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Mental health: ethnic minority carers’ experiences

Dealing with hospitals

Carers of people with mental health problems come into contact with different hospitals departments. If people with mental health problems are very unwell and considered a danger to themselves or others they will be admitted to an NHS psychiatric hospital. Admission can be voluntary or compulsory through being 'sectioned' under the Mental Health Act. The law says that the view of the nearest relative should be considered when a person is admitted to a psychiatric ward. It is also possible to have private health insurance and use private psychiatric hospitals.

Hospital outpatient departments are used by those who need treatment but don't need to be admitted to a psychiatric ward. Some carers we spoke to had to take their relative to an Accident and Emergency department after serious injuries or suicide attempts.

Treatment in psychiatric wards
Many carers said that, when people are very unwell, they are safest and best looked after in hospital. These carers thought it important to work together with medical staff. Some said they trusted the expertise of the hospital staff and were relieved to have some responsibility taken off them.

 

Leah is happy with her son's consultant and trusts her (recording in Chinese).

Leah is happy with her son's consultant and trusts her (recording in Chinese).

Age at interview: 62
Sex: Female
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When her arrived the hospital, the doctor saw him and asked him to stay in the hospital, give him 3 months to 6 months. The doctor said to me in the period of time if he gets well earlier, he could be discharged at any time. I could also sign to discharge him. But I reckon I should let the doctor to decide, because I am not a professional. If I sign to discharge him, who owns the responsibility if something is wrong? Therefore, I -fortunately the consultant, the chief doctor was very good. She is kind-hearted, is a female doctor. I do not bother what race she is, she is white but I do not bother what race she is, the most important thing is she is good. And when he was ill in the hospital, he could not control his emotions, could not control. So the doctor, since he was in the hospital the doctors have their ways. If he cannot control, they will give him injection or medication. I talked to the doctor, I said now let us do not bother, I said to the doctors and the nurses, let us do not bother who is wrong and who is right, he has illness. We hope, I hope, as I am the mother, to cooperate with the doctors and nurses to make him recover soon. My mind is like this.

 

Her son complains about the nurses, but she is grateful to the medical staff (recording in Chinese).

Her son complains about the nurses, but she is grateful to the medical staff (recording in Chinese).

Age at interview: 62
Sex: Female
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The consultant and the psychiatric nurses are very nice. He always said to me, he said the nurses scolded him or what, but I did not listen to him. Because he was ill but he did not realize and he could not control himself. Someone told me, he said, “your son was not cooperative with the doctor. He was reluctant to take tablets and was not cooperative with the doctor.” I would not get angry and I explained to him. I said, “If he could be cooperative with doctors, he did not need to stay in the hospital.” So that person said, “yes that is right, that is right.” Sometimes I was very grateful, when he was discharged I sent a card, I was very grateful to the doctors and nurses.

Other carers, however, didn't think people could really get better in psychiatric wards. Some said that people who were in psychiatric hospitals long-term were 'just locked away' with very little to do. One woman asked 'how can you have so many people sitting around smoking and watching TV - do they think it is worth sectioning people for that?' And she wondered' 'how does that equip you for when you leave?'

 

Raye says her sister, like many other people from minority ethnic communities, has become...

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Raye says her sister, like many other people from minority ethnic communities, has become...

Age at interview: 28
Sex: Female
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And you go to those hospitals and you go to those wards, it's the same thing over and over again. Black and ethnic minorities are in the majority and everyone's just sitting around smoking and watching TV. In my opinion, this is what I've seen, it doesn't seem to be very constructive, they're just shot full of drugs and, so they come out and they're institutionalised as with my sister, that's just been in and out, in and out, in and out, revolving door. Every time it's almost as if she's lost a little bit more, she'd come out and she couldn't make herself tea or she'd wait till six for her dinner, she'd be really hungry but she wouldn't ask, you know, and, so I'd be there trying to give her, like OK, hospital time's around sixish, she'll have her dinner, so trying to give her, her dinner and stuff like that. My dad and my brother aren't so bad with that but my sister has been and it's hard because she used to be a size 10, 8 and she's even way gone past me, every time she's been here ill she's put on weight. 

This was before she started getting ill and every time she, -it's almost like she loses the will to live, she just, she does the bare minimum now and she doesn't really wash her hair and, and stuff like that, doesn't really look after herself so I've tried those things and then I've tried to do her hair for her and all those sort of things, we've been shopping and all that sort of stuff.

