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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.

 

Ugo describes the side effects from her medication but says she would not stop taking it because...

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Age at interview: 38
Sex: Female
Age at diagnosis: 31
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Okay, do you experience any side effects from the medication at all?

Yeah dry mouth and the shakes.

And how is that?

It's alright, I just drink a lot and try and not hold hot drinks.

Okay but it doesn't ever make you want to not take the medication?

No.

No?

No because I stop taking my medication and I know I become unwell really quick so [Laughs a little] I don't want to go back to being unwell so I try and not stop taking me medication.

How, how quickly does that happen?

Six weeks'

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. 

 

Ataur describes the side effects he experienced when he reduced his dose of medication and what...

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Age at interview: 60
Sex: Male
Age at diagnosis: 17
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You see those four, I used to take 40mg depression tablet when I cut down I talked to my doctor, he said, 'Alright try.' Because I take half, I, I cut it down half in a straight away, three weeks is so much problem in the head, it's sometime I feel somebody hitting the head, although there is nobody in here. Just jumping [jumps] on top, pushing, [gestures with hand] somebody pushing through the head like this. And I said, 'What happened?' [Looks around, rubs head and laughs]. So I, so now is okay, the doctor said two weeks it disturb you a little bit. Because the reaction from your blood have to be resettled, it will take three weeks, it's okay now. When I going to cut it down another 10mg it will be doing the same thing so now I'm, I'm used to it, I've got the experience so I won't be worrying. Before I was worried [Pause] So this is, this is the way I'm running my life, and I'm over 60, I'm okay, I'm happy now. But from, but I have to take the tablets. I think the tablet is controlling me. I rely on the tablet and very much I wanted to give up the tablet but [shakes head] I'll get ill if I do. I'll start crying, it's happened many times, I get nervous and worried, worried, worried, for nothing! I know it's for nothing but it's come to me, what can I do? Sometimes I get angry as well but I hold it back.

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.

 

Dolly describes her reasons for wanting to stop taking her medication and the importance of...

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Age at interview: 36
Sex: Female
Age at diagnosis: 21
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I mean, there are kind of a couple of times I have wanted to stop taking medication, because even though it helped with the kind of negative symptoms, you know, I was just going to bed at a silly time, like 8 pm and waking up like 8 or 9 and it just felt I didn't have the energy to do stuff I wanted. And also kind of, the kind of political aspects, you know, of how the pharmaceutical companies have some much power within the mental health system. And that I didn't want to be part of it and also knowing that a lot of the pharmaceutical companies test on animals which I'm not comfortable with. So for those reasons I have tried to stop taking it before, but it usually just ends up me becoming very ill very quickly. 

Hopefully in the future I would like to be off my medication but I realise what my mistake was before. It wasn't having a kind of strong supportive structure that was there if I did become unwell, and how I would kind of deal with stressful, stressful situations. But that's, I think something for the future, not right now. Because I'm kind of starting university as a mature student in September. You know, I don't want to get ill, so I'm going to stay with it, at least through my kind of university time, and maybe after that, kind of try and find a way of coming off it.

So just to make sure that I understand because earlier you were talking about medication not being like a cure as such.

Yes

And so when you are talking about may be in the future being able to come off your medication is that because you see yourself recovering or is that because you see yourself finding a way to manage without medication?

Yes, just to manage without medication, you know. I have come to the point I don't think I am every going to be rid of these symptoms, because I've just had them so long. So it's finding like other ways to manage the symptoms, that's, you know, what I'm kind of investigating and kind of slowly building up a supportive structure around me really. So, you know, when I do hopefully come off them, I've got something that will, you know, will keep me standing really.

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.

 

The language barrier meant she and the doctors did not understand each other and she was forced...

