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Mental health: ethnic minority experiences

Suggestions for improving service provision for mental health

Many people made suggestions for what professionals, policymakers, mental health trusts and researchers could do to improve the situation for people with mental health problems.

Suggested improvements regarding service provision
The people we interviewed had a number of ideas about what was missing from mental health services and how they could be improved.

a. Service provision, access and quality
Many people thought that there should be more support and services for people with mental health problems, including support in the community and more support groups. One woman described her fears about growing older and highlighted the need for support for vulnerable people without family support. People with mental health problems might also be vulnerable in other ways, for example, they might find it difficult to get care for their physical health problems.

 

Mae says there should be more support for lonely or elderly people with mental health problems...

Mae says there should be more support for lonely or elderly people with mental health problems...

Age at interview: 62
Sex: Female
Age at diagnosis: 45
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I did, you know, because one time I though well, you know, living on my own and my family weren't talking to me and of course I didn't know my brother was still alive then, I thought well what happens as I get older, what's going to happen to me, you've go to think about those things. And I did ask somebody from my mental health team if it was possible to have like a social worker and she said no, she didn't know how I would access that. I asked my doctor the same thing she didn't know how I would access anything like that so it just leaves you vulnerable. So the medication is dealt with but your peace of mind, thinking well I'm going to die alone and perhaps like that old fellow who died in our flats he was in his flat for three months before they realised, you know, is that going to happen to me? Well obviously it's not going to happen now but for other people who live on their own yeah there's got to be a network where these people can actually get the help they need. Even if they don't want to chat to somebody, somebody that can, you know, say well okay I haven't heard from so and so, I know that on the other hand that you've got a problem it might be intrusive, you know, the person might think you're being intrusive but if they agree to just like have somebody, like a carer who would say can I just make sure you're okay every now and again, you know, I think that could help so many people because there's so many lonely mental, mentally ill people'

Also with the police as well I think there should be a lot more help in police stations when mental, when people with mental health issues get arrested. I mean I've been arrested so many times and you're just handcuff-, their idea of keeping you under control is to handcuff you with your hands behind your back and leave you in a cell which is not right, you know. 

Then I think a psychiatrist or somebody, somebody with a mental, you know, if they realise that somebody is, you know, is not particularly a drunk, that there's something underlying with that person as well, mental health issues, then I think a mental health team should be available, a crisis team of some sort should be available to help that person while they're at in police custody, yeah. I never had any of that and so you can't, you haven't got access to your medication, you're off your medication, that's only going to make you worse. You're locked up and you've got, the, you know, like still the handcuffs on because they haven't got the time to put you on suicide watch all the time. A lot of the times they do but, you know, so there's that part as well, you know. So I've experienced it a lot of times so yeah. So I think the professionals need to look a lot more into what, you know, each individual case you can't lump everybody in together, you know, to say oh this is, these people are manic depressives, so their behaviour would be blah, blah, blah. Everybody is different. You know, I might act different to the next manic depressive or whatever and, you know, perhaps I might not show my symptoms because there's one thing about manic depression, depressives you really are clever at hiding your symptoms and very good at manipulating people, they know that and you're very good at manipulating things your way, you know, to your way of thinking so yeah, that, that, there is that. But everybody has got their own illness, it's like anything they're all individuals, we all are individuals and so we should be treated as such, not just lumped in together and well you can go to this group because you're manic, [laughs] you can go to that group because you're schizo, you know. No [laughs]. 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.

 

People with mental health problems should be considered vulnerable in terms of their physical...

People with mental health problems should be considered vulnerable in terms of their physical...

Age at interview: 49
Sex: Male
Age at diagnosis: 15
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And as far as I'm concerned the people should, should be considered as at-risk as vulnerable adults for their mental health, for their physical safety if they're in the community and they're surrounded by people who seem them as, as vulnerable adults who they can hit on and sexually abuse. And I think they should be vulnerable in the sense that they are at, at risk of serious medical neglect and if, if such people die as, as this young woman of 34 died, there should be the same process of investigation that takes place where there's a Serious Untoward Incident that, that causes a suicide.

