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Mental health: ethnic minority carers’ experiences

Carers' views on treatment and cure

Mental health problems are most commonly treated with medicines. 'Talking therapies' such as psychotherapy or counselling also help, but these therapies are sometimes difficult to access in the NHS. Some professionals believe a combination of medication and talking therapies has best results. Some people with severe mental health problems are given electroconvulsive therapy (ECT, where electricity is passed through the brain). For more about ECT see our website on 'Electroconculsive Treatments'.

Other treatments can also help people manage their condition, for example relaxation techniques, exercise and cognitive behavioural therapy. (For more information about how to treat or manage mental health problems, see our websites on 'Mental health: ethnic minority experiences' and 'Depression').

Carers' views about psychiatric medication

Most carers agreed that psychiatric medication is essential for people with severe mental health problems. They said that 'wives, girlfriends and partners only can do so much, and the medicine can do the rest'. 

Many talked about how medication helped their relative to control their condition. Some people with mental health problems had tried lots of different medicines before they found one that 'worked for them' and that could be a matter of trial and error, which can be frustrating.

 

Her daughter is better after finally finding a medicine that works for her (played by an actor).

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Age at interview: 69
Sex: Female
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So anyway it went on and went on until eventually again -they keep changing the tablets now, they keep changing the medication to find out which one suits her best, that's what they did. And the doctor told us after a while, he said they have to change them, you have to do them until you find the best one that suits her. Anyway they did this and until they come to one that really was not too bad and we continually used that one and then after a while we're back at the doctor again and asked for the medication to be changed again. You see, because we thought, well we want something, better medication so that she can live a really normal life, you see. So we go to the doctor and we explain to him and then eventually they put her on this one and it's been a good one, it's been a good medication, you know, it's been quite good with her, she's a lot better now than what she was then, a lot better.

Many said the unwell person could be their 'own enemy' because they did not want to take the medicine (especially when feeling well), or because they also took illegal drugs or drank alcohol which reduced the positive effects of the medicine. 

Despite thinking medication can be very important, some carers said it can sometimes be 'too easy to prescribe medication.' Some felt people with mental health issues were 'kept at bay with sedatives' or given an unnecessary 'cocktail of drugs' and that some doctors should review their prescription practices. People also thought that 'tablets take away the symptoms but the problems will still be there'. Some felt that people in minority ethnic communities are more likely than others to be given psychiatric medication.

Some were concerned that while medication seemed to work for their relative, they also had side effects that were hard to live with. People talked about severe constipation, drowsiness, their relative becoming like 'zombies', or experiencing nightmares and weight gain. Some had become very passive and unable to do things for themselves. One carer said his son had become psychotic when he used two different medicines in combination.

 

His son got difficult side effects from his medicines.

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Age at interview: 74
Sex: Male
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Fortunately for us the web sites came in now. There's a mine field, they've got stacks and stacks of information that you can read. You can even tell the clinicians I have read this. I have had certain occasions when I have had to take out print outs from the web sites and send it to them. Look these are the side effects. Because my son, he was on clozapine, which is the best medication they say for schizophrenia, and the side effects were so bad that he used to block the toilet every time he went, which was once a week, or two. It was so bad and he was using Vaseline and things. I said, what, - he was on a vegan diet, I said, 'you are not eating the right thing, they need to-' 'You don't know what you're talking about Dad'. If he had told me that he was having constipation problems, I would have told the doctors. But if you don't tell them they don't know. This is what I'm saying. So once I went to unblock the toilet, I thought this was bits of stone in it, black stone. It was that colour. And finally, they cut it down and they had to change the medication and this and that. But now he's back on it again, because that is the only medication that really works for him. There are other things that they're going to give to counteract the side effects of this. And then he salivates quite a bit as well and saliva, that's another side effect. So I remember that consultant psychiatrist told me that he knew of one patient who had to have surgery on his stomach because the constipation was so severe. So you see what these people go through with medication.

 
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Tina thinks people need regular checks if they suffer bad side effects from psychiatric medicines...

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Age at interview: 59
Sex: Female
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The patient has to have a regular check up for the body like a blood test, any routine check up, that they don't have any more kind of disease like the liver disease or any infection in their body. So sugar level, blood level, they should check it regularly like a, -not every month, but at least three months or six months, they should do that.

To make sure that the general health...