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Age at interview: 60
Sex: Female
Age at diagnosis: 40
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I think because of the language barrier, communication was nearly impossible. My experience of Chinese medicine/treatment, doctors would examine carefully through sight, odour, question and autopsy. But during my treatment here, the doctors just tell me to do counting exercises, which at the time my mind could not mentally manage. The doctors then prescribed medication for me straight after. I wondered how the doctors could prescribe drugs at such an early stage. Shouldn't you ask me about my history and situation, before giving medication?  I constantly worried about my medication; what type of drugs are these? Why won't the doctors tell me? Because I don't understand English and because the doctor told me that I have to take medication, adding with the strange environment, I felt a bit worried and scared. I did not want to take the medication. I tried my best to communicate that I would like to have interpretation. They didn't understand very well, but brought along a nurse who knew a bit Chinese. She asked me to open my mouth and swallow the medication. I felt like I was forced to do something I didn't want to. She then asked me to open my mouth to check whether I swallowed the pill or not. I did not approve of this method, but there was nothing I could do, so I had no choice but I take the pills. I later realized thought that it could have been a tranquilizer or sleeping pills that I had been given, although I didn't sleep at all that night.

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. 

 

Niabingi was injected because she stopped taking her medication and says she felt undignified,...

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Age at interview: 42
Sex: Female
Age at diagnosis: 25
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Well, I've been on, yeah I've been on Depixol, I've been on risperidone, I've been on Sulpiride, I've been on oh what's the other one, Depixol, Sulpiride, risperidone, clorpromazine I think, I think chlorpromazine, I've been on quite a few. injections and I mean 'cause I was always non-compliant because you know, I was convinced I could get by without the medication they called me non-compliant because I used to stop taking it. So at first they insisted that I had the injection, I had to come in for the injection but then I'd promised them that I would take it you know, because the injection, I find injections so undignified you've got to go in and take down your pants or you know, and everybody seeing your privates and you know, not everybody but even just the one nurse is too much for me you know, and all that kind of thing. And sit there like a, a, a, a, a passive, a passive animal and just you know, have somebody, somebody inject you like an orange and I just, I really felt very upset with the injections, very undignified and belittled that I felt with the injections so I promised them I'd take the medication, you know, the oral medication. [Rubbing hands together] So that, that's , that, you know, they, you know they, eventually they agreed that you know, that you know, to give it to me. And you know, I've been on that for a while now, for a good few years, a good few years. 

 and I've also had a stable mental health team, you know, I've only just lost my CPN, I think it's been, how long has it been now'? It's been about three or four years that I haven't had a CPN but my social worker and psychiatrist, my shrink have been with me coming up to ten years so they know me now you know. And if I say to them well I don't feel like taking the medication you know, they'll say well you know, you should, you really should but you know, you know, you know, we can't force you but you know, you could get ill or you'll go into hospital, you know, you will go into hospital. But I mean they don't sort of insist you know, it's, it's, it's you know, they don't, they, I mean now they don't call me non-compliant, they just understand, they just, they understand that I've been trying, you know, because for me to get back to normal, to really get back to normal, because what used to sort of upset me was that people would say you were well you know, but you'd still be taking these, these drugs, these drugs, these tablets or you these, or having this injection and people who are well don't take tablets and drugs so I'd say well how well am I? So what I tried to do was to get by without the medication' [Begins to cry] So because that would signify that I was properly well, so I think they understood after a while that I was just trying to get a bit better [Crying].

 
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Chapman stopped taking his medication in case the weed and alcohol he was using affected them and...

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Age at interview: 23
Sex: Male
Age at diagnosis: 20
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Do you know the name of the medication that you're taking then?

Consta risperidone 50mgs.

Right and do you take that 50mgs?

Fortnight.

OK is that, you take a, have an injection or something? Is it a depo?

A depo yeah.

What's that like having that injection?

It doesn't make a difference.

No? Do you mind going for the injection?

I don't mind.

No?

No, exactly. 

Would you rather have tablets or'?

If, I have been on tablets but I, got so bad that I wasn't taking them, I'd piled them, stashed up, I used to get it delivered at home so my social worker said that I should start getting an injection, that that would be easier because I wasn't taking my medication. My medication as well wasn't, I don't think it was making a difference.

Why weren't, why weren't you taking it because'?

I was drinking so I thought if I was drinking it would, it would affect the way the medication would work. And I was taking drugs as well.

Right, what kind of drugs?

No just weed.

Yeah okay. Did that help or'?

It makes me even more paranoid. Makes me even more paranoid when I smoke weed.

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. 

