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Mental health: ethnic minority carers’ experiences

Services in the community

Many people with mental health problems and their carers are helped by services in the community instead of - or in addition to - doctors and hospitals. Such services include Community Mental Health Teams, housing officers, the police, social services and others.

Community Mental Health Teams 
In addition to psychiatrists, Community Mental Health Teams consist of Community Psychiatric Nurses (CPNs), social workers, psychologists, occupational therapists, and others. Usually each patient has a 'key worker' or 'care coordinator' in the team who is responsible for getting to know him or her and their needs, and to keep in touch with other services to make sure everyone is working together properly. The team should make a care plan for each person and should involve their families and carers. 

Many carers felt 'tremendously supported' by their Mental Health Team, and people especially commented on the help given by CPNs. CPNs and key workers often visit people at home and many carers said CPNs really helped them with information, with managing difficult situations and sometimes by acting on their behalf. Some carers had been introduced to community centres by the CPN. 

 

The CPN helped when Gou's son had trouble with the police.

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The CPN helped when Gou's son had trouble with the police.

Age at interview: 72
Sex: Male
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I feel more sorry for my two sons, now, because my elder son always says, “I want to change my name”. “I want to change my name, because every time I tell somebody my name, they call me a Chinko”. You see? I say, “it's OK”, I said, but when you're young you get angry. But to me, I'm so used to it, it's nothing any more. But then again, I feel so sorry for them. -I don't know, but then for my second son, walking down the street one day, somebody came and spit in his face. He turned around and hit him, and I think he got, -the police arrest him or something like that. And that night, a policeman came to the house and he said to me, “I want to see your son”. And I say,”yes, sit down”. And he asked my son, he says, “what's your name?” Samuel. And he looked at him. “What is your Chinese name”. “Samuel”. “No, I want your Chinese name”. And he was furious. And he got the pen and whatever, notebook or something. “I want your Chinese name, Chinese name”, he kept emphasising. So finally I say, “excuse me sir, excuse me sir, his mother is Irish. He doesn't have a Chinese name”. Then the next day, his CPN came. I told his CPN what happened, but his CPN is so good, his CPN said, “don't worry, don't worry, I'm going down to the police station with him and I explain everything to them”. And he sort out everything. -Even name you can have problems, you know! So just, -to me, this is so very hard.

Others felt that teams initially had not supported them much as carers. One man said that while the CPN came to give injections, she provided little information.

 

Initially, Nick got little information from the CPN.

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Initially, Nick got little information from the CPN.

Age at interview: 74
Sex: Male
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The CPN popped in and out having given the necessary weekly injections. She was pleasant but told us very little. She refused to discuss anything about our son unless he was present! We now know that she should have done something about counselling etc and pointed us in the right direction for support. It was only after a couple of months that we heard about a carers' support group in Wimbledon purely by chance.

One carer said that all her CPN gave her was a tape of John Cleese talking about living with schizophrenia. A couple of carers found it frustrating that CPNs could do only what the psychiatrist told them to do. Another woman said relationships broke down when a social worker in her father's team wanted to section him when he was physically very ill and she did not think he should be moved.

Some said people with mental health problems and their carers don't always know what the Mental Health Teams are meant to do. Some also felt that while the staff can be highly educated 'they need practice, not only theory' to be able to work well with people with mental health problems and their carers.

 

Amar says people with mental health problems are not told of their rights to have assessments and...

Amar says people with mental health problems are not told of their rights to have assessments and...

Age at interview: 51
Sex: Female
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Yeah, and also information for the person with the illness in simpler forms and also yes, I know there is the various Acts and people have rights, but people are not always made aware of their rights and not always given the assessments, yeah? And I can illustrate from my mother's case, she may have seen a psychiatrist, or the CPN for 20 years -she didn't have a care plan, she had assessment, well she didn't know she had assessment, I didn't know as a carer and I worked in the profession some time. Yes, she had assessment nobody made us aware. She didn't have a care plan until recently, because of different Trusts and the different ways of working. Only now she is in the [name of health Trust], only now she's got a care plan and that care plan didn't even acknowledge me as the carer, even thought I pointed it out.

Do you find that it's'

I find that and because I work in that area and I teach and there's all these bad practices and, you know, clients and carers are not getting the deal they should be getting.

 

Agnes did not think her daughter's key worker was fair when filling in a housing application.

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Agnes did not think her daughter's key worker was fair when filling in a housing application.

