HSP woman turned me onto a study that Mind, an organization in the UK has published. Mind has done a great amount of work in disseminating information about psychiatric drug withdrawal and continues with this important study. This is a PDF file so since I know not everyone has access to PDF files I’ve cut and pasted the introduction and summary below. See the PDF on their site for the details of the study.
An initial disclaimer made by the researchers themselves:
In the end, we received 248 forms. Although we did not have the amount of choice we had hoped for, we still ended up with a reasonably balanced group. We chose it to ensure that about half had succeeded in coming off a drug. We can make no particular claim about how typical the experiences of this group were compared with those of all people who have tried to come off psychiatric drugs….
…We wanted to find out if people had different experiences, depending on what drugs they tried to come off. When making these comparisons, we only considered people who tried to come off one drug and were on no other psychiatric drug at the time.
Hence this study lacks information for people like me who are coming off multiple drugs. Also since people were not all following careful protocols it can not be ultimately determined how many people would be successful if everyone followed a protocol as strict as mine, for example. Also the final study group was actually quite small comprising only:
• 64 people on SSRI antidepressants
• 21 people on neuroleptics
• 12 people on mood stabilisers.
Nonetheless this is an important beginning. Psychiatric drug withdrawal must be studied and knowledge about withdrawal is sorely lacking in the mental health system–to the point of being virtually non-existent. I hope other people follow suit and not only interview random people who have tried to come of drugs both successfully and not, but also study what makes people successful and how people maintain meaningful lives after withdrawal.
Now the intro and summary to the study:
Mind’s research into people’s experiences of adverse effects of taking psychiatric drugs* highlighted the lack of information and support for people wanting to stop taking medication. The research for Coping with coming off set out to find out what happens when people do try to come off psychiatric drugs: the effects of withdrawal and what helps people to succeed.
The most common reasons given for wanting to come off drugs were disliking the adverse effects of taking them and not wanting to be on them long-term.
Doctors and patients
The research highlighted significant difficulties between doctors and their patients:
• Doctors were unable to predict who could come off their psychiatric drugs successfully. People who came off their drugs against their doctor’s advice were as likely to succeed as those whose doctors agreed they should come off.
• People on mood stabilisers or neuroleptics were particularly likely to come off against their doctor’s advice or without telling their doctor. About two thirds of people on mood stabilisers and neuroleptics tried coming off
against the advice of their doctor or without telling them.
• Where doctors were involved, they were the least likely to be found helpful of any group of people. About half the people who sought or received help from a doctor found them helpful. In contrast, around nine out of ten
people who sought help or support from a counsellor or psychotherapist found them helpful, with other service users being found similarly helpful.
Of the people we interviewed, over half experienced difficulties in coming off their drugs. The most common difficulties were anxiety,difficulty sleeping and depression. Those coming off SSRIs were more likely to have difficulty coming off than people on mood stabilisers or neuroleptics.
The biggest factor in influencing success in coming off was length of time on the drug. Four out of five people who had been on the drug less than six months succeeded, compared with under half who had been on it more than five years.
When people who succeeded in coming off their medication were asked about the benefits, they most often said: better mental ability, feeling more alive, having taken back power and control, no longer experiencing the adverse effects, and feeling good about managing without the drugs.
• All people who prescribe psychiatric drugs to have training in how to support people who take them.
• More funding for services to support people through coming off psychiatric drugs.
• Learning from best practice in mental health and substance misuse organisations.
• Commissioning of user-led projects offering independent information, advice and mutual support for people on psychiatric drugs.
• Dialogue between all interest groups concerned with taking or prescribing neuroleptics and mood stabilisers.
• Further research into people’s experiences of trying to come off neuroleptics and mood stabilisers.
This research has highlighted themes that are familiar in many debates about mental health services. They include:
• service users wanting to be listened to and treated with respect
• alternatives to psychiatric drugs
• access to information
• value of peer support
• lack of credibility when you have a diagnosis
• control and coercion
• conflicting views about mental health and distress.