Mental health: ethnic minority carers’ experiences
Carers' voice and confidentiality issues
Health and social care workers are meant to involve carers when they give services to people with mental health problems. However, carers' experiences of being involved varied. Some said that carer involvement in services is a fairly new thing, and not all workers include carers' views. Others were unsure about the extent of their right to be involved. Some also said that coming from a minority ethnic community can make it harder to be heard (see 'Services and minority ethnic communities').
Many said that often neither carers nor workers get the 'full picture' because workers don't listen to carers, or they can't talk to them about things covered by patient confidentiality. When workers don't listen to carers, the health of people with mental health problems was thought to be at risk. Having experiences on both sides of the table, some carers working in the mental health field thought that the issue of patient confidentiality should be looked at again.
Miriam says patient confidentiality is tricky when it puts people at risk.
Why listen to carers?
Some carers said that people with mental health problems don't always admit being unwell, they can find it hard to express themselves or to keep a balanced view of their situation. Some carers said the person they cared for heard voices telling them not to talk to doctors, and some hide that they are unwell and present well to doctors.
Carers with everyday contact with the person who is unwell can explain 'how it has really been, the last few weeks' and are 'an important part of the conversation'. This can be particularly important when the professionals don't know the patient's cultural background very well. Carers said that without their input, doctors and service providers may not get the information they need to make the right decisions about treatment.
Sarah says carers recognise signs missed by professionals who don't really know the person ...
There can also be practical reasons for having more open communication with carers, particularly when the carers are the ones setting up appointments or looking after medication.
Ramila got frustrated when she rang the surgery and they refused to tell her if her brother's...
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. I mean, the incidence I remember greatly is when I had to ring up the GP a few, you know, quite a few years ago, and there was something wrong with my brother and I needed to, -yeah, he had gone through a blood test, and I always have to take him to the GP, and take him back and, go home, drop him back, find time off from work, or make sure the arrangements are in such a time that, you know, I can make up the time at work. And there was this receptionist. All I wanted to know was, had the results come back. And she first of all didn't want to answer that. So she questioned me very, very thoroughly. And she just kept on saying it was confidential and she couldn't give me that information. And the whole reason for my asking, -my asking whether the result had arrived was, because then I could make the appointment accordingly. If the results hadn't come, then there was no point in my making the appointment. But she just didn't seem to understand it. And she was so clear that she knew, she couldn't give me any information because it was confidential. And in the end we were both shouting. Well, I was shouting more I think. And she said to me, can you tell me the date of birth of your brother, so then I know you are a carer? And there was all this frustration mounting up that for years I've done this, “why don't you know me”? And would there be a stranger asking such question anyway, and ringing up and saying? But it just seemed so stupid and I didn't want to give, let go of the phone because I wanted to get her, I wanted to be listened to, I wanted to get the result that I wanted, which was to find out whether his results had arrived. And I gave his date of birth but unfortunately what has happened is, somehow in all the years of different departments and agencies, his date of birth has slightly been changed. So the date that we know as his true date is not in the GP's record, or maybe some other agency's record. And I can't be bothered to change it, even now, knowing all these difficulties. So I quoted the right date, and obviously they had the wrong date, and she just said to me, “you don't even know his date of birth”, unkindly. So I, in the end I was defeated, in spite of all my tremendous effort, and I had to put the phone down. And then when I made the appointment eventually, and got time to see the GP, obviously, I can imagine what had happened. There was this receptionist who probably go, -went out to all her colleagues and said, this stupid woman, this horrible nasty carer or whatever, and the GP's all kind of knowing because when I, -the GP seemed to know what I'd gone through because they just shrugged it off. They said, “Oh it's just one of those things”. So I didn't really get to explain my side of things. But then they said that they had now definitely changed it on his records, that I was the carer and so I wouldn't have the same difficulty again ever. And it should have been in place before. So silly little things like that just create havoc in life.
Several carers thought that involving the whole family is the best way to help people with mental health problems and that professionals should find ways to involve them.
Miriam thinks regular communication between families and professionals can help prevent crises.
Experiences of being listened to
Some carers felt listened to by service personnel. Some said that people in voluntary organisations and CPNs were sometimes better than doctors at taking their views on board (see 'Support from carers' services'). Others said the doctors also listened, treated them with respect and involved them fully.