People also said that hospital care seemed mostly to involve medication, and that there was not enough psychotherapy or activities to occupy patients, or spiritual care. 

 

Nick's son has had little psychotherapy; and he thinks there is a dearth of psychotherapy in...

Nick's son has had little psychotherapy; and he thinks there is a dearth of psychotherapy in...

Age at interview: 74
Sex: Male
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The point is, in our system there are no, there's not enough psychological input. No psychotherapy as such. Is really very little. Now my son has been seen by psychologists, but only two sessions.

Really? Over the twelve years?

Yeah, in that ward. And that doctor was very good, but he did stir it up a bit for him. But that man left for a nicer job in America. And the next psychologist, he just come in the post now this month, and hopefully he'll get a chance. You see, everybody knows that this is a mental illness, that he'll need a lot of talking to get it out of you or whatever it is. But there's no money in studying the proper psychotherapy. So even the Prime Minister recently said there's a lot of people with depression and all and therapy will help bring them back to work. Well where is the money? He's not investing any money for psychotherapy. There are no psychologists on the ground, this is the problem.

 

Angela thinks people with mental health problems need a firm hand and spiritual care.

Angela thinks people with mental health problems need a firm hand and spiritual care.

Age at interview: 42
Sex: Female
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They do a lot of drugs here in the country so that is why the mental health is more. Do they, -they do have them in the street -like in Africa you can't see them in the street, you can't count many people. They are naked in the street, you understand, they don't dissociate but those that are here they are not actually helping them, they are not helping them. -Because -what they are not supposed to be doing, they are still doing it. It needs iron hand, if actually you love people you're taking care of. Mental health needs iron hand, it's not something you pet people over, you don't pet them, just be straight for once, you understand? And they need counselling from ministers, -you understand. And there are some, you know, that are actually OK, but the counsellors, I don't know if it is the counsellors they call them, they don't release them, they don't want them to just go like that. Well they are already OK but they don't release them, so go on do something meaningful with their lives. I had somebody who was talking in the, on TV, they say they are to facing their prayers before they release them from the rehab, you understand, so I was just smiling, do you understand? Some of them are already well but the government will not release them, why, why is that?

Some carers worried about the safety in psychiatric wards. One person's elderly aunt, who had dementia, had been sexually abused by another patient. Based on her own experiences, another carer felt her father wasn't safe in hospital.

 

Having been attacked herself, Elaine worried about her father when he was in hospital (played by...

Having been attacked herself, Elaine worried about her father when he was in hospital (played by...

Age at interview: 60
Sex: Female
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Earlier in the, at afternoon visit I went to leave the ward and I said to one of the nurses, like asked her where the public toilet was so she told me and as I was turning to leave I had this pashmina round my neck. I caught the eye of this woman who I'd seen being violent before coming up to me and I'm thinking, 'right I'm going, I'm getting away from her'. And she caught me by my scarf and was just like, I was being like half strangled. It took three really big nurses to get her off me. So just like more, it was just like, I was going like this more layer and layer of trauma and stress and bad treatment, and it was just like as though it's a nightmare, I kept thinking, 'oh I'm going to wake up, and this is like, this isn't a nightmare', this is going on. So as I went back because my dad was, I'd told my dad I was going back and I went back in three hours later. That's right, I went to see my auntie, went back thinking if somebody else comes up to me I'm just going to wallop them because I've just had enough. So then there's this, yeah, this bang and the crash and the nurses are running around. Then they realise the problem's in the side room opposite my dad. Oh, they've moved my dad to a side room closer to the nurse station by now and they'd given him like a bed table because we'd asked for things, but only because we'd requested it. And then the nurses were, couldn't get into this room opposite and it was in darkness. It was the same three big nurses pushed their way into this room. It was a man, it was a male patient in there on his own I had noticed the day before. They put the light on and I could see these naked legs and I'm going 'oh', I'm like 'now what?' And it was the woman who had attacked me earlier and she was naked, and I'd seen her naked before from the waist down in a male dormitory on the ward, on the floor. And I'm going, like 'what?', you know. So she's been in there, she could have assaulted that man. How do I know she's not in here interfering with my father when I'm not here, who's vulnerable?

Resources vs. the duty of care
Some talked about a lack of resources in mental health services, which meant that wards were understaffed, or unqualified personnel were used to save money. Carers had sympathy with hospital staff because of their demanding jobs, including 'being shouted at' and the 'risk of being beaten up'. They also mentioned the long shifts and 'poor pay for nurses'. But they also felt that hospitals should take their duty of care seriously, and not hide behind 'restricted resources'. For example, some said the food in hospital didn't suit people's diet and was unhealthy. Since 'healthy eating is not rocket science,' hospital food could be made more nutritious and culturally appropriate.

