When I was admitted to a psychiatric hospital, the clear message I received from the mental health system was that I was ill. Everything that I said and did was caused by my illness. The horrendous abuse which I had disclosed “never happened” – even thinking it did was part of my illness. If the abuse did happen (one psychiatrist did believe me) then, in his words, “Pandora’s box should never have been opened”.
Because I was ill, “I needed to take medication.” The fact that I didn’t want to take medication was “because I was ill.” If I wanted to get better, I “must accept my diagnosis and take medication” and then they would give me welfare benefits and a free bus pass. I wouldn’t ever recover. I would always have this illness. I wouldn’t be able to work. I didn’t know what was best for me. I lacked insight. As mental health professionals, they all knew what was best for me, because they were the experts.
As far as I am concerned, I am not mentally ill. What my abusers did to me was sick. I have had a perfectly natural, human response to devastating experiences. Living with the knowledge of what was done to me, and the way in which psychiatry has added insult to injury by blaming me, is enough to drive anyone mad. My first psychiatric admission in 1993 was my last. I knew then, and I still know now, that to be in such a desperate state in such an unsafe environment was potentially lethal. Ironically, the place that was meant to provide sanctuary for me became the place that nearly drove me over the edge once and for all.
Sadly, my experience, like many people in the psychiatric survivor movement, is still all too common. Every week across the world, intelligent people are expected to accept discredited diagnoses for fear of being labeled as `lacking in insight’ and having treatment forced on them. Every week thousands of people are coerced into taking medication that they don’t want and which frequently does more harm than good. Every week, people are incarcerated against their will, “for their own good”. Fighting for the rights of people deemed mad, many who have already suffered more than enough, is the last great civil rights movement.
The recent furore surrounding publication of the new DSM has provided a much-needed opportunity to discuss and debate crucial issues about how we make sense of, and respond to, experiences of madness and distress. Many psychiatrists, psychologists and other mental health professionals have expressed their dismay about the dominance and inadequacy of a biomedical model of mental illness.
Whilst we share these concerns, welcome these debates and support colleagues that are willing to take a stand, The Hearing Voices Network believes that people with lived experience of diagnosis must be at the heart of any discussions about alternatives to the current system. People who use services, are the true experts on how those services could be developed and delivered; they are the ones that know exactly what they need, what works well and what improvements need to be made. This is not just an academic or professional issue – it’s one that affects our lives. That is why we have launched this debate on DSM5 and psychiatric diagnoses.
PRESS RELEASE: Monday 20 May, 2013
HEARING VOICES NETWORK LAUNCHES DEBATE ON DSM 5 AND PSYCHIATRIC DIAGNOSES
IT’S THE BAD THINGS THAT HAPPEN TO YOU THAT CAN DRIVE YOU CRAZY!
The Hearing Voices Network in England has issued a position statement on DSM 5 and the wide issue of psychiatric diagnoses following last week’s debate on the need for a new paradigm in mental health services, reported largely as a ‘turf war’ between psychiatry and psychology. Concerned that this debate can all too easily sound ‘academic’ and miss the voices of the very people these systems impact upon – those diagnosed with mental health problems – HVN are taking the debate back to the people.
“We believe that people with lived experience of diagnosis must be at the heart of any discussions about alternatives to the current system.”
Jacqui Dillon, Hearing Voices Network, Chair.
In their statement, the Hearing Voices Network (HVN) state that psychiatric diagnoses are both scientifically unsound and can have damaging consequences. HVN suggest that asking ‘what’s happened to you?’ is more useful than ‘what’s wrong with you?’.
Concerned that essential funds are being wasted on expensive and futile genetic research, they call for the redirection of funds to address the societal problems known to lead to mental health problems and provide the holistic support necessary for recovery.
This is part of a growing, international movement by survivors of the psychiatric system who are questioning the adequacy of a biomedical model to make sense of and respond to madness and distress (see: InterVoice Online, MindFreedom, PsycDiagnosis, Mad in America, Occupy Psychiatry, The Open Paradigm Project
HVN invites people with lived experience of diagnosis and their supporters to engage in a discussion about the issues and help plan a way forwards.
“People who use services are the true experts on how those services could be developed and delivered; they are the ones that know exactly what they need, what works well and what improvements need to be made. This is not just an academic or professional issue – it’s one that affects our lives.”
Jacqui Dillon, Hearing Voices Network, Chair
Notes for editors:
- The Hearing Voices Network (England) is a national, user-led charity that supports people who hear voices, see visions or have other unusual experiences. The Hearing Voices Network is part of the rapidly expanding global Hearing Voices Movement with 26 Hearing Voices Networks operating, across 5 continents. The Hearing Voices Network’s position statement can be read, and commented on, via their website www.hearing-voices.org
- Hearing Voices Network Chair, Jacqui Dillon (07951 635 033) and Trustees Rachel Waddingham (07969 161 586) and Peter Bullimore (07950 837 694) are available for interviews.
Position Statement on DSM 5 & Psychiatric Diagnosis
DSM 5, the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders – often referred to as the ‘psychiatric bible’ – has now been released in the wake of huge controversy and debate. The alternative classification system, ICD, is based on exactly the same principles. Some of the world’s most eminent psychiatrists have spoken out about the current system.The former director of the US’s largest funding body for mental health research, the NIMH, recently described DSM as ‘totally wrong, an absolute nightmare’. The chair of the DSM 5 committee admitted that ‘We have been telling patients for several decades’ that the biological causes of distress are about to be discovered, but ‘We’re still waiting.’ Another senior psychiatrist said, ‘Patients deserve better.’ In the UK, clinical psychologists have challenged the use of diagnosis and the ‘illness’ model.
