Mind releases latest drugs report: Coping with coming off exposes serious difficulties in doctor-patient relationship
Posted Thursday 8 September 2005
"Next time I won't go to the doctor, I'll go down to Waterstones."
"I found his (my psychiatrist's) attitude extremely depressing. He never gave me any grounds for hope of optimism (of coming off successfully)."
Today mental health charity Mind releases its groundbreaking new findings from the Coping with coming off report about the experience of coming off psychiatric drugs, revealing serious problems in the doctor-patient relationship.
Of patients interviewed, 40 per cent saw their GPs as "not helpful" in the process, making them the least helpful source of advice and support, with 10 per cent stating that GPs "made things worse". Internet and email groups came out top - 94 per cent found them helpful. Doctors were also unable to predict who could come off successfully - those who came off against doctors' advice/didn't inform doctors were more likely to succeed: 53 per cent, compared to 44 per cent of those whose doctors agreed they should come off.
Following recent awareness of lack of information on harmful side-effects of drugs such as Seroxat and Vioxx, the report delivers insight into traumatic experiences of harsh withdrawal symptoms, and the worrying lack of support in trying to come off medication, despite the benefit, need and/or desire for some people to come off.
Sixty eight per cent experienced problems in coming off SSRIs, 60 per cent psychiatric drugs in general. Of grave concern is the lack of patient choice in taking drugs. Interviewees were able to give more than one answer, reflecting different experiences on different occasions: 30 per cent had been compelled (under Mental Health Act), 52 per cent had felt under threat of compulsion, and 70 per cent had felt pressured to take drugs.
On antidepressant issues such as addiction and links with suicide rates, and some drug companies' apparent 'profit before patient' approach, Mind has been campaigning for some years.
In 2004, there were 29 million prescriptions for antidepressants in England, of which some 18.5 million were SSRIs and related drugs (a rise from 8.2 million SSRIs/related in 1999). Recent Norwegian analysis showed a clear link between Seroxat and significantly higher rates of suicide attempts.
Concerns are widespread - in April 2005, a significant negative correlation between antidepressant prescription and national suicide rates was reported from Sweden, Denmark, Finland and Norway, and the US Food and Drug Administration is continuously monitoring antidepressants' links to worsening depression or suicidal behaviour. On 26-28 September, drug consumers from across the US and Canada will join forces to protest at GlaxoSmithKline HQ (Philadelphia) over Paxil (US name for Seroxat) - 5,000 US citizens have filed lawsuits against GSK over lack of warning about Paxil's addictive nature and withdrawal symptoms.
But last week the Government rejected Health Committee recommendations for independent publication of full clinical trial data, despite proof that the MHRA has been far too slow to act on information affecting consumers in the past. Hesitation that may have cost lives. Last year, Mind Chief Executive Richard Brook resigned from the MHRA expert group over its failure to protect patients from unsafe dosage levels of Seroxat, fearing the influence of large drugs companies. The Norwegian survey was based on clinical data previously available to drugs regulators.
The research process
There were two phases, developed and carried out by service user/survivor consultants. In the first, 204 people were interviewed over the phone using a questionnaire. This was followed up by interviews with 45 of those, exploring their experience in more depth, and being asked to gauge how helpful different kinds of people, resources or activities were.
There were positive comments about mental health professionals - showing the helpful effect of professional guidance. As doctors prescribe psychiatric drugs, it is reasonable to expect them to be the best source of advice and support about coming off them. These results will be used to produce information for service users, good practice guidelines for mental health professionals, and policy recommendations.
Alison Cobb, Mind Policy Officer and Coping with coming off Project Manager, said:
"This study shows that it is vital for doctors to listen to their patients, and so have a better understanding of patients' perspectives of their medication, and of the difficulties of coming off.
People who want to come off their drugs must have their decision respected, and be practically supported even by professionals who may not agree with them. When the GP-patient relationship works, it works well, but there are clear limitations of relying on medical help, and value in a much wider range of resources. There is also an urgent responsibility for doctors to be provided with the fullest information on the drugs that they prescribe, from the MHRA and other sources.
"Mind's hope is that this research will be informative for professionals as much as service users and that we can work with the professions to make medication choices a reality for people taking psychiatric drugs."