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Mental health: ethnic minority carers’ experiences

Becoming a mental health carer

What is a 'carer'?
A carer is someone who provides unpaid help and support to a family member or relative, partner, friend or neighbour who needs help because of their age, physical or mental illness, addiction or disability. Families and friends have always helped each other in this way, but in the last couple of decades, services have started to use the word 'carer' to refer to the person who gives such help.

The contribution carers make is now part of the government's policies. Carers save the government an enormous amount of money by doing what they do. In return, many carers can claim a Carer's Allowance, and most carers have the right to a needs assessment to see if they need any other support, such as proper respite or holiday (see 'Carer's assessment'). There are several laws about carers' rights and how they should be supported. But many carer organisations think carers need more help, and the people we interviewed agreed.

Caring for someone with a mental health problem can be particularly challenging for many reasons such as:

  • Difficult behaviour or changes in the unwell person 
  • Finding support that suits carers and the person cared for 
  • The attitude others have to mental health
  • Information sharing with professionals because of patient confidentiality
  • Being a carer and from a minority ethnic community can mean people face discrimination or have difficulty in getting their cultural needs met.

This page explains what it was like when people first began caring for someone.

'I didn't know I was a carer'
Many languages have no word for 'carer' the way it is used in the UK. Many of the carers said that at first they didn't know what being a carer meant, or they didn't think of themselves as carers. Some had only come across the word 'carer' once they got in touch with services, and for some that had taken many years - even up to 20 years. 

It had helped some to be told that they were a carer and could access support and services.

 

Aiko was helped by a support worker and searched the internet to understand what 'carer' meant.

Aiko was helped by a support worker and searched the internet to understand what 'carer' meant.

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Well when that, when first the time I heard the name, "oh Aiko, you are a carer", first time I actually looked into dictionary what that really means, although I could imagine what that means, I didn't, my, just to, I didn't register the actual situation in this country, 'carer', what really it means to people. And also I didn't think mental health issues, it would be so, how can I say? -A huge problem for people. But on the other hand it's been recognised and there is a treatment, and the support, but all the things I had no idea I could get. But because Jim was out of work, and he wasn't, wasn't able to go to work, we had to claim for benefit, but that was really chaotic. And the local, sort of a benefit support agent, one of their advisors said, Aiko you are a carer because your husband is receiving benefit, and he's got a psychiatrist, he's waiting for treatment, so that means you are the carer, you are looking after him. Yeah, and then I then started looking for some support for myself. I think the advisor gave me some information, which related to this carer's support service. And then I made contact a few month later. And things sort of started opening a lot clearer. And then I made lots of questions but also I didn't know what to ask still what 'carers' means. It's, 'carer' is one word but then it has got so much different meanings, and individuals has got different lifestyles, and circumstances, and diagnoses are different. I was still confused actually after I was said you, “Aiko, you're a carer”, I was really confused again even more. I think I was doing a lot of research by myself. Luckily we had a computer always at home, just keep typing and research.

Knowing how to care for people with mental health problems
People said there was a lack of information and preparation for becoming a mental health carer. Before becoming a carer, many had known little about mental illness. Some had 'wrong perceptions' about mental health problems, for instance thinking people could just 'pull themselves together' if they wanted. 

 

Jane felt distressed and had no knowledge of schizophrenia when her daughter was first diagnosed ...

Jane felt distressed and had no knowledge of schizophrenia when her daughter was first diagnosed ...

Age at interview: 69
Sex: Female
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Now by this time I had no clue, we had no clue what this is all about. We had no idea what it is all about. So we started to get this, you know, so when I thought, 'Schizophrenia, what is it?' So, anyway he says, 'She's got mental illness'. Ooh I'm telling you, I'm not joking, I felt, because in my mind, a mental illness, because we didn't have no experience of what mental-. In those times, in my mind I was thinking, 'Mental illness, oh my God, I'm going to see her pulling her hair out, ripping everything', you know that's the idea I get of something like that, I call it 'mad', put it that way, 'Oh my God I'm going to see all these things happening, she'll be pulling her hair out, doing this, doing that'. Anyway, I'm telling you, when he told me that I felt as if somebody had just ripped my heart out, that's how I felt and when I left the hospital I came home and I went up to my room and I cried and I cried and I cried. And I just couldn't, I couldn't, I couldn't take it. I thought only one daughter, you know, she's only one daughter, I couldn't take it, I couldn't take it all. And by the time I had to go to work, you see, we used to be, me and my husband we both go to work.

 

Kiran did not know about depression and didn't know where to look for help other than medicine ...

Kiran did not know about depression and didn't know where to look for help other than medicine ...

Age at interview: 55
Sex: Male
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We did not get any help from anywhere at the time.

Where did you hope to get help from?

We did not know, we did not have hope that we will get help not heard anything about depression. Not heard anything about depression or epileptic not heard anything. No help and we had not heard about this at all. All we did was go to the doctor and doctor writes us prescription and we come back home and back again. That's all.

So afterwards?

So after these specialists came and we were sent to them and brain scans were done. They told us that these epileptic fits are happening due to depression. Then they sent us to a psychologist and then we got to know a lot more. Five years later we got to know that this is due to depression.

People complained that doctors, nurses or other people working in services had not given them much information. Some said what they got was 'too little too late', others said they had to 'go out and get it' themselves. In the end, people found helpful information in books, on the internet, via carers' groups or community centres.

Some carers pointed out the dangers of leaving the care of people with serious mental health problems to carers unless they were given the information and training they needed. One woman had told health professionals that 'you are trained in this and I am not', but still didn't get the information she needed to care. People commented that 'if you have a broken leg, no one would expect an untrained person to treat you.' Yet carers we spoke to felt they were given lots of responsibility with no other option than to 'pick it up as you go along'.