I mean, what is so important about suicide? What is so important that we only investigate those forms of, of death? Are we telling people that they have to commit suicide in order to make a statement and get an investigation because I've heard people, patients saying that. And I mean I've heard patients saying that they'd be better off in prison so I'm only asking that, that they commit crime, are we saying that, that mental health service is so bad that it's provoking an escalation in symptoms?

OK? I mean that's something just very fresh in my memory and it, the point that I wanted to make to, point, although I knew relatively little about her, I only spoke to her a few times, she did mention to me that she was a fellow victim of institutional sexual abuse. And I think that once, once you've got that experience that, that there will be all these counter-measures taken to prevent you, your injuries being treated and therefore investigated and therefore reported to the police. And this will lead to your long term exclusion from health care. And that in turn means that you become potentially a typhoid Mary, that you can develop all sorts of infectious diseases that won't be investigated. And that was perfectly OK when the old institutions like bleep, bleep house that were, where people could just be put away and, if you like, quarantined in those old asylums. But, I mean, you now have young nubile people who are, you know, potentially sexually available like anyone else but nobody knows whether they're being treated or not. OK.

Many people also thought that services should be easier to access. Some had experienced difficulty accessing services, including one man who found it difficult to get his GP to refer him to a psychologist and another who would have liked some form of respite care while he went through a period of depression. Some mentioned the importance of speeding up the assessment and diagnosis process. Others wanted specific treatments, including counselling, group therapy, talking therapy, and more intervention in hospital. A few thought that group activities and opportunities for social interaction were important. One man wanted the opportunity to do music and drama - but not music or drama therapy. He went on to set up a music project for people with mental health problems

One woman, who had been arrested several times, highlighted a need for the provision of more help in police stations [see Mae above].

 

Shaukat says it would help his social anxiety if he had more opportunity to practice being in...

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Shaukat says it would help his social anxiety if he had more opportunity to practice being in...

Age at interview: 36
Sex: Male
Age at diagnosis: 30
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But I think the next stage was like trying to replace those thoughts with other things and with the therapy it didn't really, it didn't really do well in that side because I think the actual things I did with the therapist we we're just inside indoors we didn't actually go into the situations where I was, you know, fearful and that. Sort of do that. And I heard other people that have done that, you know, from the groups I was going to that they'd been out in the situations they feared with their therapist and, you know, sort of conquered them in a way. And I thought that would have helped. But he, you know, the therapist I had been to didn't really do that'

And I think that's one of the things that takes a lot longer to, you know, break out of these sort of anxiety inner feelings of, which come with come social anxiety. Because you don't have somebody that, you know, a therapist who is there every day when you're facing the situations and you don't have a structure to how you can break out of them. and that's what makes it, prolongs it. I mean the example of really about how me making, you know, the making teas at work or whatever, I've been there five years and I've not attempted to do it whereas if I had somebody there or even if my manager said, 'Oh, I'll go with you and do this and, you know, we'll practice it a couple of times,' that's probably what all it would have taken for me to do that. So, sometimes, you know, it doesn't have to be sort of, you know, like a professional or a technically qualified person, you just need some sort of person who understands a bit, you know, how difficult it is and supports you and then, you know, you can learn to break that.

Some people thought that more funding should be made available for Black health care organisations, proactive mental health care strategies (including more talking therapy, reduced waiting times for assessments), and child psychiatry. Many said they would be in favour of professionals campaigning for more investment in the mental health sector, which they felt was often not given enough priority within the NHS. One man emphasised the importance of initiatives and interventions being sustainable. Another man thought it was important to evaluate services. 

One man thought that the quality of services would be improved if the mental health trusts introduced compulsory drug testing for all patients, staff and visitors and if staff were prepared to 'blow the whistle' on bad practice. He also suggested that Serious Untoward Incident enquiries - currently used to investigate deaths from suicide - should be expanded to include enquiries into the deaths from all causes of inpatients and patients who have been recently discharged.

b. Gender and culturally sensitive services
Some people referred to the need for gender and culturally sensitive services. One woman, who had a history of sexual abuse, thought that there should be more services for women in the community, including counselling and support groups, and single sex wards in hospital.

 

Ugo says there should be more services for women and minority ethnic groups.

