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Mental health: ethnic minority carers’ experiences

Carers' advice about carer policies

The work carers do is part of the UK government's plans for caring for people with mental health problems in the community. Most carers agreed that relatives are in a good position to look after people with mental health problems. Some even said that 'if all carers said “I'm not going to care anymore,” the NHS would go bust overnight'.  People thought it was in everybody's interests (services, service users and carers) for carers to get the right support to do their work properly. As discussed below, carers offered advice to those writing carer policies to ensure their conclusions were good ones. 

Strategic thinking
The government knows it needs to work in partnership with carers. The carers we spoke to said that for this to work well, those planning services need to talk to people in the community in a meaningful way and recognise carers' experience and their wealth of expertise. Some felt that people from minority ethnic communities are less likely than others to be listened to properly.

 
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If carers are going to be partners in care they need information and support.

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Age at interview: 56
Sex: Female
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But the thing is to, -I think the thing I'm quite keen on at the moment is to take carers as partners in care because carers basically spend so much more time, you know. When that person is well and they're discharged, in an ordinary case that person will go back to the carer's house and live with the carer. And so the carers are expected to be professionals all the time, you know, for the rest of the time that the person is with them. So why not give them help and tell them what could help that person, what couldn't, how to create empowerment for that person. Not to give so much caring and not to do so much for that person. Not to spend their whole life, which most carers do, you know, the other person's life become their own but why not try and separate it out? But so,-for professionals to know that confidentiality needs to be accompanied by common sense really. Like the case where I talked about the GP's receptionist saying she couldn't give me the information. But if the common sense had come in, then why would somebody else, a total stranger would want to, want that sort of information anyway? Who would even go to that length? But OK, maybe the concern was that the patient might come back and say, why did you give that information? So there is that. But then to also, -to work with the patients and say, it is necessary to give, right from the beginning that it is necessary for us as professionals in treating you, to give, you know, some information to your family, to the person who is giving you care, who is expecting you to, where you will go out and live with, or who will give you support. And whether you like it or not, they need to be given some information which will help you.

However, the carers we spoke to felt that they are 'not always valued' by the government and 'often forgotten about' by local services. Some said that carers don't have much of a voice in policy decisions. One carer thought a national register of carers could help to get 'the work we do recognised' and included in strategic thinking.

 
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There need to be well funded carer organisations working for carers and 24-hour support services...

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Age at interview: 42
Sex: Female
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Well there definitely should be some form of agencies that are there to help people, specially carers, I've heard about carers association and carers this and that but often they're not funded properly. It's the carers themselves -which they should- that are running this, there's no money there, it's just about, probably just meeting and having a few, you know, weekly sessions each week and stuff like that. They're not recognised, there's nobody paid doing the roles, it's just, and I think wow, there should be a system there that's, somebody can even get on the phone 24 hours a day and say, well you know what, I've got, my son's here and he's having a psychosis moment and blah, blah, blah, can, -what can I do or somebody to speak to. At least a carer has somewhere where they can tap into or you're just frustrated or whatever, -whatever the situation is because there isn't anything there and that would be nice is that there is a national organisation that can help and assist people and point them in the right direction, who they need to speak to about medication, you know, clear, -places where they can understand the diagnosis because often you go somewhere, they reel off all these big words and all this information and it just goes over your head and you feel a bit lame, asking, what does that mean and what does that mean? And often we sit back passively. We do it when we go to our GP's surgery and just take what is given to us and I think no, we have to question things and we'd like to do that. So we'd like an organisation that's there, that can say, well no hold on, blah, blah, blah, this is not how it's supposed to be so therefore you need to put these in place and this is what needs to be put in place to help you help your loved ones. That's what needs to be in place.

Carers need culturally appropriate services (see 'Services and minority ethnic communities'). Some carers thought the government and local services were not sensitive enough to cultural differences. And some people said that the government's strategies for carers should devote a section to looking at the needs of different communities. 

Some said that having more people from different ethnic communities working in services could help. Others said jobs or services aimed at supporting ethnic minority carers should be 'mainstreamed' (be made permanent and paid for by public services).

Listen and learn from carers experiences 
People recognised that it can be difficult to understand how it is to be a carer 'unless you've been in the situation'. To help those in charge of policies and services to understand, the advice from carers was simple: Listen to us!

 

Really careful listening is needed to understand the work carers do (played by an actor).

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Age at interview: 69
Sex: Female
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No, I don't think they were listening, nobody, they weren't listening, they didn't understand what it. Because they don't understand what it's like to be a carer, I don't think they were listening at all, I don't think they were listening, you know. There are a lot of carers out there, there is a lot. Not just with mental illness, both physical illness as well, a lot of carers out there and they weren't taking any notice, you know, they just, they listened, but they weren't hearing. 