 
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Lorenz thought he did not need his prescribed medication and believed that the doctors were just...

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Age at interview: 50
Sex: Male
Age at diagnosis: 20
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I thought I'm ill. they say they're psychiatrists, know about the mind which I think my mind was disturbed or my mind got an illness and so I can only put it down as an illness in the mind. It's not that, it's like a physical illness but a mind illness. So I said they have the drugs to help me to recover so I was relying on them, which I probably shouldn't have, relying on them to get me the right medication. But what I noticed they was, to a degree they was doing they had, they wanted control of me to say because I have a mental illness, I probably might do certain things. They have, a conception, perception of me which wasn't quite right. I didn't want them to perceive what I'm like before I show some sign of doing it, you know. So I felt that medication, the only type of medication throughout the years they were giving me was to say keep me under control rather than saying '[Lorenz], you're, you're being treated only for this illness.' It's a controlling mechanism because I said this because I need to go to the hospital regularly to get injections or I need to have fortnightly check up with the psychiatrist, one or the other, it's either a fortnightly check up with the psychiatrist or monthly with the injection, for many years it was like that. And I just thought this isn't right, nothing I can do. They tell me the medication is right to get me better but maybe this is where I should have said it was my colour [laughs] but I, as I said I never thought there was a colour problem, it was just that it's a controlling system.

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'). 

 

Sara says taking antidepressant would imply that her depression was caused by a chemical...

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Age at interview: 31
Sex: Female
Age at diagnosis: 17
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And yes, something I did want to say was that, I like, have looked on the website and I have seen some people saying that they felt relieved to take medication because it felt like someone was saying it's not your fault, and you have got a chemical imbalance and for me, I actually think, if someone said that to me it would negate all my experiences that led to me becoming so depressed, if they just said, 'Oh well you well you've just got a chemical imbalance in your brain and'' 

I mean I can see the point why people might think that, you know, if they're told they have got a chemical imbalance that makes them feel it's not their fault and it is a real illness. But for me for somebody to tell me that and say, 'Oh just take an antidepressant.' I feel quite angry about that, because I think that, in a way I think I'm justified in being depressed I suppose. I think well, and I know that there's a lot of people who do have terrible lives and they don't get depressed and maybe I am not, I don't know, maybe there is some brain chemical imbalance but I just think. And I'm not really very good at explaining my experiences in a way that could make people understand why I would be so depressed. I think it's like only if you have lived through it, that you might understand. But I sort of think well, no wonder I'm depressed.

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.

 

Anton takes no medication - he felt the doctors gave up on him.

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Age at interview: 64
Sex: Male
Age at diagnosis: 45
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So nothing came out of them, and then one of the psychiatrists sort of said to me. 'Look, well you don't seem to respond to medicine. So therefore we can't do much about it. And therefore, as far as we're concerned we have given up. You will just have to grin and bear it.' 

Now me being me, I never take no for an answer. My being an auditor when the company has problems, well I want to solve it and come up with something. And if I didn't I would go and ask somebody. So, so I said, 'I want to see some other consultants'. 

So went and saw another, one of their consultants, and the consultant first he treated me nicely. He didn't prescribe any medicine. I am a member of the Depression Alliance and Manic Depression Fellowship. I get their monthly magazine, and various information. 

When some new treatment came up. I used to go and say, 'Doctor, there is a new thing. Well let's try this.' Then he said to me, 'Well look, we have discussed all these things before. Medicines don't work for you.' And then he said, 'Oh I know about all that. You know, I'm a consultant. You know, you're just wasting our time. And that is our business.'

You said that they had given up on you.

Oh they've given up even when I go and show the latest research or pill, or development, they say, 'Oh we have discussed all that.' Well then they quote statistics. There are 20% of the depressed, people suffering from depression, medication doesn't work. Then I said, 'Well I could, this may work, one in a million chance.' But they just wouldn't.

How does that make you feel?

Oh I feel very bad, though. Because they, I am not asking them for something, for, I am suffering, when you're suffering, even if they tell me, gulp that stone which I will do it. You know, when you're suffering, somebody is suffering, why don't they do it? All they do is write another prescription and say, 'How are you getting on, you know.' 

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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