The general health is keeping well. 

Why do you think that is particularly important?

Because when they see the side effect, like the put on weight, tiredness means, -with their medication at certain time their body is not coming on -back up, so they should have the check up that so they don't get any illness, what they are suffering from and with the side effect, so they should check up the blood etc.

Some said that carers should be told of possible side effects so they can help the person who is unwell and inform doctors.

Views about psychotherapy and 'talking cures'

Carers were concerned that overall, the treatment offered to people with mental health problems is too focused on medication. People said that more psychotherapy or counselling was needed. Some said that 'just giving tablets is not helping' and that it is necessary to talk to people and 'work with their emotions', taking into account their background, 'who he is and what he has lost'.

 

Nita says that to be able to treat mental health problems, you need to enable people to talk and...

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Age at interview: 46
Sex: Female
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Mental health is a state of one's being, whether it's mentally or physically that comes about because somebody hasn't got the full set of faculties or factors that can make them whole. And it can be, it can be like minor pockets of stress that cause somebody something, or it could be minor pockets of depression. Or it can be, you know, a complete chemical imbalance, where people are having paranoid thoughts. But there isn't a state of wholeness, and thinking is, thinking is jagged or whatever. But, I mean, like to somebody who has mental health problems they don't see that. I know that when my mum was experiencing mental health problems that was her reality, that was her truth, so it's just about perceptions. And, -but it's difficult when you've not been through it, or to understand it to not be judgemental.

Yeah?

And what I've experienced in working with other carers is all these factors, guilt, responsibility, judgements, you know. A lot of the carers who I've worked with have said, 'oh he's doing it on purpose, she's doing it on purpose'. And it's like making them understand that most people don't do things on purpose, it's really meaningful for them, you know, that's how they see that, that's how they see the world at that point. Because I know my mum would never, never do anything to hurt anybody. So, -and maybe as a society we're not so tolerant, you know, we have lots of medical models where somebody's like slightly ill, but we'll pump pills into them without looking at what's the cause of this?

How do you find the cause of it do you think?

By talking to people, or understanding their position, trying to communicate to them, and trying to, you know, like I said to you each person is individual, and gearing your, one-to-one with them. But it is so difficult finding good workers, and, you know keeping workers, and having therapeutic models and, -My mum when she had mental health problems she was sectioned, she was locked away in a ward with other people with mental health problems for six months. There were no therapeutic, they didn't do anything, no activities during the day, all they did was monitored her medication, nobody talked to her.

Some believed that services need to understand that unless people are able to talk about themselves they can't be adequately treated. Some suggested that what is needed is frequent counselling or psychotherapy in one-to-one support and 'not a five minute appointment once every three months'.

Many said that mental health problems affect a person's close relations, so it is important to involve family and friends in talking therapies. Raising awareness of mental health issues was also seen as important so that family members can identify early signs of mental health problems and get help to deal with emotional issues before people get really unwell.

Views about alternative and spiritual treatment

Carers talked about other forms of treatment which they hoped would help their relative manage their mental health problems or even recover from them.

Some said it helped their relative to do exercise like playing football or going for walks. One woman said Reiki therapy helped her aunt with Alzheimer to calm down. Another carer had arranged drama therapy to help discover the root cause of his wife's depression.

Some people had sought help and treatment from religious activities. Some believed that miracles could cure their loved one, but that it was up to higher powers to decide whether this would happen. Others said spiritual or pastoral care was useful in helping people to manage their condition and that 'prayer can give strength but not cure' mental health problems.

Some had been disappointed - they'd spent much money on religious cures that didn't work. This included special prayers in temples in the UK and abroad, or asking fortune tellers or mediums for help.

 

She sought Chinese spiritual cures for her husband's depression, but they didn't work (recording...

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Age at interview: 61
Sex: Female
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I don't have any religious belief. Our family practices Chinese ancestor worship.

So for this case, did you pray?

Of course I did. We are old fashion Chinese, we pray. When my husband first became sick, we were seeking Chinese fortune tellers, different mediums. We had spent so much money. Friends were very supportive, lent us money to seek guidance from Chinese fortune tellers as far as in China.

What was it like? Can you share it with us?

If you believe it, you believe it. If you don't believe it, you don't. You are from Hong Kong?

Yes.

