Campaigners have challenged the National Institute for Clinical Excellence not to ignore the views of people with mental health problems in its forthcoming schizophrenia treatment guidelines and assessment of antipsychotic drugs.
In a survey report to be published on Friday, the National Schizophrenia Fellowship, Mind and the Manic Depression Fellowship say: 'Existing clinical research has not asked the people who take the medicine what they think.'
The survey of 2,222 people with mental health problems reveals that nearly half (44 per cent) of those on medication had stopped taking it without the support of their doctor. The report, A Question of Choice, also says only 38 per cent of respondents claimed thay had ever been offered a choice of medicines. The survey revealed differences in the treatment of those receiving older 'typical' antipsychotic medicine, compared with those on newer 'atypical' antipsychotics or other drugs.
Although 73 per cent of respondents said their doctor had talked to them about their medicine, people on older 'typical' antipsychotics were 'significantly less likely to be talked to' than those receiving 'atypicals' or other drugs. The study showed that 'for many people, the older typical antipsychotics cause more severe side-effects, are less well tolerated and lead to more non-compliance', the report says. It concludes:
'In the treatment of psychosis, for this sample, atypical prescriptions were preferred by the majority.'
But it adds they are 'not a panacea'.
Report author and the fellowship's head of policy and campaigns Gary Hogman said the 'central point' was that people were not getting to make 'an informed choice'.
He added: 'With NICE and the Department of Health, it is an opportunity, a challenge to fill this gap of lack of information and choice and to improve outcomes for all.'
Royal College of Psychiatrists ethics committee chair Dr Martin Deahl challenged the assessors: 'Some of the people involved should try some of these drugs and see how they find them.'
David Taylor, chief pharmacist at South London and Maudsley trust, said the findings of lack of choice 'reflect my experience'.
Sainsbury Centre for Mental Health director Dr Matt Muijen said: 'The overriding theme is that people are not happy with their overall care.' There was 'a gap between what is intended in the national service framework for mental health and the NHS plan' and what people with mental health problems 'actually get'.
A NICE spokesperson said: 'Every time we do a technical appraisal we invite the relevant drug manufacturer, royal college, professional and patients' groups to submit their views and evidence. All of which is taken on board as part of the appraisal process.'