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Mental health: ethnic minority carers’ experiences

Support from carers' services

Carers' services 
Many voluntary, community and statutory organisations provide services which can make life easier for carers. Some carers had been recommended to use these kinds of services by health professionals, counsellors, or friends. Others had found such services themselves. 

 

Jane's GP told them about a centre which had services both for her and her daughter. It was a...

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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.

Several carers commented that many more services exist today than when they started caring many years ago, including services for younger carers and things like free travel passes.

Services and activities for those who are unwell can give carers some free time, and lighten their responsibilities. Also, having the backing of a carer's organisation can be helpful when trying to sort out things for the person who is unwell.

 
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When Guo approached his MP it was helpful to have the backing of his carer's organisation.

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Age at interview: 72
Sex: Male
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I went in. She's not there. She's in London, at a meeting in London, no, a parliament in London. She says, “What's your problem?” And when I told her my problem, she says, “You know something? Every day somebody is trying to kill themselves. I've got people they're coming, cut themselves in front of me, and asking for help, and all this things”. She says, “It's terrible, nothing can be done.” So I was lucky the person who wrote the name of, everything, is on the carers letter there. And I show her the letter then. Then she looks, she says, “Oh, from the carers.” I say, “Yeah, I go to carers.” They told me to come here. Right away she took down the detail. Carer does help. You have some backing. You go yourself, nobody want to see you.

Some carers got one-to-one counselling sessions. Others were supported by carers' support workers. One woman said the support she got from her carers' support worker in a local voluntary organisation was “much better than the NHS” because it was available when she needed it and was more likely to offer culturally appropriate services (see 'Services and minority ethnic communities').

 

Her support worker from a local voluntary organisation is very flexible and gives her great support.

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Age at interview: 40
Sex: Female
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That's when I find it frustrating and not help, when I'm in the NHS. But when we moved here three years ago I found a lot better help up here. There's a charity called Making Space, which are for the carers of people with mental illness. So you get a carer support worker, and she was absolutely fantastic. So I could see her any time I liked. Ring her any time I liked, and every time I did ring her or there's, -she'd always fit me in. And she'd just either listen or she'd give me practical advice on how to speak to Adam, or what to do. What could be helpful, what's unhelpful, but she'd see it from my side as well. So it's a release for you because someone's actually acknowledging that, the impact on you and your health, you know. Because it's very, very draining looking after somebody with mental illness. And, if they've got a physical illness as well, and the physical is one thing but mental illness is a completely different kettle of fish.

Those who attended support groups took part in a wide range of helpful activities, such as artwork, trips, and sport and relaxation activities. Such activities were enjoyable and provided 'time out' from tension and worry.

 

Her community centre provides a space to talk and opportunities for lots of activities, which...

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Age at interview: 69
Sex: Female
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Ah, they do, you know, talking. I come here many times and give talks myself, over the years, over the years I've been a lot of places and give talks, you know, I've done that over the years. They come here, they encourage you, they talk to you, they, they make you, -here is like your home, like a home when you come here, all the carers we get on so well. So well, and they may have different things for you to do, different activities, we go here, we go there and make ourselves. I mean, about two or three years ago I think, about two or three years ago I went on a four day trip to Dublin and I really enjoyed that, I really did, and the first time that I'd been to Dublin and it was lovely. A group of us went -carers- and I really had a good time, so these things it breaks the tension, it breaks the thinking and the worry, so it's good this place, they do a lot of things for the carers. We do all sorts of different activities, going out there, doing this art work, all sorts we do, so it's, I can recommend it to anybody, but as I say, they could do more actually for the carers, I think they could do a lot more, you know.

 

At the carers' group Wei meets other people and does things which takes her mind off her problems...

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Age at interview: 61
Sex: Female
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Ok, la. I don't speak much English, only little bit. When we come here, we try not to think too much, just to enjoy ourselves. Not to think about our problems. Last week, we went to Harrogate. The organiser took us out, big group of us, for fun and afterward we came back here for dinner, than we went home. The whole day was gone just like that. It's nice to have this organisation, if this organisation does not exist, we would just stay at home, not much chance to go out and meet other people.

Others said drop-in services were particularly good for carers because they are flexible. Some attended computer courses or other training courses while others got help with translations, filling in forms or writing letters, and more general help to 'understand the system'. 