Age at interview: 50
Sex: Female
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One of the people who she works with is her key-worker who is supposed to fill out the form for her. So he fills it out for her, but he fills them out that only allow her to get little points. He just made her get very little points. For example, she can get 500 points, he made her only get 50 or 100 points which means her chance of getting a council house is less likely. At the same time my daughter called up the community, it's the CRP, how should I say it, head of council house ah I forgot what it is called, I will tell you later. And she said, she did not come up with this suggestion, she asked staffs in the association 'Could he could fill in the form for her as her key-worker would not' and this is before he actually filled it out. They said, 'We do not do this, you need to find your key-worker to do it'. They then called up her key-worker and ask why he did not fill in the form for her and he said 'What. When did I say I would not fill in the form for her?' -saying stuff like that. My daughter was not trying to complain but she wanted someone to help her. When my daughter came back, he went to shout at my daughter. 'How can you call this association and say I would not fill in the form for you?' and my daughter 'You really did not fill in the form for me, I want to ask you to fill in the form for me and it is your responsibility to fill in the form for me but you would not fill it in for me'. He then took the form and filled it out, filling it out so when she should be getting many points she now gets little points like normal citizens.

Professional home carers
Social services are responsible for organising respite care and professional home carers for those who need it. They do this by buying services from care agencies who employ home carers.

Some people with mental health problems need home carers to help with personal hygiene or practical tasks such as laundry and cleaning. Some of the people we talked to had home carers coming in three times a day. People were grateful for this service and some said it was reassuring to know the carers would come and 'keep an eye on things' when they were not there themselves.

People said that some home carers are great and go 'beyond the call of duty'. Even so, having 'strangers' coming in to your home several times a day can 'be a disruption to life'. The constant change of staff made it difficult for carers (and those being cared for) to get to know the home carers.

Not all home carers are equally good. Some people said they needed to keep an eye on how they carried out the work and 'keep a mental note of things' that are not done properly. One carer felt that the quality of the service had deteriorated after it was privatised. 

 

The home carers are helpful, but he monitors their work and has complained when things are not...

The home carers are helpful, but he monitors their work and has complained when things are not...

Age at interview: 63
Sex: Male
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Then the carers from social services come three times a day, in the mornings they come along, wash her and everything, clean her up, they give her the breakfast, but I prepare all the food. Then lunchtime they come along, and they give her the lunch, which -I prepare the lunch and leave it. Night time same thing happens, they wash her, give her the dinner, and put her in bed, and that sort of business. Now when the caring was done by social services it was very good, the carers are paid properly and everything. Then they privatised it. When they privatised it, you don't know who's coming, you get umpteen carers coming and going, you know, and then such low calibre, that although they're given shall we say like one at a lunchtime, they come in, they want to get out in five minutes, right. And I have a lot of problems with them, early days they used to come along, and I leave the food, they try to feed her, then she doesn't eat straightaway, then they quietly throw the food, right. I didn't know about this. So one day when I looked in the bin I saw the food, I said what's this, then I read out the Riot Act, and tell them 'look if you do this, well obviously I'll take it seriously'. Then two carers that come and deal with my mum, because she's frail, this, that and the other, then they tried to, then between the carers they'd have a little agreement, one will come, other won't come. One will come for the first half hour, other will come the next half hour, and also they are, -caring company also tries a bit of tricks. So when I found out, I read out the Riot Act, and I wrote to their head office, saying that look if anything happens to my mum, if she gets hurt or anything I will hold you responsible, so I wrote a letter to their company secretary, and Director of Social Services, and to the caring company. So I had a lot of battles to fight out with them, and then eventually now I got two, -some carers who are OK, so I'm a little bit happy, but still I keep an eye on them, and that sort of a business. So, I feel sorry for people who have nobody to keep care, you know, keep an eye on them, there are people living on their own, and the carers do a bad job, you now, they couldn't be bothered, they may even throw the, what do you call, medicines away and everything, and -nobody to speak up for them. And OK they may have their relatives or somebody, and then they said, oh they said when somebody starts complaining, say, 'ah it's the old people, the usual thing, they're complaining, they don't want to know', and that sort of a business.

 

She finds some of the home carers very rude to her aunt.

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She finds some of the home carers very rude to her aunt.