Ramanbhai comes along to his wife's consultations and they meet the psychiatrist together after...
Together, together. Together means, first, she goes in and then I am called in. They will take her interview and then take mine. Afterwards the doctor will find out what is really happening here and what the truth is. I don't know what the doctor asks my wife. When she asks me she will ask in front of my wife. When she sees that things were the same and that these things are true. We want to tell the truth, what is the point of telling lies? What is happening to my wife she talks about honestly to the doctor.
Is it the GP?
No, mental health doctor. Yes. Right now the doctor has changed, its one of ours (Asian). We go together. What they are saying is so far, keep her occupied little by little and supervise her, stay with her and show her as you go along. That's it. That is the way I am doing.
How do you feel the doctor involves you? Is he letting you taking part?
In terms of involvement, I feel, we should know what is going on in our home, first thing, because I live in the house. If the wife knows and I do not know, then that is not right. I feel I should go and find out and know what needs correcting. What I should be looking to improving. This should be improved because I am sitting at home anyway. If there is something that will improve as a result of me going there, there is no reason not to.
Some, who had cared for their loved ones for a long time, said carers are listened to more nowadays. Some said they were 'seen as an expert now' and professionals asked for their advice.
Jane thinks carers today are speaking up and being listened to more than before (played by an...
Did you feel you were trying to speak out back then?
Oh yeah, as I said before, I went to a lot of meetings.
Did you feel that people didn't listen?
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. But now the voices of the carers are being heard more, because they are speaking more. They are speaking more, because I think carers are getting a bit fed up of not being heard, fed up of nothing being done to help them and so now they are coming out and they are talking and they are listening. And I think more should be done for carers, more because it's a hard job. I know the person we care for is our blood, it's our blood, but we need, we need help as well, we need the support too, you know, and it's only now that you find that things are getting done for carers a bit, things are getting done and we hope that it can get better.
Some carers described themselves as having to be 'the voice' of the person with mental health problems because they could not express themselves or because they did not speak English. Some also pointed out that there could be a danger in the carer becoming too powerful in the relationship.
Experiences of not being listened to
Many carers felt, however, that professionals didn't listen to them. Most of these carers said they felt like 'a voice in the wilderness' and that professionals just 'don't want to hear', that they 'hide behind patient confidentiality' or only pay lip service to carers. Sometimes they didn't invite them to important meetings, for example about care plans.
Agnes was told she had to leave the hospital for her daughter's test, but was not told why.
I said, 'Explain to me because my daughter's only having a test, blood test, I don't know what test. I will wait for her to come back, it should be quick. Is there a policy that says I cannot wait or is there a room or any place I can wait, I don't want to leave her.' Right. 'Mrs Lee, you have to leave, to leave' like that. I said 'Explain to me, why I have to leave.' She was like 'You have to leave.' Like that. So I went back to the room and said to my daughter 'I have to leave, the nurse said I have to leave this ward. I do not know why.' She said, 'Why mum?' I said, 'I do not know.' It was raining outside as well, lucky I drove there I can hide there [in the car]] if not I wouldn't know where to go and how long to wait for. So my daughter went to ask the same question as me 'Why does my mum need to leave this place?' She said the same thing 'Your mum have to leave.' Oh my god, you need to explain why and what the reason is. She made me mad.
One carer who came to Britain in 2000 said she initially didn't understand how patient confidentiality worked in the UK system. She had found it hurtful to be 'shut out' of her husband's care. She had also been denied involvement in consultations even after her husband had asked his psychiatrist if she could come along.
Patient confidentiality needs to be explained to people who are new to the UK and patients should...
Too many local authority staff did not recognised about carer at all. Our GP has been always helpful and understanding but mostly I felt useless and being pushed around by the previous psychiatrist and his team. They did not want me to get involved even when my husband asked for this.
