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Mental health: ethnic minority carers’ experiences

Services and minority ethnic communities

Culturally appropriate services
Many carers said it is hard to 'find your way around' the health and social services. This could be because they were new to the UK, because they didn't speak much English or because they had difficulties with reading and writing. Others said the system is simply too complicated.

Some carers said that there is much more help available in different languages today than when they started caring, and these carers were generally happy with what was available. Many others, however, said it needs to become easier to get interpreters and support workers who can explain to carers how the system works, as well as their rights and options.

 

More help is available now, but when her husband first became unwell it was hard to get...

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Age at interview: 61
Sex: Female
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Yes, I went to the doctor and dragged him over. I couldn't speak English and the children were very young at that time. It was very heart-rending. It was 1986 the youngest child was only 3 years old. I had to look after the kids and I also had to take care of him. What can you do? Years have just gone by.

Was there any interpretation service?

At that time, yes but it was difficult to access the service, not as easy as now. At that time, it was available in our community centre but they were always unavailable. It wasn't very good. Now here are many Chinese and even the doctor would help you to find one. Nowadays, if you need one, they found one available for you. It's easier now. It was really hard in the old days. The children didn't speak English and they were little, all were very young. Now, if no translator is found, the children can help. Ok, la.

People from different cultures need different things from services. Sometimes professionals don't distinguish between different ethnic communities. One South Asian woman who had a Carers' Assessment (see 'Carers' assessments') had been recommended to go to an African-Caribbean support centre, but they could not meet her needs for services in her own language.

Carers said it is important that services meet the cultural and religious needs of their loved ones. For instance, people in hospital or residential care need to be able to follow their religion by having appropriate food (such as Halal or vegetarian food). Many carers spend a lot of time every single day making sure their relative in hospital gets appropriate food. For some, personal care (such as skin and hair care) is an issue too.

 

Tina says the meals in hospitals don't suit a Hindu diet (played by an actor).

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Age at interview: 59
Sex: Female
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One client -he is Hindu religion and the family is also Hindu, but I speak to their mother and say that, 'look, in the hospital they won't get food that they require, but whatever is the availability and if the child wants it, help them'. Because over there they won't get enough food, the food they provide there, the timing is very bad, early morning 7 o'clock, 8 o'clock to 10 o'clock they give the breakfast. Then 12 o'clock they give the food like a lunch break, lunch, and 5 o'clock the dinner. The 5 o'clock dinner, after that they don't have anything only they put, -and after medication, they give the medication 5 o'clock after or about 5. After the medication it's about half an hour or hour the appetite is open up for the client, and those people get hungry like anything, -whatever they can have it they can have it. Because that is the effect of the medication and they put only the bread and butter, or not enough milk or sandwiches.

And what about clients who are vegetarian, they don't eat meat?

No, they don't get any vegetarian food, the only they get is like boiled vegetables, not properly -the vegetarian food at all. So when the client's family they bring the food then he can have it, otherwise they won't. So if they are strong religion minded it's really bad for the religious people there. But funny enough that my client he is a flexi one, the only thing -he doesn't have any beef, otherwise he's having all other food, and funny enough he gets fish and chicken so he can survive that way. But the portion they give is very little, like a little baby's having food, one scoop is not enough for them.

 
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White British professional carers don't look after her sister's hair and skin properly.

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Age at interview: 42
Sex: Female
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So it -definitely, I think it would have definitely been different if I was white and my sister was white in some instances and maybe somebody might be saying, well no, that's not true and I can say well it would've been different specially, even just the basic stuff like her care, her health care, eh, her care for her hair and her skin and those things. When those things are not even taken into consideration and I have to be saying, well this needs to be done and these things I bought for her and she needs to, you know, her hair needs to be looked after. You go back months later, how could you go back months later, can you imagine it and somebody's hair has not been combed. Now you wouldn't get up every day and not comb your hair, and stuff like that and yet she's got money there to take her to do this and if, if… Their excuse was, well she, sometimes she has a tantrum and blah, blah, blah. Fair enough' Bring somebody in to do that. There was always some excuse why this wasn't done and that wasn't followed up and why this product wasn't bought for her and that stuff so that alone tells you that race has, it is different, it is different, so I guess that kind of answers that question.

Others said interpreters should be skilled enough to help the person with a mental health problem to understand better what is happening to them. Many thought that health and social services should learn more about what people in different communities need. Some felt that having a GP or worker from their own community helped because they would better know what kind of support to give. Others thought the cultural background of workers didn't matter as long as they listened and were willing to learn and to be flexible.

Many carers said that voluntary and community organisations are often good at providing culturally appropriate services. Since many of these have short-term funding they may not offer a long-term solution.

