Mental health: ethnic minority experiences

Not taking prescribed medication

People thinking about stopping their medication should always discuss their plans with their doctor first. Stopping medication can cause unwanted effects and most should be reduced gradually. The Rethink Mental illness website provides useful guidance for people considering stopping their medication.

Although many people we talked to were taking some form of medication, some people currently were not taking any or talked about occasions when they had stopped taking it in the past for a period of time. Others did not stop taking their medication altogether but took it only when they felt they needed it - against the advice of their doctor and contrary to the instructions. 

Consequences of stopping medication

Most people became unwell within weeks when they stopped taking their medication. It was precisely for this reason that some people said they would not stop taking their medication, despite any side effects.

Some thought it was difficult to reduce or stop taking medication, especially if you have ongoing problems in your life or no support, and side effects can occur. 

Some people talked about putting support measures in place to help them reduce or stop their medication. One man used prayer and fasting to help him reduce his medication and a woman relied on the support of friends with experience of taking medication for mental health problems.

Doctors often encouraged people who did not take their medication to take it and told them that they needed it. Sometimes stopping medication and becoming unwell meant being admitted to hospital or given treatment against their wishes or without them knowing under the Bournewood gap - a gap in the law that allows mental health inpatients lacking capacity to make decisions or consent to treatment to be given hospital treatment informally, without the need to section them under the Mental Health Act. To stop the abuse of this gap in the law the government introduced the ‘Deprivation of Liberty Safeguards’, which came into force in April 2009. A mechanism by which people can challenge the compulsory detention of people who are unable to speak for themselves. Unfortunately many families still don't know the safeguards exist, and as a result despite the large numbers of people detained informally very few have been challenged.

Some people who had been labelled as “non-compliant” by doctors were given medication by injection. Some found being injected highly distressing and humiliating. One man, however, did not mind. Another man said he noticed when he was in hospital that injections were used mainly for people of African-Caribbean origin. He also thought that being injected in the buttock had sexual overtones that might be particularly traumatic for people like him who had been victims of rape. 

Reasons for wanting to stop medication

Reasons for not wanting to take medication varied: people often felt it was not helping them (or not helping enough) or that they did not need it. Some stopped taking it to control a situation in which they felt they were controlled both by their mental health problems, the medication or their doctors. Others said that they had rejected medication at some point in the past because they were unwell at the time. 

Concern about unpleasant side effects was another reason for wanting to stop medication. People also worried about potential risks to their brain and memory and the risk of becoming addicted and were reluctant to take medication long-term or for the rest of their lives. Some also objected to the influence pharmaceutical companies have in the mental health system and their use of animal testing. One man said he stopped taking his medication when he was drinking alcohol and taking drugs because he thought that would affect the way the medication worked (see Chapman above).

People who were no longer taking any prescribed medication gave additional reasons. They were motivated to give up their medication by the idea that it masked their real problems and not taking it would help them to understand what was causing their mental health problems and find other ways to deal with them. One man had found medication helpful in the past but felt he could manage without it. He compared tablets with a defibrillator (an electrical device used to restore a normal heartbeat), saying that they were a temporary fix that does not solve your problems but just bring you back to life. One woman said she thought “communication is the best medication.” A few people said that they had been misdiagnosed and wanted to stop taking the antipsychotics that had therefore been wrongly prescribed (see 'Getting a diagnosis'). 

Having medication stopped by a doctor

Other people described how their doctor stopped or changed their medication, or reduced the dose - sometimes without explaining why. One woman was rationing her remaining supply of medication because her doctor had refused to give her any more. One man hoped that he would eventually find a treatment that worked after his doctors discharged him against his wishes.

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Coming to terms with taking medication

Over time, many who had rejected medication at some point said they eventually came to terms with their mental health problems and realised that they needed to take it. Others thought side effects were “a small price to pay” and found other ways to take control of their situation, for example, by developing strategies to manage side effects (see 'Prescribed medication & side effects', 'Complementary and Alternative Medicine' and 'The role of faith, religion & spirituality'). 

Last reviewed September 2018.
Last updated June 2015.


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