I want them to listen more. I would like them to really and truly listen to the voice of the carers. I would like them to help the carers more and do a lot a more as well even the users as well, help them a lot more, God I think they need a lot more help than what they get, I think so.

Encourage them, let their, -oh how can I say it now, -let them, let them feel like they are listened to. Help them in a way that they can feel like this weight, -just take some of the weight from them, you know. For me, as I said, me now I am a pensioner, but thank God I manage, I manage financially, I manage. But there are some carers that need help financially more. There are some that do need financial help and that's one of the things they should help those who really need financial help and support them a lot more. Listen, because when you listen you can understand, you know, if you don't listen to the people, who really experience these things you will never ever understand, you know. And they must listen to carers, help them more, help them, because it's hard work. Somebody might say, oh well it's your own daughter, or your own son, or your own husband, that's true, that is true, but it's, it's still hard work and you need support too you see, you need to be supported as well.

Some carers said they felt those working in services don't always recognise that while for a worker someone's 'case' is part of their day job, for carers 'a case' 'is our lives'' 'we're people, you know, not papers'. Sometimes carers said they felt 'run over' by people in authority. And people said some professionals need to learn how to communicate better with carers from different cultures. 

People said that those in charge of policies and services need to understand how caring responsibilities affect carers '24/7' and that services need to be flexible enough to address 'real life issues' as they arise. The timing of ward rounds suiting staff needs rather than carers, and the need for 24 hour support and for that support to be culturally appropriate were some of the examples mentioned.

 
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Raye describes how caring for someone with a mental health problem requires time and expertise,...

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Age at interview: 28
Sex: Female
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When you see someone, -when my dad's file rocks up someone's desk and they see that I'm his next of kin and then they're calling me about turning off the radio in his flat and then they're calling to, 'have I seen him lately' and 'we're thinking about sectioning him' and stuff like that. We're people, you know, we're not papers and saying those to the people that work looking after them are people, not paper. The stuff that we do that you don't see, like going to see my dad every week, you know, the things that you buy when they're in hospital because they've been sectioned and taken in and you can't get into their flat or whatever and you've got to pick stuff up and, and buying food and things because the food in hospital is crap, they don't see all those things. It's not just it's not a day for us, or it's not like a few weeks, this is ongoing, it's 24/7 and for me with all the checking of the phone calls and what's been said or how are they doing, it's not, you never put that down, it's 24/7, you never ever put that down. I'm at work and I sit there and I think has my dad called, has he asked me for something and-. We're, you know, we're people and we can't, we know for us that have done it for a while, we know what's going on. It's patronising to have someone who's barely dealt with this person before, sit down and try and explain it all to you, if I know, I don't want to be told. There's so much. You don't think about it, that this is something that we do, we don't get paid for it, we don't get any recognition for it. If I need time off I can hardly say it's because my dad's playing up, you know. I have time off from work and I'm temping so it's unpaid and to go to ward round and things like that, and they're normally held in the morning and you ask us to come along and it's I feel like I need to be there but I can't because I've got other responsibilities. It's hard. I don't see why they can't be held at a time when we can all get there. It's probably good if a person's involved and I don't feel that mental illness is something that can be dealt with on a nine to five basis, I find that hard, you know, 'well it will have to wait till tomorrow now because everyone's gone home', so my dad's on the loose for another night then. I think we can help with a lot more than is asked of us sometimes. I don't know how that would work with confidentiality and then doctor, patient, whatever, but I see my dad more than you do. I know what's going on for him. You see him for ten, twenty minutes once every couple of months or so to make sure he's taking his medication. I see him every week.

People also said that if carers and workers have regular communication (not just meeting during a crisis), they could build up trust and be much better at dealing with things as they come up. Some suggested regular meetings, or regular reports from hospitals or mental health teams to carers.

 
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Miriam wants carers and health professionals to have regular contact from day one.