Ugo says there should be more services for women and minority ethnic groups.

Age at interview: 38
Sex: Female
Age at diagnosis: 31
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More support in the community and more women's groups. There's no more, there's not much women's groups. There's actually no women's groups for people in the black and ethnic community really so if there was more groups for us to go to and where the mums and the children can go as well. So it's just for women only and it's run by women as well so it would really be helpful.

And it's interesting because that's my next question, you said about services specifically for women from black and minority ethnic backgrounds'

Yes

What kind of things would, would you want from a service?

Like support groups like you could support yourself, support each other so there'd be service that people, women can come and join who've got the same difficulties and they've got, or they've got children and they can bring the children and not worry about then what they say is going to have the children taken off at the end of the day. And it's about helping and supporting each other and being able to talk together and get ideas off each other.

And you think specifically for people, ethnic minorities though?

Yes, yeah because it's important because there's different cultures and you're not allowed to talk about it in the community because it's an embarrassment so it would be nice if it was just for us, the ethnic minority community.

People also described the need for services specifically for people from Black and minority ethnic backgrounds. They suggested that services should be culturally sensitive: they thought they should take people's ethnicity and religion into consideration and make provision for it and provide culturally appropriate food. One woman emphasised that such provision should be fully integrated into services. One man reflected on the under-representation of Black doctors in the mental health system and the failure of the system to understand Black culture. Several people for whom English was not their first language mentioned the need for interpreters.

 

Jay says services should cater for people from different backgrounds as part of their normal...

Jay says services should cater for people from different backgrounds as part of their normal...

Age at interview: 42
Sex: Female
Age at diagnosis: 34
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When someone comes in and they see something or feel something that is familiar to them, it helps them to feel comfortable and relaxed. And then your interaction with that person is better. They come away with something more. And this is what services don't do. They don't, it can be as, simple as a smell. I've had people come in here and, when they're doing the training and the, and, and the caterer comes. And the caterer comes in and, and he brings rice and peas. And a man walked in, and he said, 'Boy, smell like home.' Do you know what I mean? Something as simple as that. We've had like things being cooked in the kitchen. And, and, and people, like this Indian lady, she came in and she goes, 'I can smell it.' And I said, 'What?' And she goes, 'A tikka.' And I go, 'Oh, is it a nice smell?' She goes, 'Yes, it reminds me of my childhood.' Do you know what I mean? It's these little things that can make somebody feel like, 'I actually belong here. They have some kind of insight into my world.' And they appreciate it, moreover they appreciate it. And I think that's what's missing. 

 It's hard, it's not, don't get me wrong, it's not an easy thing to do. Because we spend an actual, quite a lot of money on trying to achieve that in the project. It's costly, but it's worth it. Because then that person, who may be Asian, Chinese, African, Jamaican, some kind, other West Indian country, wherever they come from, will go away with this really warm feeling about your service or your project, tell somebody else, that comes in, and it goes like that. Word-of-mouth is the best advertising you can do. I stopped advertising for my project a year ago. There's no point. People just walk in off the street. 'So-and-so told me.' I don't need to do it. People refer from the mental health service, OTs and doctors, GPs now, everybody. So you, you've got to let your reputation speak for yourself. And that's by creating a service that you started, started thinking about everybody. You can't think of every single human being, but you try and, and think of a service that says, 'Okay, we're going to create some catering for a, a particular group. We're going to have a rota of catering where every time that we cater we make sure that we've got tea, coffee, hot chocolate, herbal tea.' Right? Because a lot of older black people don't drink tea and coffee. They eat, drink hot chocolate. And then some of them have ditched all of them. And they, they like their little camomile tea. The man tell me, 'You got camomile tea?' I said, 'Yes, we have some camomile tea,' you know. And, and it just makes them feel welcome, you know. 

If you're going to do some sandwiches, make sure you do some chicken and whatever and whatever, but give them a little hard dough bread with some cheese. Do you know what I mean? Put some samosas on the side. Put some, you know, satay chicken. Mix it and blend it as a norm. It's not a special occasion. You know, don't tell me you're integrating people and you've got an integrated service because you have a Caribbean night. You're still segregating people to one night. That means, 'On that night I'm welcome, but any other night I'm not welcome.'

