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Mental health: ethnic minority experiences

Support from mental health charities & support groups

There are lots of national and local support groups and charities that provide support, advice and sometimes practical assistance and services for people with mental health problems. Many people had been to a support group, support centre or organisation - some had been referred or recommended to go by their GP. A few people got help via their carer or went along with their carer. Some people went to groups and organisations specifically for people from Black and minority ethnic backgrounds.

Benefits of using mental health support groups
Most people found going to groups and organisations of this kind helpful, including one man who thought that professionals sometimes didn't realise how helpful these things can be. One of the main benefits of using support groups and organisations was the opportunity to socialise and talk with “other people like me”. Many people made lasting friendships that they continued outside of the group, and some made friends all over the world via the internet and email. Some, however, emphasised that the people they met were not their friends, "it's not like people I'd hang out with”.

 

Mae made friends through attending a BME support group and says she feels at ease with other...

Mae made friends through attending a BME support group and says she feels at ease with other...

Age at interview: 62
Sex: Female
Age at diagnosis: 45
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Rethink will have some of the information for people as well if they want to join any of these groups and I think joining a group is a big help. You'll find that you make friends, you make the odd friend here and there and it's up to you if you want to continue the friendship outside which we have done with our, when we had our black and ethnic group going here we all made friends and we all had each other's telephone numbers and we'd go out independently as well. I've still got one friend that I see quite regularly and that's quite enough for me because I'm not used to having friends anyway so just having one or two friends is fine. 

But just that small group it makes you feel like you're being cared about and cared for and [my key worker] does a great job with that I think yeah. He can be a pest at times making sure that you, I've got to go out with him, 'Come on [Mae] you're coming for a cup of coffee,' that's only to get, make sure that I'm getting out. But he was, he was the one who really helped me able to get on buses and [get out?] because that was a big issue for me, I couldn't get on buses, I couldn't mix amongst crowds but now we go to town and we go out and it's fine. You know, I go out with him about once a week usually and it's fine and I'm really enjoying my life for the first time, yeah'

But sometimes you've just got to take it slowly and take advice from others if you can especially others that have been in the system and, you know, been there, done it, bought the tee-shirt, you know, and all the rest of it yeah. So I always listen to other people's, so that is why these group help, you know, when we used to have groups it was, you know, it's, it's good that you can sit down and you can compare notes with other people and, you know, what you're saying to them, you know, they're not going to go out on the street and chat you and say oh nut, nut, nut or whatever. You know, you're completely, so you're completely at ease and you could have a couple of hours away from, you know, the rat race and just enjoy yourself with these other people. And it's amazing, when you think about it, it is amazing the people that you meet, you know. You can go from the top person right down to the lower level, you know, on the street person but basically we're all the same when it comes to our mental health issues so everybody should take a bit of heart from that, yeah'

But no I do, I feel I've had help from Rethink, it's been bumpy at times obviously, we've all had our differences but if I hadn't had them where would I be, I don't know, I couldn't tell you that, probably not anywhere' Just show us a little bit of care and, you know, good attitude and I'm sure most people respond to that. Well I've found it coming here anyway, you know, will respond to that.
 

Lots of people felt that talking and sharing experiences with people was really important and gave this as a reason for attending a group or centre. Although some people found talking helpful, they didn't always share their experiences with others [see Terri below] - several people remarked that it was a problem when other people didn't want to talk because they felt that was the reason to go in the first place.

Many people emphasised the benefits of meeting and talking to “like-minded people”. Such meetings provided people with an opportunity to hear other people's stories, discuss treatments and help each other. One woman felt it was “such a great comfort” to find people with the same symptoms, and another thought people with personal experience give better advice than people without. Several people talked about being able to “compare notes”, and some found comfort in comparing themselves with others who they saw as being more unwell than themselves. Lots of people said that they learnt a lot from attending the groups and speaking to others about support groups, coping strategies, symptoms, medication, and social security benefits, including one man who said it was satisfying to help others in this way.

 

Anton goes to several support groups - even if he doesn't feel like it - and finds them helpful...

Anton goes to several support groups - even if he doesn't feel like it - and finds them helpful...

Age at interview: 64
Sex: Male
Age at diagnosis: 45
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Oh yes, I have go to different' because sometimes, when you are depressed you want to be with a group of people who understand, so they have support groups, they have got one in Croydon, they have got in North London. So when you are down, you think like I will drag myself, how will I drag myself, oh let me got to the Islington support group today. Tomorrow they'll have a group in the City of London. Thursday there will be a group in Ealing. So like that you sort of do the circuit. Sometimes you say ah I just couldn't be bothered, sit down.

And how does it help when you go?