Age at interview: 65
Sex: Female
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So we have two carers now, who come, with the hope that while one carer is doing the cleaning, the other carer holds her hands. Now, they never seem to hold her hand and all I can hear is, 'can you put your hands together, stop hitting' and the other carer will say, 'you hit me, I'll hit you back'. Now she is, -lost her mind, but they will go on and on about it and it's sad, because my aunt gets very worked up and with that, I get so worked up because -what I don't understand is, that they know this is a helpless lady. Because the next minute, she will say, 'thank you darling'. Now, anyone can see she's lost her mind. Now, one instance of the crudeness of the people who come to her, it is something I don't even use the word 'you bitch' or 'you cow', because to me it's not ladylike at all. 'But the other day, -about, -say about a month back, this Morning Carer, who always comes and always, -she's good at her work, but she's very rude to my aunt. She said, -my aunt asked her 'what are you doing'? She said, 'oh I'm cleaning the shit off your bum'. Now that was so rude to me and my aunt said, 'but who looks at my bum'? But what I meant was, I'm just seeing this meaning that the crudeness that comes from the people is something so difficult to put up with, because these are hale and hearty. They have their minds, they have the blessing of their good health and yet they talk to my aunt like that. That is something which is so, so difficult.

People said some home carers 'lacked respect' and 'bedside manners', that they would come late, cut corners, not pay enough attention to the needs of the person who was unwell, and some even talked about neglect and abuse.

 

When the home carers left their aunt in her own waste, Indira and her cousin believed it was a...

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When the home carers left their aunt in her own waste, Indira and her cousin believed it was a...

Age at interview: 65
Sex: Female
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The next day there was another Indian girl staying here while I had to go out. Now this girl came correct at 5. The second girl came at 5.25. She did not reply to this girl when she said hello. They came at 5.25 and by 6, 5.40, that is just 10 to 15 minutes, they were out of the door. They didn't talk, they didn't say 'we are leaving', nothing. Now, this girl is new to the place. She was doing me a favour by sitting with my aunt. She just, -and recorded everything and went. I so happened to come at, -they left at 5.40. I so happened to come at, I'm sorry, 6, yeah. I came back at five past six and whenever I come back, my first job is to look at my aunt. So I charged into the room and got such a foul smell. So I said 'the lady has done a big job, I can't wait till tomorrow to change her'. My cousin was there to help me, so I said, 'please help me'. So when I pulled out her coverlet to change her, I found a big lump. She has a knee divider put, you know, to separate, -a three pronged sort of gadget- to separate her legs, so they don't stick together because of her paralysis. I found a big lump of, you know, her mess stuck onto one part of, the right side of that leg divider. Another big clump of it on the sheet where my aunt's tie was. Luckily, I had come soon enough or my aunt goes, she's, -her right hand is hyperactive at night, she goes tapping wherever she can, taps her eyes, ears, wherever, her body, everything. She hadn't had the time to tap over there. So I came in the nick of time.

My cousin phoned up the home office and said, 'I want someone to come right away to check what, how the carers have left her.' So the lady said, 'I'll get someone to you'. Somebody did come. Now that man said, 'I'm sorry there's nobody here that I can send'. So my cousin said, 'in that case, I would have to call the police and make an official complaint that this is how my aunt has been abused'. So the moment he said police, he said 'OK, tell me what it is and I'll take the matter up with my seniors tomorrow'. So my cousin explained everything to him and I had to clean the mess, because I didn't have, I don't do photography, I don't have a camera here, but I had to clean that mess, because I needed to do it. But I wrote, -then my cousin wrote a, sent a letter again, saying that 'please investigate this or I will take criminal, I mean, I will take action as criminal assault', because it was nothing less than an assault, because the. You see, she was fully dressed. This is evident that it has been placed there after she was fully dressed. Now how can anybody do such a thing? They don't like me, fine. They need not come to my house, just as I have a right to say, 'don't send so and so'. They have a right to say 'we don't want to go there'. So why come here and expose my aunt?

Several people had complained when things were 'not good enough' and had insisted on getting home carers they knew and trusted. Others said 'you are fighting against a large system so you can't win' and had decided to learn to live with a poor service.

People did have some sympathy with the lot of home carers, saying they have a boring, 'dirty sort of a job', that they are not always trained properly and are paid 'peanuts'.

 

Anton says that home carers' jobs can be unpleasant and they have poor pay and working conditions.

Anton says that home carers' jobs can be unpleasant and they have poor pay and working conditions.

Age at interview: 63
Sex: Male
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Yeah, well I thought when you're caring for somebody, for a start the government is saving thousands of pounds, like if she went into a home it would cost them quite a lot. So I thought that you will get a lot of support, but I, well, but at the same time, although they give support, it is the people whom they employ. Now the carers get paid '6 an hour, they don't get paid for travelling time, and lunch business and everything, so after they've finished they've got to go somewhere. And they are not guaranteed the hours, right, so if you pay them peanuts, you're not going to get a good calibre, right. And then people don't respect, -well not even a lot of the people who are, -ill people, -they don't respect the carers, they say, 'oh they have come to do, -look after me', and also it's not a motivating job, it's a dirty sort of a job, clean and this, that and the other. So they are treated like shit, and at the same time, -and some -obviously when they deal with ill people, old people, they are not best of the people to deal with, right. So they get a lot of hassle, and the carers as far as they consider, oh I'm just doing it for the money, and they want in and out, you know, and they also try their tricks, yeah.