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Age at interview: 51
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So if people are aware right from the beginning as to what's going on and what's happening, give the carers opportunity to, -come back maybe every three months or every four to review things with them, then the trust, there is some sort of trust between the caring team and the carer, and the client themselves, so it's not sort of, eh, -it doesn't create too much tension and problems, whereas if you have to wait until the person is not well and then you'll be phoning and you want help and you don't get it and it brings a lot of situations, because you're phoning these people up, it is too much. So I think right at the beginning there should be some communication and some sort of trust between the caring people and the carers, so that you will be able to move on from there and I'm sure if that happens, because now it's easier for me, if I say that my son is not well, they understand, they know if I'm talking why, and if I say that he needs admission, they believe that my judgement is right, and within the same day they can get him into hospital. But so many people don't get that, you know, because either the mother don't want their son to know that they phone and you know, and it go on and on and on. Before somebody assesses the situation it's gone too far and it puts a lot of stress on carers, you know, not knowing, -I've been having an assessment somewhere that you had to be whispering because the person that is ill is indoors and why can't they give the person a chance, OK come to the office let's talk about what's going on, you know, rather than put them in that situation, that the moment we walk out that will put her at risk because then he's going to be more angrier with her for maybe asking for help for. So it is difficult, but I think with increased communication between carers and the caring teams helps a lot to resolve things and move things on, because the people that I've seen do much better than people who's carers are, -they have good relationship with either the CPN or whoever's looking after him. But if they are not respected and brought in the situation and assisted and supported, they also, we need support as well as carers, we do need someone to listen.

One carer said that how services engage with carers' views should be recorded and checked as part of staff appraisals. 

 
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She thinks the way staff listen to carers should be part of routine monitoring of their work.

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Age at interview: 40
Sex: Female
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So from the very, very beginning I think they should have, you know, when there must be so many forms that they fill in when a patient's admitted or whatever, even GP's or any health appointment, there should be parts on that form where you've got to put, carer's comments or whatever, so your comments are written down. Your, you know, thoughts on what, how it's affecting you and what you've said is acknowledged. And then like I guess, any health professional has to have supervision sessions or whatever, review sessions, whatever you call it, to make sure that they're doing their job properly so that should be on there as well. 'Have you spoke to the carer?' So all the way through the system, you're making sure that the carer is involved. Because at the minute it's just, it seems like it's nowhere. And then some sort of comeback like in these, get discharged from hospital and they don't even tell the carer. Or you're not even told about the meetings, or you're not even told when they cancel the meetings. There should be something on there. Some forms where they tick or what, or however system they do it, on the computer or whatever, and then some comeback for these professionals if they don't listen to the carer, or they don't, you know, speak to the carer, yeah?

The need for education and raising awareness
The government expects carers to do a lot of care in the community. Some described this as a 'half-baked idea' because carers are 'catapulted' into caring without being trained how to look after people with mental health problems.

 

Just as doctors need education to treat a broken leg, carers need education and support to look...

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Age at interview: 74
Sex: Male
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Health service, my main concern, about carers is that, I'd say, supposing one day I used, as example, I don't know is the right thing to do. Suppose you've got a broken leg, would you allow this broken leg to be treated by a nurse who is not trained at all? You won't. But how is it that you allow a person who is mentally ill, you don't know what the hell's going on inside their brain, and you say, send that person to a house and say, tell the mother or father to look after them, without any training whatsoever. Where is the logic in it? I can't see this is, but' it's terrible. Would anybody with any commence sense, educated people, qualified people -medically- doing this sort of thing? I don't know where they got it from.

Carers, there is some things done for the carer, but on the education side of the carer is the most important thing, because schizophrenia is not a short term illness. Because a patient may have to be with the parent or parents, in my case it's twelve years, in other cases it's more. So what education do they need? What is the support they need? Now, when I go to meetings and all' 'you are a carer, what do you need?' they ask. I get so mad. I says, 'you are a director of services, forget that, imagine that you have a son who is psychologically ill. Say he's a schizophrenic or whatever it is. You are a carer from that time onwards, what do you think you will need?' I don't have to say it. It's a common sense thing isn't it? I must know how to look after the patient. I must know what is actually known, what other medications he's taking, what are the side effects. If he gets up at two o'clock in the morning and say this or that, how am I going to deal with? Am I equipped to deal with that sort of thing? These are the things you're going to deal with.

Some people said it is 'common sense' that new carers need to be educated about mental health issues, how to cope and how to access services. Simple things such as information about which symptoms to expect and how to address them, people said, could 'go a long way' (see 'Carers' advice for support and information services').

Some emphasised that carers should help educate each other (and professionals) because they can give advice based on real life experiences. Others recommended more outreach work to let people in different communities know more about mental health and 'how the system works'.

Many carers said that to tackle mental health problems, learning about it should be part of the school curriculum. Some said public awareness campaigns are needed to educate the public and to put the needs of carers on the agenda. 

 

She thinks mental health issues should be part of the school curriculum.