 

Nita says voluntary services are best at meeting individual needs, but funding is an issue.

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Age at interview: 46
Sex: Female
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A basic understanding of people's backgrounds, and one size doesn't fit all, so not all Muslim people will have the same issues, not all Hindu people. And it's like taking each person on their face value, asking them what their, asking them on a one to one what it is about their lives that needs to be honoured. And it could be their language, it could be their religion, it can be their, like food, dietary, and it can be about their sort of take on life. So you can't have a package, you know you can't say well this is a package that's going to fit all BME carers, it's about tailor making, you know pockets of your service delivery, and trying to make people happy, or support them in that kind of way.

And what do you think are the main things that need to change, for that to happen within the services?

I think having workers, having more workers who have an understanding who are in mainstream funding, who don't have to worry you know, about their funding, who have the support of an agency to, to support what they're doing. A lot of the work that's being done for BME carers is being done through the voluntary sector, it's time limited funding, workers are part time, and they're just good enough, there needs to be a more well thought out approach to carers.

Communicating across cultures
Many carers reported no problem talking to workers in health and social services (see 'Support from carers' services'). However, some felt workers need to learn to listen and communicate better.

Some said those working in services lack openness and respect for people from a different culture and are not always willing to listen. Sometimes 'shutters come down' when there's a challenge. One woman felt that when you belong to a minority culture 'no one really wants to know you'. Another said she didn't expect services in the UK to know much about her culture, but she had hoped that they would be willing to listen and take her needs into account.

 
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Aiko thinks services should be more open minded and listen to people from different cultures.

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Sex: Female
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I am not sure. If service providers had some cultural awareness training this might be beneficial for all of us to communicate better. I never actually expected to, -this society to fully understand about my culture, because the Japanese are such uncommon people. But I would expect people to be more open minded instead of, like -how can I say- the professionals have some training's, and then their book taught to them one to Z, A to Z. And I don't know there's A to Z, but if they can be a more, just a bit open mind, and try to listen to what I'm saying, and the real meanings behind, I think we can have a better communication. But often I found out they have a shutter in front of their face, and the things becomes complicated, or if they cannot understand, or pick up those word from their own dictionary for example, they tended to just, -and stop listening to you. That point I found it could be because of the, there's a cultural, -lack of awareness to each other, I don't mean because I am Japanese, they don't understand. It's not just the nationality I think it would be the same way to everybody, yeah.

One man said it was difficult for people from minority communities to speak their mind about services. He had often been told to 'go home' to his country of origin if he was not satisfied. Others talked about how service personnel are often unaware of the importance of cultural differences and 'don't have a clue about how we live and express ourselves and how we do things differently''

 

Elaine talks about how she felt when the social services wanted to section her father (played by...

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Age at interview: 60
Sex: Female
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So I got my dad's stick, we left the ward, walked along the corridor and I said, 'Dad, I'm taking you home'. I mean, I felt like I don't know, like a sort of fugitive. It's just like, like a fugitive. Like, it's a whole, some real deep rooted ethnic feeling came up, because obviously my ancestors were slaves, as I said earlier. The idea of someone being kept, someone I cared about being put somewhere where I knew it would be detrimental to them was like unacceptable.

But there's this feeling of losing freedom really came up because one of my, an old family friend came to visit my dad once, a couple of times, on the psychiatric unit and I said to him about this whole thing about freedom and he said, 'oh you don't need, you don't need to tell me and we can't really put it into words but we feel it in here'. Because I felt like, well it wasn't a feeling of a threat, it was a threat. It was a threat to my father's wellbeing. He was, his freedom was taken away and my, -I felt like my, my freedom was temporarily because I just got boxed in with this whole thing about, you know when I said about wanting to get my dad out the window. I mean, that's desperation thinking, isn't it, to get away? And so there's this, it's like 'oh these white people are holding us' so I hadn't, I'd never really had it in such an intense, deep sort of way before about a feeling of yes, I'm different. Yes, my father is different, our background's different. And I've read about it, I've read where people from certain ethnic minorities who have been persecuted, you know like Jewish people, Gypsies, when they experience a trauma they can experience it on a much sort of deeper level than people who haven't been persecuted over in their background. But to me it was like, well my father, -mental health, my father didn't have mental capacity so therefore he had less rights and he couldn't speak up for himself so his daughter is trying to, attempting to, and I'm alienating myself minute by minute from the professionals and they weren't actually providing, they weren't providing anybody for me.

Experiences of racism in services
Some carers said they had never felt discriminated against by services because of their race (i.e. racism). Others did not want to discuss this issue. A few felt there was racism towards themselves or the person they cared for. People talked about being looked at or talked to in disrespectful ways. One carer had been told that his son's problem was that 'Asian parents are over protective'. The son was later diagnosed with schizophrenia.