That's the, and I still have question about this individuality in this country. Although I understand it's very important, and also patient confidentiality, that is fine as long as it's being explained at the beginning, but nobody did it. It's like, because people talk about the confidentiality and the individual reason, when you first visit your doctor they don't talk about it, you just carry on naturally. So whoever comes with the main patient, carers will be shut out, they would be shut out, and that happened quite a few times to me. And I actually raised a complaint a lot of the times because Jim never refused me to go in into the room, and, -but doctors think, because this is confidential, this is about Jim's problem, I don't need to be with him. And then they wanted to hear stories from Jim but he wasn't at a stage to be able to talk. So I couldn't understand why I had to be separated from him. And they never explained it to me, reasons, “oh, this is the country, this country goes this way because this is patient confidentiality”, that's it, no further explanation, reasons are given, -how can I say? Yeah, Jim was never actually asked “would you prefer Aiko to be here, if, are you OK”, sort of thing, nothing. And actually one psychologist, when Jim was allocated talking therapy in 2002, Jim really forced him to ask the question, “Doctor, can I take my wife with me into the meeting room? And this female psychologist said, “I don't think so”. That was it. He asked but she said, “I don't think so”. And Jim was completely put off by the word and he lost the confident asking the same question, -never again. It was a really terrible experience. And still nowadays, the situation is getting better but still some professionals do prefer to treat individually, which I can understand, but I think those things should be questioned before starting any treatment otherwise you will miss opportunity for the real stories from carer. And if patient, mentally ill people is not able to talk about it themselves, nobody can treat them.
One carer said she felt 'I am only being heard when it comes to sectioning [when] they need you on their side to make things go smoothly'.
She says the hospital wanted her to sign sectioning papers while 'bluffing' about what was...
One or two said they had stopped coming along to appointments because it is so hard to cope with being ignored or feeling that you are not trusted.
Some carers had 'fallen out with' workers when trying to get their voice heard, and some were careful what they said to (or about) workers to make sure they did not compromise the treatment of their loved one. One carer who had disagreed strongly with her father's treatment reported that legal action had been taken against her. Others also felt doctors and 'the system' were very powerful compared with carers.
Elaine felt the psychiatrist questioned her mental health because she was a 'difficult relative' ...
Sophie says doctors sometimes don't talk to you to protect 'their own'.
So I knew something was going wrong, I knew things but it's like how do you as a simple person who is not familiar with what's going on in the hospitals and the medication and the right process that you've got to go through, how do you try sort things out? But I guess for me in the end, it is about getting on the case and continuing to say well, let me, I need to understand what's going on. Because to me it doesn't feel, -I feel as though even though my sister's being cared for in an environment that's a lot better than where she was before, I still feel that there needs to be answers to lots of things but where do I take that any further? How can I get somebody to listen? That is not, -because to me, I met with one of the chief executives at the hospital and, you know, talked about the situation and how I felt and it almost and it felt as though they were protecting their own and unfortunately I know that's what they do, you know, it's, they're not going to hold their hands up unless you can absolutely and utterly prove that there's been some negligence. They protect their own and it's just really, really sad because I think at the end of the day, the medication that my sister was on, it would've eventually killed her, I'm sure it would have, I'm sure if would have because if you'd seen the person I knew when I left her here, to the person who she is now, you'd be mortified, absolutely mortified. It's a shame, it really is a shame, it really is a shame and as a carer I just feel I'm still fighting this battle.
One woman said that professionals could afford not to listen to carers because when all is said and done, 'they know we'll get on with it'.
How to get heard
Some said the best way of being heard was to build good relationships with professionals over time.
Over the years he has developed a good relationship with his GP.
How did you get that good relationship with your GP?
Well firstly when we registered with the GP she was a lovely lady, and also we are from Sri Lanka, we respect the doctors and everybody, we don't throw our weight about, you know, we respect them, and if you respect them and treat somebody kindly they will reciprocate. I remember once I went to the surgery, and there was a new receptionist, so I nicely asked her, she said, 'why are you nice to us, normally people are nasty, we are a bit puzzled', you know, that sort of a business? So we built up over the years a very good relationship, you know, so no problem, and also I read in the newspapers GP's and some of the doctors, their job is quite stressful, people come along and tell them the tale of woe and the problems. And I read some statistics that half of them become alcoholics, drug addicts, suffer from mental illness, so that sort of a business. So you also have to understand, they have problem as well, you know, but she's good. Tomorrow she leaves, and if we get another GP who's not very good, then I go and change it, I'm not going to put up with it, yeah.
