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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.

 
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Miriam says patient confidentiality is tricky when it puts people at risk.

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Age at interview: 51
Sex: Female
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And I remember being to a conference and someone spoke about that, and they said that they're dealing with a confidentiality issue in mental health, because clearly if somebody's, -whoever they, who they are, they need help more than anything else and confidentiality is very difficult when there is risk involved and if the carers don't know what's going on, and because it's confidential, and you want to help but you didn't know what to help, because you're not put in the sort of picture as to why things are getting the way it is, you know. So, I hope maybe that's changed at some point, but so many people that I've met, as carers, do say that and until you are in the situation you didn't understand how it is, but it is possible that if people are aware of how to help and what to do to help, I mean, if you are a wife, husband, maybe mother, father or whatever, there are certain things that you can do to maybe alter the situation. But if you don't know medication' Again the medication, it has so many side effects, -my son, -they didn't tell me, especially, the...  didn't want me to know in terms of the side effects. So you, you're wondering why he's not taking the medication, and in a real sense he's got things that he can't tell you as a mother, why he doesn't want to take it.

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 ...

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Age at interview: 59
Sex: Female
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So another thing, I feel they don't know them, maybe that's my feeling. They don't know them, they see, they've got an idea and they don't take enough notice of what the carer says. Because I feel I could have told him that he was, you know, muttering to himself, that he was holding, you know, his face in his hands and the suffering on his face, it was awful to watch. And that he was, -he couldn't, -he was not seeing anyone, he was, he was not communicating, he found it difficult to have a conversation because that -his main problem is communication, he found it very difficult to communicate. I mean now it's better but it's still not what it was before he fell ill. And yeah. So I think, I think it could be, because I know they are going to try to, at the moment -. I have seen papers that they will sort of involve carers a bit more, so, I mean, to listen to what the carer says, because, I mean the carer lives, has to do with that person, -if not 24 hours a day but a lot of the day. And, you know there are lots of signs that she can, the carer can recognise that the professionals might not, or you know they might, I don't know, -because my son was, he was, it was never very spectacular. So I don't know what, you know because he's never been to hospital, he's never been sectioned, he's never been hospitalised, so he's always managed to stay at home, but he was all the same ill, and not functioning. Perhaps he was not a danger to other people or to himself, but he was still not well, and as far as I am concerned if you are not, -if you can't socialise, if you can't have even a part time job or if, you know, you can't have fun with people, you are not well, -that's the way I see it. Because sometimes I think that the professionals think, you know, he's quiet in his corner, he's not causing any trouble, he is stable as they say, 'fine, he's not in a crisis and'.

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.

 
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Ramila got frustrated when she rang the surgery and they refused to tell her if her brother's...

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Age at interview: 56
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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.

 
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Miriam thinks regular communication between families and professionals can help prevent crises.

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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.

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. 

 
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Ramanbhai comes along to his wife's consultations and they meet the psychiatrist together after...

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Age at interview: 62
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When you go to the doctor or other services, do you go with her or does she go alone. 

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...

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Age at interview: 69
Sex: Female
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Because at one time carers had no voice, they had no voice at all, nobody would listen, nobody was listening, no one was listening. But I think now the carers have got a lot more voice now and a lot more experience is coming out about what happened to people under the medical provision. So I think they've all taken it on board now, you see, because of the voices of the carers, you see, but one time the carer didn't have any voice, we speak but we weren't heard, do you know what I mean? Yeah.

Did you feel you were trying to speak out back then?

I did.

Yeah.

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. 

 
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Agnes was told she had to leave the hospital for her daughter's test, but was not told why.

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Age at interview: 50
Sex: Female
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Once I went to see my daughter, basically I went and see my daughter everyday, she was in hospital for nine months I went for nine months non stop except when she says she does not want to see me or does not want to talk as she is unhappy or have some appointments. Once I went to see her in the hospital, someone who worked inside said she has to go to the ward next door to check something, a test. I said 'ok, I will wait for her there'. I said to my daughter 'Daughter I will continue talking to you after you come back from your test'. And then, how do I say it, a worker came out from the office 'Mrs Lee, you have to leave', I said 'What is it, why? Tell me the reason why I have to leave.' She said, 'You have to leave' again the same action, same expression right.