 

She says home carers need more training.

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She says home carers need more training.

Age at interview: 65
Sex: Female
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So my biggest problem is the carers, I feel, must have some sort of training. I feel the carers who come here, they are taught to use the hoist, but they are not taught anything about illnesses, about the minds of old people, how it hurts old people. Even the fact that you're talking over them, can hurt the old people and mentally disturb them. There's no training at all, as far as I can see. Absolutely no training. So my biggest problem in this whole thing is, I have this problem of the carers. And how to put up with it, because I know for them also, it's difficult with my aunt fighting, pushing, shouting and all that, but can't they at least understand this is a helpless lady? So my life is really very tough.

Police
Many of the carers had dealings with the police when the person they cared for went through a crisis, was sectioned or went missing. Some said the police are 'nice and supportive'. Others found the police less helpful and said 'they don't want to know, they just want to get them away'.

People said it is emotionally hard to have to call the police about a loved one. Some had to call the police because of 'gaps in the system'. For example, if a person with mental health problems has been drinking during a crisis, the mental health team can't go to their home, and calling the police may be the only option. One woman had been told by the hospital to call the police because nobody was available to give her son his medicine. However, the police said they could do nothing unless he became violent.

 

Leah was told to ring the police because no one was there to give her son his injection ...

Leah was told to ring the police because no one was there to give her son his injection ...

Age at interview: 62
Sex: Female
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I remember once, many years ago and I am not sure which year, he was getting to have injection but it happened… On Friday, I phoned the health centre to make an appointment for him to have the injection, but the health centre said the nurse was not there. I said to the receptionist that my son must be taken care of, if there is delay he would relapse. But on Friday it was said there was not people for the injection. I called on Thursday, and on Friday they said no people were there. My son could not receive the injection so on Saturday night he became emotionally very unstable, spoke chaotically. So I immediately phoned the hospital to seek help, and hospital asked me to call police. I said… So I listened to them and I called the police, but the police said if he has not destroyed anything or hurt anyone, they will not handle this. I then said to the police, if they were waited to collect him until he hurts people it would be too late. I said to the police “if anything happens then it is not my fault”. The police said “I know, I know”. Then I called the hospital again, the hospital gave me the social work, the social worker, the emergency social work's phone number. I called, on Saturday night, I called the social worker and I told the social worker the whole situation. At that time he lived separately. Living separately sometimes I found him speaking chaotically. He spoke chaotically on the phone and when I went to see him he was chaotically so I urgently contacted the social worker. The social worker told me to wait for him at his door on Sunday morning 10 o'clock, and wait for the social worker to ask him to open the door.

Some carers said it is wrong that people with mental health problems get into the mental health care system via the police and criminal justice system. They said that services should be trained to recognise mental health problems instead of 'shoving them into prison'.

Other services in the community
Carers were concerned that other services in the community lack knowledge about mental health problems and that staff don't receive mental health training. People made such comments about supervised or sheltered accommodation, housing officers, job broker services, and crisis phone lines.

 

When living in a supervised home, Nick's son managed to avoid taking his medicine and relapsed.

When living in a supervised home, Nick's son managed to avoid taking his medicine and relapsed.

Age at interview: 74
Sex: Male
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Yeah, it is sheltered and supervised. But so they had the responsibility to supervise that he take his medication. That was one of the conditions he was staying there. What he used to do is quietly put the time back and back and back with them by saying I'm watching this and I'm watching that on TV. Finally it ended up that he was not taking the medication. Those people didn't know the importance of taking medication. They weren't told. I had warned them that if he doesn't take medication he will become violent. But yet an enquiry took place, they had told the council person who were enquiring, because this building was under the Council, that they were not aware that he would be violent. They want to cover themselves I suppose. But I pointed it out in my letter and gave copies etc, such a letter sent such a date to the supervisor, or manager of the place that my son could get violent if he doesn't take his medication. And even, more recently when it happened about a year back, a year to 18 months back, medication again, they were all surprised why he started beating people up. Then I went on the web site and I found that a reaction to non medication is called, what is it called? Reaction? I've forgotten the words. It is a sort of a violent, they get an episode.

