including suing generic companies, sometimes repeatedly, to gain additional 30-month periods of exclusivity. The fruits of publicly funded research are virtually given to drug companies, with no requirement for reasonable pricing. Americans are prohibited from importing prescription drugs from countries where they are less expensive, most notably Canada. The FDA does not require drug companies to test their new drugs against old ones for the same condition, even when several drugs of the same class are already on the market. Most stunningly, in 2003 Congress passed a Medicare prescription drug benefit that explicitly prohibits the agency from using its purchasing power to bargain for low prices or discounts. That makes prescription drugs unique in the Medicare program, which does regulate doctors' fees and hospital reimbursement. Furthermore, every other large insurer bargains with drug companies for lower prices or discounts, including the Veterans' Affairs System and the Department of Defense.

I won't take space to discuss some of the other excesses, such as the growing influence of drug companies on the design and reporting of clinical trials. The specific excesses already noted should be sufficient to show why prescription drug expenditures in the US are so high and so central to the struggle to contain rising health costs. Although outpatient prescriptions accounted for only 12% of US personal health care expenditures in 2002, they were its fastest growing component, increasing at an unsustainable rate of about 15% per year.12 The excesses of the pharmaceutical industry are perhaps the clearest example of the folly of allowing health care expenditures and policies to be driven by largely unregulated market forces and the profit-making imperatives of investor-owned businesses.

References

 

Pattison N, Warren L. 2002 drug industry profits: hefty pharmaceutical company margins dwarf other industries. Washington (DC): Public Citizen Congress Watch; June 2003. Available: www.citizen.org/documents/Pharma_Report.pdf (accessed 2004 Nov 3). Fortune 500: How the industries stack up. Fortune 2004;149(7):F26. Bouton D, editor. Out-of-bounds: rising prescription drug prices for seniors. Publ no 03-106. Washington (DC): Families USA; July 2003. Available: www.familiesusa.org (accessed 2004 Nov 4). Hensley S. Drug prices rise at faster clip, placing burden on consumers. Wall Street Journal 2003 Apr 15;Sect D:4. US Food and Drug Administration Center for Drug Evaluation and Research, Department of Health and Human Services. NDAs approved in calendar years 1990–2003 by therapeutic potentials and chemical types. Jan 21, 2004. Available: www.fda.gov/cder/rdmt/pstable.htm (accessed 2004 Nov 3). Pharmaceutical Research and Manufacturers of America (PhRMA). Pharmaceutical Industry Profile 2002. Washington (DC): PhRMA; 2002. p. 79. The Henry J. Kaiser Family Foundation. Prescription drug trends: a chartbook update. Publ no 3112. Menlo Park (CA): The Foundation; 2001. p. 45. Available: www.kff.org (accessed 2004 Nov 4). Mahan D. Profiting from pain: where prescription drug dollars go. Publ no 02-105. Washington (DC): Families USA; July 2002. Available: www.familiesusa.org (accessed 2004 Nov 4). Harris G. As a patent expires, drug firm lines up pricey alternative. Wall Street Journal 2002 Jun 6;Sect A:1. Relman A. Separating continuing medical education from pharmaceutical marketing. JAMA 2001;285:2009-12.[Free Full Text] Aaron C, Lincoln T. The other drug war 2003: Drug companies deploy an army of 675 lobbyists to protect profits. Washington (DC): Public Citizen Congress Watch; June 2003. Available: www.citizen.org/documents/Other_Drug_War2003.pdf (accessed 2004 Nov 4). Levit K, Smith C, Cowan C, Sensenig A, Catlin A. Health spending rebound continues in 2002. Health Aff 2004;23:147-59.