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.

 
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Patient confidentiality needs to be explained to people who are new to the UK and patients should...

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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...

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Age at interview: 59
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Because the doctor said that -unless, -if he, -when they come to the hospital they have to sign certain papers and 'you are bringing him here but you don't sign the paper?', I say 'without my knowledge what kind of medication you are going to him, and if you are not explaining to me, how can I sign the paper?' Then one of the social workers he said, 'OK, I speak to your husband and your husband said yes', I said, 'no, what number did you dial my husband, my husband is not here, how can you do that?' And then we had to take, -we take to the tribunal, -and then they know how it's coming, they are bluffing. Then one day the doctor phoned me in the morning at home and said that, 'Oh, I can't give the treatment because he is not willing to take the medication'. Then I had to fight with the doctor on the phone, not fight-fight, it's a verbal fight, that -if the baby is, little baby is not feeling well and you have to treat them, the patient have to come to you then you have to treat them, you have to find out what was the cause for that, and you have to give the treatment. Similarly when they have a mental problem then you have to find out what's the issue with them and then you have to give the treatment. You can't say denied and say, 'no, I'm not giving the treatment because he's old enough'. 'If their mental state stabilised then they won't have to come here'. And then he have, -agreed with me and then say, 'OK, I will see you so and so in the mornings about half eleven, and we will see you there'. Then we went together, -myself and my daughter- we went together and said that how, then he said, 'no, your daughter, you can't bring your daughter in, because it's just only you'. 'Say if you are using the medical term, certain words, and if I don't understand you can't explain to me properly and something happens I don't know those things. That's why I need somebody with me and only my daughter knows those words, terminology, and if you say no then I won't sign anything'.

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' ...

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Age at interview: 60
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And I went and sat in this little reception area in the corridor because all these nurses and managers all started running and so I felt like oh my God, like, Jorun, I was just traumatised from being attacked, traumatised at seeing my father like this. So then this junior doctor got me some water and he said, 'it's all right, it's just all too much pressure isn't it?' And he was sort of understanding. Then this consultant, who wasn't my dad's consultant came out and he said, 'come and sit in my office a minute and have a couple, I'll just talk two minutes'. So we sat in there and he said, 'oh my dad's got cancer everywhere and he's got it in his lungs'. And I said, 'well I wasn't told it was in his lungs', and he said, 'well it's everywhere'. And then he starts saying to me, 'oh, how many brothers have you got?' And I was going, -what's this got to do with anything? 'Three'. 'What do they do?' 'Nothing', I said. 'They don't help my dad at all'. He said, 'oh, no, I mean what's their profession'. So I told him, and then I figured, he thinks that I need psychiatric care. He thinks that I'm sectionable or something or that I've got some problems, and I said, 'look I know what you're doing. There's nothing wrong with me. I'm traumatised by the NHS, by what my father's been through. He's been on a section, now he's back here'. I said, 'I don't want to talk to you any more'. I said, 'I'm disgusted with this place', and walked out. But you see, you could see one by one, hour after hour I'm just, in their eyes I'm becoming the problem and meanwhile there's this elderly man full of cancer with dementia, 'we might as well let him die because he's got cancer everywhere'. 'He doesn't want his drip in, blah, blah', you know? 'She's written to the MP, there's too much attention on this'.

 
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Sophie says doctors sometimes don't talk to you to protect 'their own'.

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Age at interview: 42
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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.

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Age at interview: 63
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And I've got a good GP, she's very, very good, lovely lady, doctor, Mrs. [name], and she has told me if I've got any problem to come and tell her, and she will try to deal with it. Sometimes a carer company will try their luck by trying to cut down on certain services, then, as soon as I notice it, I said, hold on what are you trying to do? Then there's a bit of argument, then I tell them look I don't want to argue, are you going to do it or not? If you're not going to do it, I know how I can make you to do it, and then all that I do is ring the GP, and the GP rings up, that's it problem solved, you know, this is it.

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...

