Paul Wilson and his colleagues (On the evidence, 9 December) are right to highlight the poor quality of research into antipsychotic medication used in the treatment of schizophrenia. Decades of research tell us far too little about the central questions of quality of life in the long term, which are of most importance to users.
But they are wrong to go on to say the NHS should only fund the new antipsychotics when their use has been justified by reliable research evidence in everyday practice. This is to make service users pay the price for the research communitys failures.
For too many people, the side efects of antipsychotic medication are not just troublesome but toxic.
To be rendered rigid, trembling, impotent or obese by drugs given to make you feel better is traumatic and unacceptable, all the more so when people are increasingly being compelled to comply with treatments.
The extra cost of the new treatments pales into insignificance beside the personal and NHS costs of relapse. To regard the£1,000£2,000 per year cost of new medications as too high a price to pay for such a serious condition is pure prejudice. Such an argument would provoke public outrage if it was applied to drugs for treating a physical illness.
Enough people have taken the new drugs for long enough to tell us how they find them. At the national Schizophrenia Fellowship we will be joining with other charities to conduct a mass survey of users experiences to provide the first-hand evidence which researchers have so far failed to deliver.
People with schizophrenia deserve informed choice about treatment options, and to know that their doctors are able to prescribe the pharmacological and psychological treatments which best meet their individual needs, without cost rationing.
Lets have evidence-based medicine, but lets make sure it is users evidence that counts.
Cliff Prior Chief Executive National Schizophrenia Fellowship London EC2