Well when you are with a group of people you can talk. And while you are there for one or two hours your mind is off' at least you know people understand you. And then what happens in the support groups is that you go round telling your little story about three or five minutes, you know, depending on the number of people, three minutes if there is a lot, five minutes if there are not many. So then when you go through, somebody will say, 'Oh well I had the same thing, but I did this.' 'This felt'' And then you know it's coming from somebody who had the problem and not from somebody saying, 'Go and have a meal.' 'Go on a walk.' Like one of my neighbours, a few weeks ago he said, 'Oh you must have a walk.' 'Oh,' I said, 'Oh thanks Mr [name removed], telling me this, I never thought about it, I will definitely go and have a walk.' Then the next day when he came in, 'Oh I had a one mile walk. It didn't do anything. Any other bright ideas?' And he got the message [Laughs].

Do you feel it is more worthwhile trying things out, that if someone has had an experience of depression and they, they suggest something to you, do you feel a bit more like, well at least that might work?

Oh yes

Because it worked for them?

Yes. Now like I belong to an organisation, an expert patient group, [EPP]. Now the problem with the expert patient group. Obviously I try my very best, not to, what do you call, be all the time with the sick people, because you're going to get into a rut and that can take over. But anyway this girl [name removed] told me, 'So come to the expert patient group.' And they sent me on a course. Then I said, 'Do I want to go to the group and drown my sorrows and find comfort in what other people have?' She said, 'Ah come along.' 

So I went this six weeks course, half a day for the every week, and then I found, not only I was with a group of people who were ill, with different types of illnesses, heart, diabetes, mental illness, everything. The person who was lecturing or training he's also an ill person. And then what we do is, he will sometimes say things, and then somebody says, 'Oh I had this problem,' they'll put on the' 'What did you do?' Then, 'I don't know I was really going through hell.' And then somebody else said, 'Oh no, no, no, do this, this helped.' 

Now for example there was a girl called [name removed] in one of the groups, and she said, 'I don't know, my filing, I've got a pile of things to file, this, that and the other, in a in a mess and everything. And that sort of a business.' So then I said to her, then I said to her, '[name removed], what you do is, ideally, when you, when you get a letter you want to reply, what you do is you make a, a, a, what do you call, note of that letter, like heading of the letter. And if you've got a file, file it. So you got on one page you have got all the notes and the heading of the letter, so when you feel better, you know where to look for the file and you can reply. But if you put it in one big bundle then suddenly you are lo

Of particular importance was the feeling that people with personal experience of mental health problems are better able to understand - and this was important to many people. One man said he wouldn't discuss his depression with people who had not experienced it. Many people said they felt calm and at ease amongst other people with similar experiences because they knew they wouldn't be shocked by or prejudiced against them because of their mental health problems. Although people with experience of mental health problems attended the groups, one man remarked that the staff were too busy to talk - even though this would make people feel more welcome - and remarked not many people from Sikh backgrounds attended.

 

Shaukat goes to social events arranged by a support group and can relax and enjoy himself because...

Shaukat goes to social events arranged by a support group and can relax and enjoy himself because...

Age at interview: 36
Sex: Male
Age at diagnosis: 30
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I recently went to, you know, wedding with people from the SA group down there. And I was fine there because they knew like my worse secrets in a way [Laughs]. So, it's like, you know, it's like I could be more relaxed then whereas if it's family or relatives' weddings or even friends from university that I knew years ago I don't feel relaxed although I can be there and I have been going there. But it takes, you know, a lot of energy I suppose to be at those events than it does to be at another wedding where people know me. So, you know, with the people that know about me I don't feel worried about, you know, doing anything wrong or being embarrassed or anything. And so the anxiety doesn't come about. And I can, you know, do things that I normally find difficult I can do those with this group of people and I can't do with another group of people. So it makes it complicated [Laughs].

So like, you know, I mean things like when I go out to my friends at work and we go out to [nearby city], we sort of have social nights out as well. I can go onto a dance floor with these people, whereas, you know, all through university I was, was really scared to on a dance floor. It was like very anxious with people because I thought they, people are going to think I'm not really , what's the word? You know, I can't, you know, I was thinking I can't dance properly or I can't do this and people would be laughing at me or whatever and things like that. And because I don't have those fears with these people because I think, you know, even if they are, they know what I'm feeling and then they understand it. So it doesn't matter and I mean, you know, it's like, it's things like that I can go to more meals or, you know, I can do a lot of other things I find harder with other people than with, you know, of this group of people. And it's, it makes it weird, because, you know, apart from them I don't really go out anywhere and I don't have a social life. And people think I don't go out. People think I don't really want to talk to people. Whereas when I'm with, you know, with my friends from SA group there's, you know, everybody's like, they don't think that, they sort of know, you know, I'm like a different person because we'd be going out and we went cinema, you know, on Friday. I don't think I've been to a cinema in [city] for about, six years, I don't know, because I don't have anyone to go with me because people don't really know me. 