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Age at interview: 60
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So basically they were going to let my dad die. They could have covered up all of their neglect. So, -but they weren't feeding him and I know, I think they were just throwing the food away, because the way things were emptied, like the soup thing and the plate, it didn't look like, because, you know. And also, because I've worked in a hospital I know what happens. So I went away for a while thinking I've got to go out for an hour, and I came back at about 5 o'clock and I looked at my, -because I was always looking at my dad's charts and I'm going, his blood pressure is going right down. It was like 75 over something. I'm thinking it should be at least 120, and my dad's all like, and he's lying flat. They were going to just let him die. So I got, -I woke my dad up again and I got him a drink and I said, 'I'll be back in a minute'. I went out and there was this junior doctor on the ward and I said, 'I trained as a nurse. Can you tell me what my dad's haemoglobin is please?' And he said, 7. So I said, 'so when is my dad getting a blood transfusion?' So of course they had to do it. He obviously checked with his boss, and then I stayed there until, -whilst he'd put the blood up and I said, 'Dad', because my dad had kept pulling out the drips. But they weren't, -he was just so unhappy. He was like, it was just like I kept saying, well my dad shouldn't have been back round here. He should never have been moved from this hospital.

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.

A Lasting Power of Attorney (LPA) could also be used to help the carer if it has been set up in advance. A Lasting Power of Attorney (LPA) is a legal document that lets a person appoint someone to make decisions on their behalf. A Health and Welfare LPA allows a person to choose one or more people to make decisions for them about their personal health and welfare. It can be used at any time in the future if they are not able to make their own decisions. 

How to listen to carers
Some carers gave examples of how professionals had found ways to really listen to them without breaking patient confidentiality.

 
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A friendly doctor took time to talk properly to Miriam and her son.

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Age at interview: 51
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I think the first thing that I would, I would mention from the beginning would be, sort of, family work, which would sit everybody down, wherever, is involved as relations, family, friends close to the person, to let them know what is going on and how things can either be better or worse. So that right from the beginning, people know what the situation is and that comes with this confidentiality' as well, what they are supposed to divulge or whatever, but just to let them know what condition this person has, what medication helps, what other medications are available, what are some of the symptoms that this person would exhibit, and maybe tell them about the relapse signs and, -or let them tell you, because most of the carers know more than the team because they know exactly who they were before and when things don't go right, so at least that sort of dialogue, because the last admission that he went in, the doctor that saw him, I know him very well and I've worked with him for the last 15 years since I stared working, and he sort of, he had a ward round and he waited until everybody had gone, he said, come after the ward round we'll sit down, and we sat down for almost more than an hour, and he went through every single bit and the two of us sitting down with him and really made him aware of the difficulties, the problems, what my difficulties are, what his is, you know, and it really helped, and the reason why the medication is, -I feel the medication is not helping him, in terms of him thinking that he's going to put on too much weight and maybe affecting his sexuality all that, you know, to a point, OK I will then change it to this.

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.

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Age at interview: 74
Sex: Male
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Oh, clinicians do, they're' they say oh we can't talk about it, it's confidential. How are you going to, in my son's case, they never had asked him whether, would you mind if your parents know what was going on? They never did. The letters say that just, it says of course we'll have to get his permission. But they didn't say whether they asked for his permission or was refused. He wasn't. And that statement alone by both two letters, both letters gave a similar sort of meaning. Say we haven't asked but you know. More or less imply that they may have etc. So whenever I notice that there is, 'look I'm going to forward this information to the doctor, is it all right with you?' Because his concentration is very low, we spend about a minute, 'it's OK' then, that's it. But I have never done anything without telling him. Because I say 'it is for your own good, if we don't say these things, I know you're not talking to the doctors, at least let me do the talking'. Because the carer is with the patient 24 hours a day, seven days a week. Who knows better? If it's a caring carer I mean. If it's not a carer who wants to get' send him off to a, you know, to a ward or something, that's a different matter. But most of the carers are not like that in this country. They want to see their son or daughter getting better.

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.

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Age at interview: 46
Sex: Female
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Yeah, yeah, but it's about teasing out what's going on, what the dynamics are.

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...

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Age at interview: 72
Sex: Male
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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.


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Last reviewed September 2018.

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