Some people thought that professionals could continue to learn and made suggestions for health professionals training, including training GPs to recognise symptoms. They recommended that professionals involve people with mental health problems and from Black and minority ethnic communities to contribute to teaching (See Dolly's story below) and policymaking.

 

Niabingi says there should be more funding for Black health organisations, more consultation and...

Niabingi says there should be more funding for Black health organisations, more consultation and...

Age at interview: 42
Sex: Female
Age at diagnosis: 25
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Okay what kind of things am I talking about, okay that's good and so I'm now quite, well I think, I think that, will for a start a very, a very sort of like basic thing that wouldn't be, you know, sort of like separatist for a start would be to fund black health organisations because even the BME hostel where I'm, I'm going, I'm doing now is struggling with funding, they've had their funding cut, they're having threats to, you know, you know, that they're not getting any funding any more so they're going to be, they have to close down. Do you know what I mean? I know of lots, you know, lots of black organisations that are sprung up, done a bit of good and because of their funding, you know, which is only sort term or not very much they've had to close down again. You know, so something like that, just generally the local authorities and the government support the black organisations that are coming up because they are coming up without all the need and they are doing the job but, you know, on the bare essentials or for a short time and then no funding and they get, you know, they, they have to close down. So for a start that would help the healing. And actually listening to what' you know, because, you know, the black community has been consulted and consulted and consulted we, you know, they say we're hard to reach but whenever they have a consultation there's always somebody who will talk, you know, and not, not just someone, some people, you know, there's always, you know, people will talk and say quite sensible things as well. I mean so it's, you know, and it's not hard to get some consultation from, you know, the BME community, they're not that hard to reach'

So' yeah and then yeah well that's basically it, you know, things like I'm not sure what have I heard for, you know, well sort of, and I think something that I've heard quite, quite often is a place of our own, you know, BME communities talk about just a place of their own where they can chill out, you know, like women have a women's group, children have a toddlers' corner, do you know what I mean? You know, just somewhere we can chill. And not somewhere cheap either and dilapidated, somewhere pleasant and airy and funded well, you know. And' you know, somewhere we can talk and just not that, just give them a place but keep sort of finding out what they, find out what they want. Once we've got a place to talk okay, what are we talking about, you know, what, you know, what, you know, you know, you know, what is coming out of the conversation that would help to heal'?

And but, you know, but I have found, I mean because in the small time that I've been in the mental health system I mean they're, when I first came in fifteen years ago they're talking about, you know, misdiagnosis, high numbers of this in the mental health system, you know, schizophrenia being , you know, being predominant, high medication, lots, lots of us in secure or lock up wards and that was fifteen years ago and I thought and I heard people saying oh this can't go on, this can't happen, black and white, black and white. And yet fifteen years later I'm hearing the same thing, I'm hearing, and it's even getting worse, the numbers are going up. 

And then after some investigation and research I find out that way back in the 50s and 60s this was happening. So what is happening? Either they're not taking it seriously or, you know, or they're just ignoring completely, they go out and consult and then just completely ignore the information or the findings that they get. So , you know, I'm keen to do more research and find out exactly, you know, where is all this information's going then that they're collecting and why is something not being done about it. Or if something is being done about it what is being done because it's not working. So that
 

Dolly says she thinks the mental health system "stinks" and suggests that people with mental...

Dolly says she thinks the mental health system "stinks" and suggests that people with mental...

Age at interview: 36
Sex: Female
Age at diagnosis: 21
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I think the system stinks actually [Laughs]. I have to say. I think it needs a lot of changing.

In what way. What kind of changes?

Well, most people who have gone through the system will tell you. What helps them. I mean, you know, I'm finally on the waiting list to have psychotherapy but this is after 22 years, since I first became unwell' I mean I've had to wait 22 years to get psychotherapy. And that's ridiculous. And, you know, I know from my kind of, my friends who are Black, they have to wait even longer, so the system is quite racist as well. So it's, I think the kind of policy has to change as well and it shouldn't be, the policy shouldn't be kind of dictated by the kind of doctors and managers, and policymakers, you know, service users should have input as well. In some hospitals they do, but, you know, it's still not enough. So I think, you know, where fundamental change can happen, it needs the service user kind of input, otherwise what's the point? You're just not listening to people who use the services, so.