'Sitting services', where someone comes to be with the person who is unwell so the carer gets some time to him or herself, were very useful to several carers. 

 
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She is happy with the sitting service and grateful that the voluntary organisation can send the...

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Age at interview: 65
Sex: Female
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Well Crossroads is sending her every week and I do think they are very good so I've become a member of Crossroads now and we simply, -they sent a sponsorship form, they are going to have a walk I think. I don't know if it was this month or next month, I can't go, but I did send a donation. So I do my best, because all said and done, they are trying to help me and if we don't reciprocate in some manner, where would they stand? I do believe in that and I am grateful to them and I do say a thank you to Crossroads, because they have helped me. And I have insisted, you know, in the past I would have every time somebody new coming in, but she I have seen her, [name] is very good with my aunt and my aunt likes her. And when she is here, she is very conscientious. She doesn't stop at anything. She makes sure that my aunt has her full quota of everything, which some of the Crossroads personnel wouldn't do. So I've just made it clear that I must have her and only her. I know it's selfish, but to me, it's my aunt's wellbeing. So they have been good enough to send her to me, for my aunt. So I am grateful to them and the Alzheimer's charity - they are of a great help to me and I am grateful for all that, the little blessings in my life. So that's OK.

Longer term respite services are also available for some. But some found it hard to enjoy themselves when leaving their loved one in a hospital or care home. Several of those caring for someone with dementia worried about the quality of care in these homes.

 

She enjoys time off now, but felt guilty the first time her husband went into respite care.

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Age at interview: 72
Sex: Female
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How long is he there for?

He can go up to two weeks. But I go and see him every day. And then I worry about him because, at the beginning when he was walking about I didn't worry too much about him really. Although it took two or three visits really for me to relax because the first time I felt awful. I felt guilty. I felt I was sending him into hospital without really him needing the hospital, I felt really awful, I didn't really enjoy it at all. But then I tried to enjoy as much as possible because it's my only chance really. But now I feel again very apprehensive because he is very needy now. He can't communicate his needs. 

I sleep better without him because he is quite noisy during the night, so I do get benefits obviously. And I can visit people and I can go out, in and out as I please, which is nice. Yeah, but I don't know what the best thing would be if you could really design a, -I'm trying to think what. But I think, yes, I think you need, you really need to be away from the person, you look for a little chunk of time.

Carers' support groups
Many voluntary and community organisations (and some statutory agencies) run support group for carers. People had positive experiences of support groups and many attended every week. Some attended a carers' group while the person they cared for went to a service user group at the same centre.

In these groups, people were encouraged to share their experiences and feelings, and some said it made them feel that they were 'not alone.' They felt stronger and they also got new ideas, tips, and sympathy which, they said, made them better carers (see 'Getting the balance right'). 

 

When carers get together they support and learn from each other.

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Age at interview: 74
Sex: Male
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The positive thing is, when carers get together, that's a positive thing, because you know you bounce ideas off each other. One learn from the other etc, some of them come, they are crying you know, hard time. There was a police inspector who, where his step daughter -he came to one of the meeting. He heard about it and he came and he started saying this and that' she behaves like this, behaves like that. And I asked that questions I said, 'What about the GP'? 'Oh she has a different GP to me. And he wouldn't see me because she's an adult'. I said, 'What are the problems?' He said she was raped twice under drugs and this and that, and that had really upset her mind and she shouts at everyone. I said, 'Write everything down on a piece of paper. If your daughter is going to see the doctor tomorrow, go the day before and put this piece of paper under his door and we'll see what happens'. Do you know, within two weeks that girl was under the care of a consultant. Because it was evident from that, that this girl was not telling the GP anything at all. Just going and mumbling and this and that. But how can you say to people, some girls, for them it's difficult unless you get to know the doctor very, very well. Or if it's a lady doctor. So eventually it happened. So tips like that help.

So because of the carers group'

That's it, this is it, but you can also, there is also in that same group, that one fellow was on the same medication for ten years until we shouted and said, 'What the hell are you doing?! Get some other doctor, there are plenty around'. So his medication was changed as well. So things like that happen. And you can get tips and all that lark. And that is what a carers group's all about.

Some support groups were for people from particular ethnic communities, which meant people could use their own language. In other groups, some needed a translator to take part fully, and when this was not available, it could be difficult to understand others. 

 
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Because her English is limited, a Chinese organisation gives Agnes the best support.