 

Nick lost confidence when he was told that his son's symptoms were the result of his parenting.

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Age at interview: 74
Sex: Male
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That would have been after I saw the private psychiatrist, privately, and before he tried to kill himself there was an interlude where we were, my son was a patient in this local community mental health team. The first doctor who saw him was a fantastic man. He knew what he was talking about, but it was his last day in the post. So there is another person who came along. Then of course, same sort of situation took place, where I gave written notes to the senior house officer who saw my son. So she took a look at the notes, looked at me very accusingly and just said' 'wait there, I'll call you later'. Went upstairs with my son, there was a student, medical student with her, came down 15 minutes later, she says 'you Asian parents are over protective, there's nothing wrong with your son, it looks like you got the problems not him, send him back to University'.

So their explanation there was your Asian background basically?

Yeah this is the thing because later on we analysed this and this is, that is where the decline took place, because it also undermined my confidence in myself. To think that two -one senior consultant and this senior house officer- both gave me the same answers to a question, that's been bothering me and my wife, -'something must be wrong with me'. So from that' they didn't tell me that you could have a second opinion or go to somebody else. Nothing of the sort, so we didn't know how the system operated. From there onwards we didn't seek any help, and my son wasn't given any medication of any sort, nothing at all. Neither did they warn us what to watch out for, what he will do, what he won't do. These are the normal things any people with any common sense would do, but this wasn't done. So we didn't know where to go, we just let our son be at home until that dreadful day.

 
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She says professional home carers make remarks because she is Asian and Muslim.

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Age at interview: 65
Sex: Female
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I have felt it that they do have some sort of dislike for Asians, and it has come through to me. Not with the whites, but with the coloured carers, I'm talking of the African or the Jamaican or whatever, Caribbean. They do have that in you, that they don't like India, they don't like Asians, because one carer, you know, when the war was going on, and she'd say, 'oh that bloody Saddam' and 'all Muslims are'. Now everyone knows my surname is [name], so they know that I've got something to do with the Muslim, you know, the name is Muslim. So they would make it, 'because of these damn Muslims, the world is suffering today'. They would make it a point to say that. So then I stopped putting on the television while they were there, because I said, you know, what they say is their business, but I don't want to be a party to it of saying those bloody Muslims. It's none of my business. If they are Muslims, they are Muslims, that's it. So, you know, I have felt it they don't like it. They don't like 1), that I'm Asian, 2) that I have a Muslim surname, so I've learnt to stand where I am. I don't bow down to any of them. That's it, but it's not easy, because you're facing it day in and day out and it has gone on for the last four years.

Some said that it can be difficult to point to specific examples of racism but they felt that racism is 'always there'.

 
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Ramila says 'you just know' racism is there, even if it is difficult to explain.

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Age at interview: 56
Sex: Female
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It is very difficult to explain racism. You know, you know, -which is very silly thing to say because people who never experienced, or who don't know about concepts of racism they say, how do you know? But you just know by, you know, sometimes they're spitting in the street and then OK people say, OK if I'm passing by people, even these kind of yobs they will spit. But you know that it's because of your colour, your skin, your outlook, they've, that's because of that, you know the looks, the glances they give, the way you're spoken to sometimes. So it may be, I mean, I don't know, now that you ask the question. That maybe the GP was answering equally in such tones to all his other patients. But, you know, to me it was more sensitive. I didn't like those tones. I didn't like the lack of time that was, you know, given but I, -and lack of explanation, and the kind of feeling that you, that I was being dealt with just because it was his duty to deal with me but, no more and no less. I would have preferred kindness more, but, -and so I don't know but it was just a feeling that they were being racist completely. They were very, awful, you know and it wasn't just me. My whole family felt that. And yet we didn't know that we had the choice to change the GPs really.

Carers talked about how others 'assume the worst' of people from minority ethnic communities or think that 'black people are just more aggressive' than white people. Such stereotypes are thought to make workers not listen properly, or even make wrong decisions. People said although this needs to change, it is 'not something that can be changed overnight'.

 
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Sophie says we all notice race, but the problem comes when workers make decisions based on...