 

Raj likes going to the support centre because he doesn't have to hide anything or worry about...

Raj likes going to the support centre because he doesn't have to hide anything or worry about...

Age at interview: 55
Sex: Male
Age at diagnosis: 54
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The doctor sent me to [name removed] then I came here. After the two blackouts I don't go out alone, I'm worried, now I have a bus pass my wife goes with me and we now don't have to pay and before you think of the fare. Before there was a one hour bus service and now we have our pass it's half an hour service. We didn't go out before and now we go out once twice a week.

The bus pass has made a difference?

Yes. It's an encouragement that I can go out with some and by coming here I have a free mind, that no evil eyes are looking, nobody looking on top of you, what you are doing, how you are sitting, how you are standing, that free feeling is making me feel better.

That no-one is jealous or no-one is looking at what you're doing?

Yes, like when I have back problem I don't tend to go out and it's difficult getting up and down. When I am mobile then I come here and talk and have fun with someone or watch television.

There is nothing wrong with him?

Yes one is different, of the other. By looking at the benefit that would not be given to me. The organisation here is not looking at you with evil eye any time and what you are doing and with that I feel relaxed. 

You feel free?

You don't worry about your problem and don't have to hide it. You don't have to mask it or pretend, you sit about and walk about as you feel.

As normal?

Not to suit the other people. I think the people that come here feel better when they return home.

One woman felt that people with personal experience were “the best people” to set up support groups “because we know what we want and what we need”.

These support services helped people in different ways: some benefited from one-to-one meetings with a keyworker or practical help and advice about accommodation and social security benefits; while others enjoyed the activities that were on offer, including cooking, reflexology, computers, day trips and social nights out, films, walking, and pool [see Judy below].

A few people mentioned how being involved in these activities gave a boost to their confidence, including one woman who said getting involved in a project helped her to feel useful and capable again. One man, however, felt there should be more activities at the centre he attended (see 'Suggestions for improving services'). Some found the 24 hour support offered by the internet or in one case, an answerphone service (with breathing exercises for people having panic attacks), particularly helpful. Others were just glad to have somewhere or somebody to go to, including one woman who said it gave her something to look forward to. Another woman said that although she'd had her differences with the organisation she attended, going there made her feel cared for.

 

Terri stopped going to the support group because she felt didn't fit in, but going gives her...

Terri stopped going to the support group because she felt didn't fit in, but going gives her...

Age at interview: 41
Sex: Female
Age at diagnosis: 32
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And, [sighs] and, you know, I've just started to go, I used, used to go to [support centre] every, three, twice a week, Wednesdays and Fridays. And I stopped because I didn't feel like I fitted in and, you know, withdrawing myself. And I, if I went, if I went [the support centre] couldn't do anything for me. I just felt like giving up. And then I got a visit from one of the [drop-in centre] staff. And they said, you know, 'You've really got to start going, going back to [support centre].' So I said, 'I'll try, I'll go back and see how I feel.' But I feel a lot better that I've come here now. All those worries that I had then, you know, have gone. So, [sighs] so I feel a lot better that I've come here. I've got somewhere to go in the week. I mean it's not much, it's just one day a week, but it's something. And they increased my medication because, you know, I was having a hard time. So, you know, that's all I can say really'

What keeps me going? Different things. Things that I like doing keep me going, you know.

What kind of things?

Things like doing a bit of shopping, buying things for myself, going for a walk, coming here. I like doing. Shop, oh, I've said that, shopping. Well, just different things. You know.

And what is it about coming here then that, that's so helpful, that, that you like it? Why do you like it?

Well, it makes me, I mean, around people, on my own, really, in my flat. And, and coming here is just something to look forward to. Makes you get out of your bed, something to get out of your bed for, instead of laying there, sort of, you know, you can't sleep any more.

Do they have activities and things here?

Yes, they do go places, like we go shopping and have, go out for a meal or do something here. There are various things you can do, each week something different.

And have you, you got friends here? 

I have people that I talk, I wouldn't say friends, just people that I, I speak to, you know, sometimes, you know, sometimes. Sometimes they don't say anything, sometimes they do.

Does that help, having people to talk to?

Yes, it does, yes, it does, yeah. Have conversation with people rather than, you know, stuck in your flat there's no one to talk to. Yes, this is, it's good, yes, to come here, to , to, to know different people.

So it's like good company.

Yes, the company, yes, come here for company.

And is it helpful, I mean I don't know if you talk about, you know, like share experience with, with, experiences with people?