Suggestions for research
Many people had ideas for further research into their condition and its consequences for their long term health, and the effects of medication. Some mentioned needing to know more about the causes of mental health problems, including the role of ethnicity and psycho-stimulant drugs ('uppers' such as caffeine, nicotine and amphetamines). Others had specific questions they would like to see answered about where voices came from, and the nature of the chemical make up of the cells in the brain. 

 

Edward would like to see more research into the nature of the chemical make up of cells in the...

Edward would like to see more research into the nature of the chemical make up of cells in the...

Age at interview: 59
Sex: Male
Age at diagnosis: 20
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Well I mean I think that probably what could be researched a little bit better, but of course they're making big advances all the time and so I could be out of date when I'm saying this, is the nature of the chemical, the chemical make up of certain cells in the brain and, and the make up of certain receptors that take the chemicals, the chemicals out of the brain to the various organs, you know, there's receptors, halfway houses, like the adrenal gland and so forth. I think that if those genetic factors in the cells are studied more, I think they are actually, they can identify schizophrenia now by looking at your cellular structure but I'm not sure whether they can. then that would be a big help but, but we must be very careful not to prejudice our behaviour by such an analysis because it is an analysis of measurement and this illness, or whatever it is has a genetic component and environmental component, and there is nothing to say that there will be an outbreak just because of the genetic component, nothing to say and so therefore these tests and investigations need to be done without prejudice when the results are printed there should be that declaimer at the bottom, you know, be careful it's not a one size fits all experiment that's going to solve everything because unfortunately I have difficulty in explaining this to people as to what schizophrenia is and I'm still not quite clear. I mean I know it is, it is a perceptual thing and there are different extremes of feeling in, in the same circumstances as the rest of the population that can be identified as different in me to the rest of the population.

A few thought there should be more investigation into the relationship between spirituality and mental health, and the effectiveness of faith-based interventions, complementary and alternative medicines and meditation. One man thought there should be more research into the way in which people from different cultures, especially migrants, treat mental health problems. One woman wanted to find out more about why the number of Black people in the mental health system being diagnosed with schizophrenia has increased and not reduced, despite the research that has been conducted [see Niabingi above].

 

Hanif says he thinks there has not been enough research in the UK into the effectiveness of faith...

Hanif says he thinks there has not been enough research in the UK into the effectiveness of faith...

Age at interview: 49
Sex: Male
Age at diagnosis: 23
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And I read some papers or, you know, or heard some stories or in some, never really, we really haven't got good enough evidence on it where in other countries they've used people who've had mental, who have mental health problems, you know, use either kind of faith based interventions as part of coping, you know, in countries like Malaysia, you know in Saudi Arabia they've tried using, you know, prayer as a therapeutic intervention. You know. Not as a cure but as a therapeutic intervention where, you know, they are encouraged perhaps to use their faith as a kind of coping mechanism. And, you know, for some it does work.

I think in this country we haven't as yet explored, you know, that, that kind of, you know, that therapeutic intervention. You know, there's a lot, some work has been done with, you know, kind of mainstream, you know, Christian organisations of faith but we haven't done much work in, in terms of other religions or faith.

One woman, however, thought money should be invested in therapy, and not research.

There are organisations that provide information and help for members of the public who would like to get involved in doing as well as participating in research. Find out more about patient and public involvement in research.

3. Suggestions to reduce stigma around mental health
A few people highlighted the need to reduce the stigma of mental health problems. Some saw a clear role for professionals in doing so: they thought professionals should produce and disseminate culturally sensitive information about mental health and promote positive images of mental health/challenge use of mental health terms in society.

 

Hanif says professionals should campaign to reduce the stigma associated with mental health...

Hanif says professionals should campaign to reduce the stigma associated with mental health...