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Age at interview: 51
Sex: Female
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I think raising awareness from schools as well, when they're learning about different life subjects and I don't know which subject they do that now. Making people aware that they look after the stresses and strain, manage their stress and if there are issues they seek help earlier, because, you know, these days life in the western world is fast and a fast pace of life affects people, tension, stress, illness, disease and if people will not look after themselves, they don't recognise, look after themselves with the support of others. They say one in four now, it might be more, it certainly feels it more, but awareness and education, easier access, people from different communities and different languages, also checking people are doing these things. It's all very well having money and workers, but you need to see what you are achieving, it is making a difference and people, service users and carers are involved in auditing organisations and that they are doing it and the people aren't doing' are having adverse effects, that they are dealt with, because it is making' bad impact on individual families lives, it goes on and on, it has a rippling effect.

Resources
Many carers believed that not enough money is being spent on mental health services and on supporting carers. The lack of hospital beds, long waiting lists and the short time professionals had to meet patients and carers were mentioned as examples. Some thought resources don't reach carers because they are not 'ring fenced' and so they end up being spent on other things.

People also talked about how the carers' allowance is not enough to cover the costs of caring. Although the money clearly did not motivate carers, many struggled to make ends meet and said increases in benefits would be a very effective way of supporting carers better.

 

Anton thinks the current carer's allowance is inadequate considering what they do.

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Age at interview: 63
Sex: Male
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Yeah, now what I'd like to say is that though, when you're, when you're caring for somebody it's not an easy job, it's a 24 hour job, and you never know when the job is going to finish. So the, -what do you call- the authorities or health, social services, they must take this very, very seriously, and they should care for the carers, right. They should organise things, they should care for the carers. Now say, -now I, -because of my mum's condition I've got to spend a bit more time with her, so even this part time job, which I'm doing, I won't be able to do that many assignments, so I applied for the carers allowance. You know a princely sum of 50 quid a week, that's all. And then some caveat built in, that I can't work more than so many number of hours, so what do they think, that sort of a business? So they've got to care for the carers, plus they've got to give some financial incentives, money, because they're saving a lot of money, and that sort of business, who better to care for their, kin than their family, this is it! So yeah they're, unfortunately the carers are neglected, a group of people, and because they take advantage, they know they'll do it anyway, even with the 50 quid or without the 50 quid, yeah.

So more support, financial and otherwise?

For the carers, financial otherwise -carers, and then there are some ways, and then if they want to do some study, like correspondence course or something, something, then they should fund them, because they're at home that sort of a business. Possibly give them free bus rides, if they're under 60, so many things, yeah. Because you know because they're caring they're not doing a full time proper job, so their earning capacity is low, yeah. And then organised holidays, and then, like -nice if carers, a few carers can get together as well, swap, -help one another.
 
 

Benefits affect carer allowance which makes it hard for carers (recording in Gujarati).

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Age at interview: 55
Sex: Male
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When the benefit rates are increased, when the Carers allowance increases if you are getting income support then it gets deducted. So you get what you get, you do not get an increase. The costs carrying on are increasing, so if a Carer works then they will not get any financial benefits. If you think that Carers get '48 carers allowance and then increase it by '2 per month to bring it up to '50 then they cut that '2 from other benefits you get. So we do not benefit in any way. So we do not benefit financially. To look after the cared for person, there are expenses.

What kind of expenses?

To take them out there are expenses aren't there? With some of them like my Mrs, if you leave her in the house she is got to get depressed. I have to take her out.

Some people also noted that the government has a responsibility to look after the needs of all of the community. When people have contributed to their National Insurance all their life, the excuse of limited money simply isn't good enough.

 

She says the NHS needs to take more responsibility and not expect voluntary organisations to do...

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Age at interview: 46
Sex: Female
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Well if you want to do something you can do it, can't you? And I think the excuses around funding, or not having appropriate staff, -but there is ample funding. My mum worked for the majority of her life, so she contributed to the National Health Service. You've got, you know, people there who you can train up and make, and give them the opportunity, so you can do things if you want to do them. And I think what happens is, mainstream services at -the National Health Service- it doesn't want to go into that territory. So it gives pockets of funding to a third sector to pick up what it can't do. But the third sector struggles, because it gets into stuff that it can't cope with. For example I used to manage a mental health project, and I had 50 people who would come to use the service a week, and I was the only worker. And I had to do assessments when new people came in, look after the groups, look after a management committee, you know, everything, and in the end I was burning out so I left, but that's what happens in the third sector. I think whatever happens to anybody in society is the responsibility of that society, so the National Health Service has a responsibility to gear its activities around supporting that person.


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Last reviewed September 2018.

Last updated February 2013.

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