 

Nick was unprepared for looking after his son when he was released to his care.

Nick was unprepared for looking after his son when he was released to his care.

Age at interview: 74
Sex: Male
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Maybe about ten days afterwards, in the hospital, there was a locum psychiatrist who was himself back from a stay in hospital for depression. He says, there was a little argument between him and the registrar and the registrar said you can't release him. 'Oh I'll take the responsibility', because my son had earlier worked on this man to come home. And he said all right I'll go and stay with my Dad, it's' so he just called me and said I'm releasing your son in your care. Didn't call me to one side, give me five minutes and tell me what is involved or what is not involved. Did not ask me whether I am prepared to do it or that I can handle this patient at home. Nothing of that sort, just you know. And then the registrar lady told him that he had, the pills that were given to him were under his pillow, he wasn't taking the pills. He was suspecting all of these people inside the ward of being' conspiring against him.

So he didn't want to take the medication?

Exactly, so that is why the registrar said he's not right to go home. So knowing all these things, clinician to discharge a patient in my care who are completely oblivious to any mental illnesses or what it involves, that's the type of people you have. You see, they were going by the book. What I'm saying is, most people in this business, if they use their common sense, even about confidentiality, use the common sense, what is a carer? A carer has to look after this patient. That means that they do the same things or more, than what a nurse did in a ward, but at home. Now there is no training for these people -at least a little bit of advice, or a gentle, you know, make them aware of what his mental illness is, that he could become violent. Now later on the violence also came in but we were not warned of that.

Several people had not known what to look out for, what to expect or how to address difficult situations when they arose. Others said they initially had not known how important it is for people with a mental health problem to stick to their medication. Others said they had not been informed about their powers as next of kin to stop some involuntary treatments. Still others felt information about benefits would have helped because they struggled financially.

Support services for new carers
Some carers said they had felt distressed and confused and said they'd had 'the confidence knocked out of me' when they first began caring. Many emphasised that having someone to talk to may be especially important for new carers, but said that at first they had not known where they could go for support.

If people don't see themselves as carers they probably will not look for carers' support services either. In many cases it had taken years before carers realised such services existed for carers and families affected by mental illness. Eventually, many got great support from a range of services (see 'Support from carer services'). 

 

Jane had been a carer for many years before her doctor told her about a centre which had services...

Jane had been a carer for many years before her doctor told her about a centre which had services...

Age at interview: 69
Sex: Female
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What, the same doctor that introduced us to a carer centre, because I wasn't going to no carer centre, at that time was a doctor attending and she said, 'Oh do you know about', she said, 'Do you know about, what you call it, as a carer centre for carers', so I said and for users as well. So I said, 'No, I don't know anything about it, I've never heard of that place'. It was the doctor attending that mentioned it to me. Anyway I went, I went to see where the place were and then I started going there. She was going as a user and I was going as a carer and that's the first time that we started to get a little bit of information about, you know, different things and. But before we were so much in the dark about this mental illness, I'm not joking, we were so much in the dark about it and you didn't have, you didn't really have anybody to tell you anything in them times. You didn't have no one who could tell you anything, explain to you about much, not really. Not like now.

Some hadn't known where to turn for help. Others had felt dismissed by the health service and so had not looked for any further support. 

 

Sarah says the professionals must have known how hard it was to look after her son, but offered...

Sarah says the professionals must have known how hard it was to look after her son, but offered...

Age at interview: 59
Sex: Female
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On top of that, because I was at work most of the time she came, so I felt it was quite slow, I mean I expected much more, much more help, you know, And I really, I was never, even though Max was with me at home and they must have known, I know they are overworked and so on, but they must have known it's quite hard to have somebody who is not well at home. I was never asked, you know, how I felt and if I was OK, it was a matter of course that I was going to be OK. And you don't feel like saying, you know, it's difficult to cope with, because you feel, well, you've got to, and you feel if you are not coping it means you are not adequate, because people are not offering anything, so it means that you should cope, really, so you get into that state of mind. And so anyway, I'd got to know about Rethink, and I don't know who told me and I can only imagine it must have been either the psychiatrist or the CPN otherwise I would never have known about them. So I contacted someone and I used to go to a monthly meeting in the evening, which was quite useful, and. But then I still didn't know much about schizophrenia, and really where I learnt everything I know now is on the internet. There is a very good website, schizophrenia.com, and I just went, and then when you go to different websites and I just learnt, you know, I didn't know there were several types of schizophrenias, I thought everybody with schizophrenia was, you know, the same, had the symptoms, so it was really time to, I mean, to understand what was happening to him, because obviously he had no insight of his illness at that time. So it was trying to make sense of, and what to do to move forward, basically.

So I got involved with Rethink and then somehow I must have heard, been told I was entitled to a carers assessment, and which I had, and I didn't find it very useful because what he suggested was for Max to go somewhere, like for people with mental health problems for a week, to give me a break, and I had said, had told him Max was not going to go anywhere because he didn't want to have anything to do with people with mental health problems, as he was adamant that he was not mentally ill. So basically that was it. Either my son had to fit in what was offered, or there was nothing.

Some had been helped by voluntary organisations; one woman said a health professional had told her about a voluntary organisation, 'otherwise I never would have known about it'.

For some, their greatest need had initially been getting support in their own language. One woman who didn't speak English and who didn't read or write said it had been almost impossible for her to understand the system because 'being illiterate is like being blind', and 'you don't know anything if no one is there to help'. Many people said that when new to both caring and to mental health issues, 'you don't know where to begin' to find help.


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Last reviewed September 2018.

Last updated February 2013.

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