Yes?

Is that something that you do there?

No, I wouldn't say that, no.

Difficulties associated with using support groups
Attending groups isn't always easy. One woman felt afraid about going to a new place, “because I didn't know the bus route, I didn't know where I was going”. Others found it difficult and even stopped attending their groups because they found it “hard”, felt they didn't fit in, didn't feel like going or found it too tiring [see Anton above].

There were also practical barriers for some. The location of groups sometimes meant people had to travel to somewhere new or far away to attend - and people's location could also determine whether a group was available or not in their area. A few people attended groups in several different locations. One woman chose to attend a group that was not local because there would be other people from Black and minority ethnic backgrounds there.

 

Judy's keyworker recommended that she attended a group with other people from Black and minority...

Judy's keyworker recommended that she attended a group with other people from Black and minority...

Age at interview: 52
Sex: Female
Age at diagnosis: 22
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Yeah well I had a breakdown in 2001 and my key worker she recommended here. Well to cut a long story short my social worker wanted me to go to the one in [district] because that's the area I was living in and then my key worker says, 'No a lot of black people down in [another district], I want her to go there.' So I got a referral, started, from 2001 I've been coming here.

And was that important to you to come somewhere where there will be other black people?

Yes my own people.

Why was that?

Who I relate to them. I'd just had a breakdown and it never really mattered to me, whether white or black, I'm not racist but when my key worker said to me here, oh, they used to have cooked lunch here, that was a part of me coming here. And it's straight from hospital you come here but I never come straight here, I had a relapse and then they got me in here, my doctor referred me here. 

So you didn't mind whether there would be other'?

No whether [district] or'

No...

Mm.

Okay do they have particular services here, particular activities here?

Yes we had a lot and I was involved in a lot. Well, one of the workers, one of the staff left and I started doing the cooking, the man just asked me if I would cook, because I used to do lunch and everybody was excited and please at the different taste of Jamaican food. Yes, sorry, sorry you weren't around to have some of it. And then so after cooking, [local] College had a computer course here and I was, I was a part of that course and they had a van and they used to take us out on day trips. I enjoyed that, different places. And I got to know the staff and we all got along and the clients, we all got, and a women's group used to go out on trips or sometimes they'd stay in and watched a movie. The only time I didn't come down, I didn't join the Wednesday social space and I didn't come down on a Saturday because I had my housework to do. But I prefer here, always, although if I'd gone to the [district] group it would be walking distance from my house to the group. A lot of shops was there where I could do the shop or if I had more money I could, but after they brought me here I said here is near the town, I can easily run into town.

People also talked about fitting groups in around their housework, work, travelling, and looking after children.

Some people had never attended a support group or had decided to stop going because they felt they had enough support and people to talk to among family and friends. One woman found attending a support group too depressing.

 

Dolly doesn't go to support groups anymore because she found them too depressing.

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Dolly doesn't go to support groups anymore because she found them too depressing.

Age at interview: 36
Sex: Female
Age at diagnosis: 21
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Do you get any support from support groups and things like that?

No. I used to, but no… I think that's, you know, I think I've just moved on really from, from kind of just being more self sufficient really and just having the support of family and friends. I think that's enough at the moment.

Was that something that you used to find helpful then?

No, no, no. I mean I didn't, you know, for example the nurse would say to me, “What don't you go to Depression Alliance,” I think they're called, I'm not sure. And I said, “No, no. I don't want to go.” And my friend, “Oh I want got to go.” And it was actually very depressing [Laughs]. I, you know, you wanted your depression to be lifted, not kind of, you know, compounded really. So I'm not going to use them again [Laughing]. So…

What was it that was depressing about it?

Just people just saying, “Oh my life is so sad,” and, “It will never get better.” And, well I understand that because that's what I was going through, but I want something to help me, not, not just kind of, you know, add to the depression [Laughing].

Another man said he was willing to try anything but didn't know of any.

 

Ali's considering going to a support group, but finds the idea a "bit daunting". (Played by an...

Ali's considering going to a support group, but finds the idea a "bit daunting". (Played by an...

Age at interview: 27
Sex: Male
Age at diagnosis: 26
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Have you been to any support groups or anything like that?

No.

Is that something you don't'?

I don't know of any. If you know of any, phone me references, I'll go there. I'm willing to try anything. I'm, I'm sick of it. I'm as sick as you get.

Is it something you think that would be helpful, talking to people?

I don't know. I don't know. If there's anything you try it and then you see how it goes. But being in a lot of people itself might be a bit daunting for me. Sometimes it is, sometimes it isn't. That's again undefinable. I don't know. But yeah, I'll probably give it a shot. Yeah.

Last reviewed September 2018.

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