You go a Chinese fortune teller to perform divination to find out what has happened to the family and requested to perform the necessary actions to counter the bad things. It was all scams. I went everywhere to seek help. When someone told me someone somewhere can help, I would go and seek that help. But all was in vain.

If all was in vain, why did you keep seeking such help?

I wasn't going to give up the hopes. It's taking chances. You wanted him to recover, he is my husband and I didn't want him to be like that for rest of his life. I wanted him to recover. When I was told such and such medicines are good, I went and bought them. When I was told which God was good, I went to pray that God. I've stopped in the last 2 years, I have no money. 

Just to buy some hopes?

Yes, it's a hope. If one is fine, of course you don't believe it. But when you have problems, if people told you that rock can save you, you'll go and worship that rock.

One woman said her brother had been cured of his mental illness by prayer and God's intervention'

 

Angela says God helped her brother get over his addiction to drugs, and so curing his illness.

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Age at interview: 42
Sex: Female
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It was through my prayers and people's prayers, you understand, it became obvious that this is not ordinary. It became so obvious I can -he who is a barrister that is doing away, his job was flourishing, he was making money, how? People were not concerned, how, how can this be happening, how? You know, people could not answer that kind of question. Until I challenge God 'if you know actually I am serving you, if you know you are the God of Israel that the people talk about, if you know I'm not serving you in vain you must do something God, you must do something'. Because now the hospital they've rejected him, everybody they've rejected, even my mother has rejected, 'Lord you must speak to this situation, you must speak to this situation' and he spoke to this situation till tomorrow. He didn't go back to marijuana and he's perfectly OK, he's doing well. So mother has no give up, the mother did not give up. My father was not supportive financially because there are other children, you understand. He was not supportive. He's not here now but he was not supportive because every family member well I know you think, it does not have cost to go back to smoking, but it was not his father's fault. There was this spirit behind it telling him to go and do it, 'go on do it, go on do it', when he does it -he goes then.

Others too believed in spiritual causes and cures, but said religion could not be a substitute for doctors. They believed that 'God works through doctors' and the health service'

 

She believes mental illness is a spiritual illness which needs treatment such as prayer and...

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Age at interview: 36
Sex: Female
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Well, as we are a spirit, -we are human being but there's a fight going on for the mind with the, you've heard of Satan and God, well it's that way, -the mind. So this is sometime when people suffer from, -because people didn't born with this sort of illness, some people, some doctors might say it come from a genetic form but it's a spiritual illness, it's the enemy try to controls your mind, it's what going on out there in the world so it's really spiritual and I see he's going to church, he is calm, the Lord is taking control of him. So I'll see him in the spiritual form. So going to church is really important, serving the Lord, living a Christian life, important. Taking care of your loved ones and yes, it might be hard but with God in the picture you have got a peace of mind because as a carer, not working and I got small amount of money for my caring role and I haven't got any help otherwise, you know, and my husband benefit I have to look after him, take him out and so on, that is very hard but I've got a peace of mind because God is in my life and he provides for me, he provides for me so I just live by faith.

Well, with God you can go through any situation with the Lord, innit, you can have one hand and it's still spiritual so with the, because I believe that doctors are here, the Lord put them here, so if a person is ill and they need a doctor help, yes, that's fine and they need God also because there's a creator and we have to acknowledge that. So on the other hand he has hope, he has hope. Hope, because human being can't save us from what is going on in this world. So spiritually he's on one hand and the other hand, that is why he can take his medication because before he wouldn't want to take his medication but along going to church and telling him that 'it's good, you need your medication', take his medication and it's more peaceful.

Do you talk to the doctor about your spirituality?

Well, no. No, because when I get to the doctor I haven't got time for that. The doctor's got to see more patient so you just go and you explain your situation and he do the best he can and that's it.

Hope

Some carers said that since it is now possible to treat some cancers that were seen as 'untreatable' until recently, they hoped new discoveries will also be made in psychiatric medicine.

 

She hopes for a breakthrough in medicine which can help her son live a better life (played by an...

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Age at interview: 59
Sex: Female
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So I think, because in a way there's this thing I just think, it's hope, you need hope, you have to hope. And I am very, even though sometimes it makes me quite depressed because I think probably it won't be for him, for his generation, but in a way I am hopeful, and that's what keeps me going, that things are going to get better, or they are going to discover a tablet or.