Like a rage episode?

Yeah, which is worse than an ordinary episode, because the medication itself creates that sort of psychosis. It's called a rebound psychosis.

Rebound psychosis.

That is what happened. And it happened twice. And the second time he beat up virtually everybody inside. He went inside a ward. And he just thrashes it, he gets up, walks around, sees anybody near, you know, hits them. And still he was the one of the most docile blokes' he wouldn't lift a finger to anybody. So that is what happened. Now since then we've been looking after him. Now it's a little better at the moment, he's still on the ward, still under section because the last time he beat somebody up.

 

Tina says the ability housing officers are not giving her clients the support they are paid for ...

Tina says the ability housing officers are not giving her clients the support they are paid for ...

Age at interview: 59
Sex: Female
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The services should listen to carers because carers are more close to the client, and the client, -the carer knows what the client and [his or her] everyday needs, -that way they should help the client. I saw that chap, he is living in ability housing and the [professional] carer who looks after him she doesn't go and look after him at all, neither she cares, -his own client- they don't phone, at least they should phone once in a day that 'how you feel and how you are coping, how do you look after your day to day routine', but it's nothing like that. So when the CPN is visiting and asking 'has the ability housing carer come in to visit you or nothing', that time he says 'no, only my personal carer'.

His relative?

His relative, 'she looks after me, otherwise no-one else, neither she phone or nothing'. And that's why I feel sorry for my client and say that, why the authority doesn't step up into it and find out that you are having the money for nothing, and the girl, -they should take the paper to sign, -the client, -that you are looking after them or not day to day in a routine' It is part of the government services, it's the local authority is in charge of them, and they don't look after that way. I raised those issues with the CPN, but it's -nothing happened because CPN can't do anything because the health authority is a different thing, and that supporting care thing is different thing, they said.

So the -your client is not receiving their...

Any, no, should have to receive that from the authority, he did not have any support from the ability housing office. So that's the one and other bad thing, and the authority doesn't know anything and I think then my voice is heard to the authority, then they should take all the money back from her, because the government is giving the money to look after them, or care for them, and you are having the care for them and getting money and don't do anything.

One woman was angry that people in services 'don't do all they can to help'. Despite her anger, she does understand that it is hard to work on the 'front line' of services. 

 

Knowing their limitations and regulations doesn't stop Ramila sometimes feeling angry with services.

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Knowing their limitations and regulations doesn't stop Ramila sometimes feeling angry with services.

Age at interview: 56
Sex: Female
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And, I just think, I do it out of love for him and I would have always done it whether I got a penny or not but, -and I don't claim a carers' allowance. Which I, -partly because I think that I work full time and I wouldn't be entitled to carer's allowance anyway, but I haven't even looked at it really. But I do know, I feel angry with agencies because I feel that they bring out regulations and laws and things but they're not really, really prepared to help carers. I've had quite a few experiences where I've, you know, I suppose in the end I'm quite angry with the primary care system, with the GPs, angry with social services and angry with mental health services. I'm angry, yeah, with all the agencies, you know, like pension services, all the people who are front line workers, as well as people who actually make decisions. Angry with them all, and yet I do have understanding because I, in my own life I can, I sometimes have been a front line worker. I understand regulations about confidentiality and all that but it's, doesn't stop the frustration and the emotional trauma that it causes.

Several carers said that services 'suddenly' became available only after people with mental health problems made suicide attempts. 

 

After Agnes's daughter had attempted suicide, housing suddenly became available.

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After Agnes's daughter had attempted suicide, housing suddenly became available.

Age at interview: 50
Sex: Female
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You obviously feel that the treatment system or service is not good. How long has this effected you or been a disturbance to you?

A very long time. Since my daughter had problems. If they changed or my daughter got better I could think they have improved or it is good but there was no improvement except, how should I say it, thank god my daughter is still alive and they have, I do not know why, such a coincident, when my daughter was desperate to have a house they told her to move and since my daughter attempted to commit suicide they had a house for her very soon after it. Did not have to wait for long and it was very near. Why is it, is it that someone has to have a danger of their own life, how do I say it, to do, to do what, for my daughter to do something to damage her health, how do I say it, -self harm then they would take action and do things. You understand?        

Something serious happened. 

Yes, yes serious thing happened then they do something. Like if you do not kick them they would not move, if you kick them they would then move. At first when you kick them they say you do not respect them, if you do not kick them they would not care. Like that, I feel it is like that.


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Last reviewed September 2018.

Last updated February 2013.

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