Others said that being active in carer groups and organisations can give 'the backing of others' and 'teach you how the system works', which helped people to be more assertive. Some of the carers who worked in services themselves thought they were more likely to be listened to, and they often felt quite able to speak up.
She thinks her father would have died in hospital had she not intervened using her skills as a...
People talked about having to be firm and to 'know what you want'. Some made notes which they brought with them to meetings with professionals. People also talked about 'not taking no for an answer' and that 'sometimes you need to annoy people', or 'learn to stamp your feet and shout'.
Some had written to their MP or threatened to involve the police if they felt there was neglect or abuse. When relationships had broken down, one carer said she only wanted to speak to professionals with a third party present, and one or two carers had involved solicitors when they felt things were getting really out of hand.
How to listen to carers
Some carers gave examples of how professionals had found ways to really listen to them without breaking patient confidentiality.
A friendly doctor took time to talk properly to Miriam and her son.
Others said it can be difficult and 'really uncomfortable' to talk to professionals about their loved one with them present. One woman said it made her feel guilty. Talking to professionals without the knowledge of the person they cared for was seen as bad for their relationship, and most said they didn't involve themselves without the agreement of the person they cared for.
Despite the attitudes of professionals, Nick involves himself but always asks his son's permission.
Some said there should be something in place which allows 'everybody's view and perspective to be heard.' And this shouldn't necessarily mean the carer and the person being cared for had to be present at the same time. Instead, professionals could help build trusting relationships between both the carer and the person who is unwell.
Nita thinks professionals should give time to both carers and patients.
Do you feel that health professionals do that?
No because I think they have a bias towards one or the other, and I think it's also about resources, that if they were to sit equitably with all parties. But I think there's going to be, there are going to be issues around the dynamics if they don't do that, so half an hour with the carer, and half an hour with the person who's caring for them just to get their perspective. This is a difficult situation, because if somebody's caring for somebody, and they say to the person who's assessing I don't want my confidentiality breached, then the. The worker assessing them would have to honour that wouldn't they? So it should apply for the person who's experiencing the problems. But I think where the problems are is when somebody's really ill, and the carer is then, they sort of feel locked out of what's happening.
In the USA Gou could go to weekly meetings at the hospital and talk to health professionals about...
Over there, one thing good over there, we have, when he was in New Jersey, we have two meetings a week, on Tuesday, it's the parent and the patient, if I have a patient there, I will, -I can go in there and the patient and the parent, and there will be a head nurse or a psychiatrist or somebody there to organise the meeting. And my son can say anything to me and I can give a good, -and I can answer him back. Then a psychiatrist will say, -will tell my son he is wrong or I am wrong or something like that, you know. A friendly, -this thing. And to me, that is very, very helpful, because sometimes -you don't say things in anger, things go better. My son has his view, I have my view, or my son wants something, I will say, “I will try my best to do it”. And that is very helpful. And on Thursday night, seven to nine, it's only the parent meeting and the parent can voice the concern and every, -about the medication, can ask any question and can give all their views, which is, to me, is very helpful too, which we don't have it in this country. And to me, to me that was very good, because one Sunday I went to see my son in the hospital and my son says, “oh there's no toilet paper” and my son say, “the patient had to use their underwear to clean themselves”. So I was a little bit worked up, or something. I went to the office and here this woman, black woman, big black woman was sleeping on the chair. And I woke her up. I say, “excuse me, excuse me, there's no toilet paper in the toilet, and the patient need toilet paper”. And she looked at me, she says, “who do you think I am? A supply person?” And I was, was really very annoyed. I say, “you're lucky it's not my son otherwise I get a lawyer in”. I would get the newspaper in too. And one thing was good, I was able to bring the matter up at the next meeting. The person which chaired the meeting was surprised, and she said to me, “I'm glad you brought that up. We will look into the matter”. And next week she came back, she apologised, she says, “yes it did happen, and she made excuse for her. She has been working double shifts”. But I said “that's no excuse”, you know. And she says, “thank you, thank you for giving attention to the hospital. We'll make sure it won't happen again”. Because to me, all these meetings are important, because you can bring up what you see, you do not like, or you think is wrong.
Last reviewed September 2018.