Age at interview: 49
Sex: Male
Age at diagnosis: 23
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I think we have to continue our kind of, you know, work, you know, to not only to disseminate but in terms of to produce good quality information, you know, whether it's through initiatives like this, you know, putting up information on the websites, you know, through , you know, producing good quality material, you know, with some good, good, some kind of standardised material because from our, from our an ethnic minority perspective, you know, we don't have a kind of, you know, we can find ten different leaflets on depression produced by ten different organisations, you know, so we need to I think, you know, have some kind of consensus to say well if you are producing something on depression, yes we need to make it culturally sensitive, let's have some kind of agreed standard because, you know, and I think, yeah, and the message is, you know, that we need to keep promoting positive aspects of mental health and, you know, we need to see more programmes, you know, especially, you know, programmes, you know, locally and nationally on, you know, tackling stigma , you know, in terms of health promotion. You know, and I think we need to continue investing in it because without that investment I think, you know, you know, all of us, those professionals who are working in it can of course do so much. 

Unless there is more and more, kind of, you know, large scale initiatives around the country, locally and nationally, you know, we will, you know, we will, they'll always, you know, in terms of, they will always have difficulties in making mental health a more' in terms of, in order to kind of make mental health less stigmatising, you know, of course we have a challenge on our hands, we cannot, you know, overcome with, you know, within a few years. 

And of course the message to professionals is of course perhaps we ourselves need to challenge how we, you know, if it may not happen in my lifetime but maybe in 50, 100 years maybe through the Royal College of Psychiatry with the government, you know, maybe, unless we change how we, how we use words like mental health, you know, we will always have this stigma. So of course one of the ways would be to start, you know, to rethink, that debate probably is happening, and it has started happening, how long it will be, you know. So unless we ourselves as professionals, you know, find our, a different alternative way to describe mental health or mental illness, you know, we will, we won't get rid of the stigma.

You know, So yeah, it is a kind of, it has to be addressed at that, very, you know, at a level which is, you know, governments and large, you know, powerful bodies collectively can do. And sometimes perhaps it's more difficult because there is a vested interest by, you know, whether it's the pharmaceutical companies or the Royal College of Psychiatrists to maintain that. You know, so we don't know. You know. But so it's kind of contradictory on one way, you know, in as much as we want to, you know, work, tackle issues, you know, to be less discriminatory, you know, there is a vested interest by certain sectors of the economy so we don't know which side wins to an extent. You know, all we can do is, we need to make efforts collectively otherwise, you know, we, you know, we will be in the same status quo that we're in today.

 You know, so however much Shift is trying to, you know, tackle anti-stigma, you know, and the message is very slow because, you know, when look at the whole health economy, you know, in a budget of, you know, nought point nought, nought, nought, you know, '2 million in two years or three years is a drop in the ocean so to speak. 

You know, similarly with public health, mental health promotion funds, you kn
 

Imani says professionals should make themselves available in the community to reduce the fear and...

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Imani says professionals should make themselves available in the community to reduce the fear and...

Age at interview: 48
Sex: Female
Age at diagnosis: 47
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I think that the whole spectre of mental health has, in the media especially, and I know that we blame the media for lots of things, but I think there is a level of responsibility when they are impacting on so many people's lives in just one go. Mental health isn't something that means someone is going to lose control and smash the place up. Mental health can be' mental health can be where it's almost as if you have been unplugged. And it's something that everyone at some point in their life will experience. But if we keep dressing it up as this horrible, dark, uncontrollable void in which you get totally lost and you may never find your way back again. People will fear it, and because they fear it, they will also fear people who carry that label and so I think it would be really brilliant if health professionals could make themselves available to community groups, church groups, schools, mum and toddler groups, everybody, on the radio and you know, blow this thing wide open so that the people who have family members at home, who do have a chronic mental illness they won't fear any more seeking medical advice. They'll feel open, they'll feel welcome. And they won't feel judged.

If they, if the health professionals can, even make a commitment to do one session per month somewhere for free, that will help to change the whole face of mental illness for everybody including the medical professionals themselves.

 
It is hoped that new government programmes for mental health will improve access to services for minority ethnic communities, but the approach is questioned by many BME mental health campaigners and it is too early to tell whether it will be effective.

Last reviewed September 2018.

Last updated September 2015.

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