A cure?

Well not even a cure, just something that people can function well with, whatever medication they take. Just to be able to function. And really even work, I don't care now, if, -all I would like for him is to have a social life, a few friends, he can have a laugh and that's all, and really that's a basic for people really, you can do without work. So, in a way, at the moment I am feeling OK, but let's say if in the next week or two he is not well, we are back to square one, and I am going down with him.

Others had little hope that their relative would be cured or recover from their mental health problems. Those caring for someone with dementia said that with this illness there is no prospect of improvement. Others too said their doctor had told them that 'he'll never recover'. One carer said there had been a medicine that was too expensive for her doctor to prescribe, and said 'maybe that would have helped?' Some didn't think their loved one would ever be cured, but everyone hoped that they would get stable or even get a little better.

 

She felt hope when a professor said that getting people with schizophrenia stable is not enough;...

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Age at interview: 59
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And I told you I went to that conference on schizophrenia, and that was extremely interesting, there was an American professor giving a, a talk about remission and what I came out with, of his lecture, was 'if you are told the person you care for is stable, that's not enough, that's what he said, you've got to work towards remission'. He said as well, obviously, that not everybody will achieve remission, but that's where you have to work towards and you've got sort of their criteria for the psychiatrist to follow, and I've got the impression it's something quite new, that not, -at the moment my impression is stable- that's it. He is stable, he's not in a crisis, we move on to the next one who is in a crisis.

I understand that they are overworked in the services, and when I say that, I don't want to blame them, because I understand that they are overworked, but at the same time, what they need to know is that the person who is not well has got expectations, I mean higher expectations, and so has the carer. And so it made me feel better about it really, even though I don't know how it, -because I know with my son, given the fact it's negative symptoms mostly, what he suffers from, and there is no pill for that yet, so I don't know how it's going to help him.

Many people thought that things had improved for their loved one over the years. This often happened when people found a medicine that worked better or were given beneficial support and activities. Improvements also happened when both the person who is unwell and the carer found ways to accept and better live with the condition.

 

Kiran says things are easier now the children are grown up and he has learnt to live with his...

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Age at interview: 55
Sex: Male
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So what was it like at first, in terms of your life story?

Simple, steady. There were difficulties but in everyone lives these come, that happens. It was nothing to worry about. When Mrs illness became worse and came out. If it was a medical illness then people can talk about it, but here it is mixed with medical so the difficulties got worse. But then as things happened, solutions then came, children were small and now they are bigger so the responsibilities started to lessen so now when I look back. I feel I am happier than before. Happier in the sense that I do not have to worry about money just to look after my Mrs' health. I now know what her mood is and what she will do and if she does not have money with her she will become unhappy. If we give her money then she becomes happy. It does not matter if she spends it.

When people noticed improvements, such as 'seeing glimpses of the old person' this could be a massive motivation to keep going. Others were encouraged when their relative started to be more interested in going on trips, caring about their appearance or taking part in household activities.

 
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When her husband told a joke for the first time in over a year, Anne felt really hopeful.

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Age at interview: 40
Sex: Female
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Because he used to be, have such a great sense of humour and then for, well a year, don't know if it was two years, never smiled. Now that's really weird, to never see somebody smile or even go, ha, ha, like that. Just a little laugh, let alone crack a joke or be with a friend or whatever, to be completely like a zombie, it is really weird. So the, I remember the first joke he cracked, and I'd bought some jeans from a charity shop and they, I'd managed to get them done up but they didn't, were a bit tight. And he said something like, 'Oh that's a five pound bag trying to get into a two pound bag of sugar', or something like that. It was a joke, and I just went, 'Oh wow' and gave him a big hug and said, 'You've cracked a joke'. And I was, wow and I was going, 'Did you hear what he said, he just said this'. And people I think, probably think, 'Oh that's a bit insulting' but I just thought it was fantastic because it was actually a joke. And that is the first joke he'd tried to say for a, you know, well definitely over a year. So yeah, so it's great when you get little glimpses of the old self.

When people spoke of hope some mentioned their religious beliefs; one carer believed her husband could be cured of his depression and said 'because I have faith, I have hope'.

Some people pointed out that carers bring more hope to the situation than professionals. They said they would never give up trying to help their relative to get the most out of life.


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Last reviewed September 2018.

Last updated September 2018.

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