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Age at interview: 50
Sex: Female
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To be honest I do not have any support, recently I found the Chinese Mental Health Association who speaks the same language to help me out. I really cannot find any support because initially my English is not very good so cannot express what I want to say. Although' I do not think many English association can help me because they usually say they cannot help me because I am not the patient but only the carer. So at the moment I do have support but CMHA can help me and give me support.

Most hospitals and GP surgeries now have a list of interpreters who can be contacted to come to an appointment. There are a number of telephone translation services that doctors use. It is hoped with these services people will have fewer problems understanding and talking to doctors.

Barriers to using carers' services
Because of their circumstances, it difficult for some carers to use the different carers' services. Not all services exist everywhere in the UK and some places have more services than others.

Some carers didn't use support groups or carers' services because they didn't have enough time or energy for it or because travel was difficult. One or two felt that they didn't need them.

 
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Ramanbhai doesn't need any services himself, but his wife benefits from the local South Asian...

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Age at interview: 62
Sex: Male
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Are there any services that help you?

I do not go to anyone at all at the moment. I am doing things myself presently. When I need help I will go. At the moment asking for help from services. They did tell me- if I wanted to go to the pub for a beer or like that. But in cases like this, if I wanted to go for a beer, my son-in law he comes with me, either my sister or my daughter will sit at home for an hour or two. Then we will go for an hour or two. If I want to go, once in month or every two months. That's it. There is no need because I have got no bad habit. First thing. So I do not need that, because I can handle things nicely.

When you come here, what do you get from it?

When she comes here, she benefits a lot. She gets a relaxed mind and joins in with others and when I am with her, she has less worries about coming and going, this and that. Her mind becomes a bit free?

One carer found a support group 'depressing' because it reminded her that she might have to continue to care for the rest of her life. Others said they hadn't used services because people from their backgrounds were 'expected to be strong' and manage without support.

 
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Sophie has not looked for support because in her culture you are supposed to be strong yourself.

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Age at interview: 42
Sex: Female
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Have you used any services, carer services yourself?

No I haven't, I haven't. I haven't at all. I just think it's part of being part of the BME community is that we always sort of believe that we can do it on our own and get out there and just do it all, we've got to. Whether you're a black woman or a black person, you just have to be strong because we're just meant to be. There is, you know, the stereotypical idea is that we all will just get on with it because that's just how it is but I think that's very sad still because I think we need somewhere else that we can share what we're going through with, because I think together, you know, we're stronger in numbers and be able to sort things out and have our say and make sure certain things are in place for our family members. We have to, we have to because things don't really seem to have improved over the years, that I've seen my sister go through the system, they haven't really improved at all. At all.

Some had simply never been offered any services and didn't know what was available. Some said procedures were too complex (this comment was in relation to statutory services) or that the services were not culturally appropriate (see 'Services and minority ethnic communities'). 

A service's catchment areas can sometimes make continuity of services difficult. One woman, for instance, could use a patient liaison service while her father was in a general hospital, but when he was moved to a psychiatric hospital managed by a different Primary Care Trust, this was no longer possible. 

Another carer, who works as a mental health nurse, found it difficult to find a support group where she could receive advice rather than just give it. 

Others said that services, especially those offered by statutory organisations, are not flexible enough, “not there when you need them”, and that when there is a crisis, a waiting list, “is no good to me”.

 

Amar thinks statutory services need to be easier to access in a crisis.

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Age at interview: 51
Sex: Female
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You know, I've had to seek help many a time, I don't just keep, kept like this by my positive thinking and diet and exercise and meditation, but also every now and then I have to go for counselling and when I have big crises I have to seek' and then I can never get it when I want it, it's always six months later, when I don't need it and then I've got it, by that time I've learned to cope.

There needs to be easy access, simpler, you know, more resources that people can access it when they do need it, not months and years later and also more awareness on whatever illness somebody's trying to look after in a more simpler format, what it is and what they could do. But it's all easily said, but when you're in it, although I know how to access more, I have the knowledge, I've experience looking after mentally ill people in my role, it's never easy when it's your own, because you have that power dynamics and attachment.

When dealing with a mental health crisis, emotions run high. One carer said she had 'fallen out' with several support services during times of crisis and thought that a mediation service should be available.


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Last reviewed September 2018.

Last updated February 2013.

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