Experts by experience

Posted Thursday 24 September 2009

As I gathered information for my new book, Psychiatric Drugs: Key Issues and Service User Perspectives, I became aware of how research trials of psychiatric drugs don't reveal the whole story.

Research intended to establish whether drugs are effective compares them with placebo (dummy pills). If their effect on relieving symptoms is greater than that of placebo and they are not considered to be too harmful, then they are passed as suitable for treatment for people with the diagnosis they have been tested for.

What this process misses out is the wide variety of responses people have to psychiatric drugs, and this is what emerges so clearly from surveys such a All you need to know?, a survey by the Scottish Association for Mental Health (you can download this as a PDF).

One example from this survey was the range of responses to the drug Risperidone, prescribed to people with diagnoses such as schizophrenia. Nearly a third, 30 per cent, said they found it "very helpful" but nearly as many, 28 per cent, reported that it was "very unhelpful". Comments ranged from "I don't know what I would do without my paroxetine [an antidepressant] and risperidone" to "being forced to take risperidone had an entirely negative effect on me and made me more ill than I have ever been in my life."

I found a similar range of experience when people talked about coming off psychiatric drugs. For example, some people coming off the antidepressant venlafaxine (Efexor) experience a particularly nasty sensation which is sometimes called brain shivers. But the Mind survey, Coping with Coming Off, revealed that of thirteen people trying to come off venlafaxine only two experienced this particular effect and five found coming off the drug fairly easy.

Taking and coming off psychiatric drugs is an unpredictable business. Assumptions based on generalised data cannot be relied upon. I suggest that prescriber and patient adopt an approach of cautious experimentation. Feedback and discussion are necessary to establish if the person taking the drug is benefitting sufficiently to justify the inevitable risks. Coming off psychiatric drugs should be approached in the same spirit.

I have some hope that we are moving in this direction. Guidance from NICE, Medicines adherence: involving patients in decisions about prescribed medicines and supporting adherence, effectively condemns the term 'compliance' and the one-sided practice that goes with it to the history books. The recovery approach places an emphasis on what works for the person rather than treating their diagnosis.

I hope this book can play some part in bringing the experiences and views of "experts by experience" - people who have taken psychiatric drugs - into debates about their effectiveness and good practice in prescribing them.

Jim Read is author of Psychiatric Drugs: Key Issues and Service User Perspectives and Mind's report, Coping with Coming Off.

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