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Age at interview: 42
Sex: Female
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We can't eradicate somebody's race and their identity because when I'm sat in front of anybody, the first thing I see is race and nobody can say, well that might sound racist, it's not, it's what you see and you have to identify with that and it's a known fact that we all see that. I can't comprehend with anybody sits in front of another person and say they don't see race, they see a person, that's not true. You see race and then you see a person behind that. So therefore, my experience would have been -if I was a white women- that they would probably have seen white person. Obviously they had misconceptions or their perceptions I should say, of what they think about me as a white woman would have been different than probably what they'd think of me as a black woman. It happens, and don't get me wrong, I'm not saying everybody thinks that way and it's always about the race issue first and that you're going to be treated badly all the time but it plays a significant role, it plays a significant role because I think unfortunately there's lots of people who are not aware of culture, differences, you know. You shouldn't be embarrassed about that because we live in a society where sometimes we are alienated wherever and needless to say I think lots of these people who are in that job come from a white middle class background and they've probably never come into contact with people from BME communities unless they've worked in BME communities. So they haven't got a clue about how we live, how we express ourselves, how we do different things so for them, they come in with their misconceptions about how they view people of a different colour or whatever so obviously the way they come to their conclusions and diagnose people will be based on their misconceptions and their stereotypes about people of colour.

Being on the receiving end of racism leads to anger, frustration, loss of confidence and a lack of trust in services. People with such experiences may even stop using services. Some carers said they try to ignore racism, rise above it, or even play along with it to diffuse tense situations. Some of those who had lived in the UK for many decades thought there is less racism now than there used to be.

 
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Gou has been called racist names and told to 'go home' many times, but he avoids confrontation.

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Age at interview: 72
Sex: Male
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In Northern Ireland, even in Northern, everywhere, everywhere you go, the same. “You don't like it, go home”. But then again, my answer is, it's not only for me, because there's a lot of Irish people are not well too, and they need to be, you know, concerned about this problem too. But then again for, it's very hard for minority to express their views, because any time a minority express their views, and even my ex wife said to me a couple of times, “if you don't like it, what are you doing here?” I say, “it's not only for me, it's, I turn a blind eye, it's not, it's for the good of everybody here too”. But they take it in a different way. Like I criticise the system and the National Health system is the best in the world, you say, where else you can get a National Health like that? And “you're running down the National Health”, like I'm running down the people that treat me. The idea was completely different from my ideas. I don't know, but six months after my second son, -I took him back here, because both my son always say to me, “they call me Chinky, they call me this, they”, I say, “don't worry”, I say, “I've been called names all over the world. Not only here. In America”, I said “prejudice in every race, not only the Irish, not only-“. The Chinese are prejudiced too. Every country. In America you see the Italian, the Italian will not like the British always. Or the German and all. It's common. Every country. Prejudice not only between the colour, between people, different, from different country. But that's why I keep seeing my son annoyed. I say, “if somebody call you name, just pretend you don't speak English, just laugh”. He has been called names. I just, “yeah, yeah, yeah”. I walk to shopping centre one day, one day somebody say, “which Chinese restaurant you work”? I didn't say nothing and he say to me, “chop chop, chop chop”. And I thought, -I just laughed. I say, “yeah, yeah, chop chop”. I mean, by making fun that way you avoid confrontation.

Inequality and mental health
Several carers had noticed that in some psychiatric wards most people were from minority ethnic communities. Some believed that people from such backgrounds are more likely to be diagnosed with a mental illness, to be given strong medication and to be in and out of hospital a lot (the 'revolving door' syndrome). 

 
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Raye thinks there is racism in mental health services and in society generally.

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Age at interview: 28
Sex: Female
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I think wherever you want to look at this and whether you want to look at mental health or not, especially as a black man, you're in trouble from the day you're born, you know, and you get an angry black man show up in your surgery, you know, there could be a myriad of things wrong but I feel the quickest solution is diagnosis and drugs, that's the quickest way to get rid of the problem as you see it and maybe that does stem from, you know, immigration and people not really knowing where to put themselves and not knowing what to do.

And that's not, -I don't think that's just about mental health, I think that's about quite a lot of things. You see a group of black boys standing on the street together you immediately think they're up to no good. Where does that come from, it comes from stereotypes, where do they come from. The majority of what you see is reported about these people on TV. If the world suddenly flipped and on TV for every black person you saw a white person, and for every white person you saw a black person, you know, I don't think people would be able to cope with that. It's just, there's all the little things as well that perhaps other people don't, don't think about. My name sounds English, I show up for job interviews and I see people and they're a bit, 'oh OK', I'm not what they were expecting. I think it's always little things. It's uncomfortable I feel, and so when you add mental illness on top of that, people don't really know where to put themselves.

Some called this a form of 'institutional racism', which means that organisations (and not individual workers) have failed to give proper services to people because of their race. 

Some said that people from minority ethnic communities are more likely than others to live in poverty, which can also affect mental health (see 'Carers' views: mental health problems & causes').


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Last reviewed September 2018.

Last updated June 2015.

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