The Hearing Voices Network, alongside many of our professional allies in psychology and psychiatry, has serious concerns about the way we currently understand, categorise and respond to mental distress . We also recognise the confusion that can be caused when accepted facts, often presented to service users as truths, are challenged.
We believe that people with lived experience of diagnosis must be at the heart of any discussions about alternatives to the current system. People who use services are the true experts on how those services could be developed and delivered; they are the ones that know exactly what they need, what works well and what improvements need to be made. This statement outlines the main issues, as we see them, and invites people on the receiving end of a diagnosis to have a voice in this debate.
Psychiatric diagnoses are scientifically unsound:
- No objective tests: Unlike most fields of medicine, psychiatric diagnoses are not provided on the basis of objective tests or measures.
- They’re artificial: There is strong evidence that diagnoses do not represent meaningful clusters of problems or link to known biological abnormalities. Diagnoses are voted into existence by committee, representing opinion rather than scientific fact.
- Drug company involvement: There is growing concern that new diagnoses are both suggested and shaped by (initiated by) drug company funded research and interests.
- Unreliable: The diagnosis you receive from a psychiatrist is based on their opinion about what you have told them. Different psychiatrists often have different opinions about the same person, leading to multiple diagnoses. Two people with the same diagnosis may have nothing in common.
- Limited explanation: Whilst diagnosis seems to provide an explanation for people’s problems, this isn’t the case. People are told they have ‘schizophrenia’ on the basis of their unusual thoughts, experiences, feelings & behaviour. If they then ask why they are having these unusual experiences, they are told it is because they have ‘schizophrenia’. This circular argument explains nothing.
- Limited use: The issues raised above mean that diagnoses are a flawed basis for deciding on treatment, predicting outcomes and carrying out research.
Psychiatric diagnoses have damaging consequences:
- Misses the point: Increasing evidence demonstrates mental distress is an understandable reaction to adversity, including: bereavement, loss, poverty, discrimination, trauma, abuse and victimisation. By focusing on ‘what’s wrong with you’, diagnoses can stop professionals asking ‘what’s happened to you’.
- Missed opportunity: Psychiatric diagnoses can stop people addressing the links between social and economic policy and mental distress. Essential funds are used in the ongoing futile search for genetic markers instead of addressing the societal issues we know lead to mental health problems.
- Disempowers: Psychiatric diagnosis ignores people’s own explanations for their distress and encourages them to defer to an ‘expert’ for treatment. Having your reality redefined in terms of illness and biology is an incredibly powerful experience that can set the scene for a lifelong psychiatric career.
- Medication-focused: In diagnoses such as ‘schizophrenia’ treatment is primarily medication, which is becoming increasingly criticised for its harmful effects and lack of efficacy. Medication does nothing to address underlying difficulties.
- Human rights: People are expected to accept diagnoses for fear of being labelled as ‘lacking in insight’ and having treatment forced on them, violating their basic human rights. Others may, understandably, hide their voices or visions to escape forced treatment – blocking them from receiving help to cope with their experiences.
- Takes away hope: Diagnoses such as schizophrenia and personality disorder, seen as a life-long condition, can unnecessarily take away people’s hope for a meaningful recovery.
- Discrimination: People diagnosed with ‘severe and enduring mental illnesses’ are often subject to stigma, discrimination and exclusion. They may have trouble getting insurance, security clearance to travel overseas, and difficulty fostering or adopting children.
A Way Forward
Finding the best way to support those of us who are suffering and struggling to cope without relying on diagnoses and the existing system is a challenge. It can be hard to see what is possible when all we have known is what is available. Still, we want to engage people with lived experience of diagnosis and our allies, in a discussion to create a way forwards.
Our initial ideas include:
- Seeing mental distress as human and, ultimately, understandable: Rather than seeing voices, visions and extreme states as symptoms of an underlying illness, we believe it is helpful to view them as meaningful experiences – even if we don’t yet know what that meaning is. We believe it’s important to use human language when describing human experiences rather than medical terminology. Given the role of trauma and adversity, we need to start asking ‘what has happened to you?’ rather than ‘what is wrong with you?’
- Keeping the person in the driving seat: We want people to have the freedom to define their own experience. Support should be based on need, not diagnosis. Equally, people need to access a wide range of alternatives to understand and manage their experiences. Medication is just one way, amongst many, that people may choose. We need information about the pros/cons of each approach – true choice and collaboration, no coercion.
- Supportive communities: Mental distress is not just the domain of mental health services. Communities have an important role to play in supporting those who are struggling to cope. Community based options can run alongside, and as alternative to, psychiatry. Equally, these approaches must go hand in hand with greater awareness of the causal impact of social factors such as poverty, gender and racial inequalities, unemployment, deprivation and abuse, on mental distress
Invitation to Debate
We want to know what you think. So, what has your experience been of receiving a diagnosis? What has your experience been of alternatives to traditional services, like peer support? What aspects of professional care have been helpful? Whilst we’re hosting this debate on our website, we want you to talk about it in your Hearing Voices Groups and down the pub. Get a conversation going and tell us about it on here. This is not just an academic or professional issue – it’s one that affects our lives.
Join the debate: leave a comment on this page