Professor Paul Bebbington tells only part of his own story in highlighting the important message that older medications for schizophrenia should be used at low doses (letters, 18 November).
His team's work on draft guidelines for pharmacological treatment of schizophrenia also highlights that the newer 'atypical antipsychotics are associated with a reduced risk of extra pyramidal side-effects even in trials where lower doses of haloperidol are used'. Yet, amazingly, the guidelines still recommend use of old drugs like haloperidol as first-line treatment.
The experience of National Schizophrenia Fellowship members and service users is that response to antipsychotics is highly individual. All have benefits and side-effects, of different importance to each person. People want informed choice, and to know doctors are free to prescribe the best option for them. If too ill to express choice, they must be able to trust doctors to prescribe the least damaging - especially as they may be compelled under the Mental Health Act to take it.
The guidelines team did not consult representative organisations before or during its work - only after the event. It did not even tell any of us that it was going on.
Fortunately, this subject has now been referred to the National Institute for Clinical Excellence, which has firm and commendable standards about involving all key stakeholders - including users - from day one.
The respected Cochrane schizophrenia group has confirmed what many users already believe: that psychiatric research rarely asks people about quality of life. We urgently need direct consumer views on this vital issue. That is what NSF, in concert with a number of other mental health charities, plans to obtain in a mass survey over the coming months. We will make sure that NICE hears from the real experts on antipsychotic medication: the people who take it.
Cliff Prior Chief executive National Schizophrenia Fellowship London EC2
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