People also talked about neglect, such as their loved ones not being changed or fed as often as they needed, their medication being wrong or left untouched, people getting dehydrated as well as a lack of privacy and dignity.

 

Ramila thinks people with mental health problems should be given the privacy of their own room.

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Ramila thinks people with mental health problems should be given the privacy of their own room.

Age at interview: 56
Sex: Female
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People ought to have their own privacy and their, you know, I think the example that some of the carers have given is that, if you lose a, -break a leg or something like that or if you go in the ordinary hospital, then you're treated OK. I was trying to say, OK they'll get their own accommodation, but it's not true. But that's just a visionary thing I have. But at least they have got their privacy which, and people, -I feel more than in mental health services really, but ideally my idea would be that each person gets their own room. Because it's needed, where they're emotionally so upset, they have been so damaged by something or the other that they need their own space, and then also communal space. And a lot of effort to be made, I mean not anybody giving up on anyone really, because I've, you know, come across people with mental health problems and, underneath their psychosis or whatever it is, I'm talking about schizophrenia mainly, -but there's such a nice person there with love, understanding, wish, desires, wants. And sometimes when professionals only see those sort of people for consultation for five, ten minutes, they, I wonder whether they see this wonderful person and the personality behind it. Or then I think, you know they're giving up on this person. There should be a hope that this person will get better, and they will be able to visit some, -whatever life they want to, rather than thinking, oh no they'll never get better, which is what I've heard a few times.

People with mental health problems in general hospital wards
People with mental health problems sometimes need hospital treatment for physical conditions and are sometimes moved between general wards and psychiatric wards. Some carers reported a lack of communication between different wards or between hospitals, which sometimes meant people missed out on treatments, or were not seen as 'whole persons'. Lack of communication between services meant carers often knew more about the situation that the professionals involved.

 

Elaine's father was sectioned and moved from the general ward to the psychiatric ward against her...

Elaine's father was sectioned and moved from the general ward to the psychiatric ward against her...

Age at interview: 60
Sex: Female
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It was one of the worst days of my life, Jorun. And I just felt like everything I had campaigned for and kept my dad safe and independent and free, and my dad was looking ill, you know. I'd seen him earlier in the morning, at 9 o'clock in the morning I went in and he was doubled up in pain, and he was clearly not ready to be moved anywhere. And obviously he had bone cancer everywhere so any move was just making him feel worse. So eventually they called me in and I saw, I was just at boiling, at like blowing up point. I could have just really punched somebody because this is four years. Four years of my father having had dementia, four years of standing up for him knowing that I had been the person that had kept him free. And then at a time when he was so ill they sectioned him. So I went in, and the psychiatrist said, 'we've sectioned your father'. And I said, 'but he's not well enough to be moved from here', and he said, 'oh well the consultant says he's medically fit to be moved from the ward'. And then I looked at the GP and I'm going, 'what are you doing here?' Because I've, he had been part of the problem. So then the psychiatrist immediately starts defending the GP and is like, 'oh don't speak to him like that'. Then the social worker says, 'we couldn't get the GP that your father now sees in the practice, and also Dr, this doctor has been seeing your father for a couple of years and knows him well'. I was just so angry. At that moment, and ever since all communication with the social, my dad's psychiatrist had been nonexistent.

 

The psychiatric ward could not provide all the treatment her father needed and did not have notes...

The psychiatric ward could not provide all the treatment her father needed and did not have notes...

Age at interview: 60
Sex: Female
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So I went down, said the same thing to the staff nurse, he said the same thing. I came back, gave my dad some more water, went down the third time and I said, 'My dad needs a doctor and if you do not call one I'm going to go and get one from the general hospital and I'm bringing one back because my father is really ill'. So eventually he called out the doctor. She came in and they started, they thought because of my dad's heart problems they thought he was having a heart attack. Did an ECG, everything looked normal but she's asking me about my dad's medical history and I said, 'but it's all in the notes. I am exhausted, I've had two weeks of hell here and my father has been neglected. Why are you asking me everything?' And she says, 'oh the notes', she said, 'the notes aren't here'. So she said that my dad was dehydrated, that he really needed an intravenous infusion. Because he was on a psychiatric unit he couldn't have one because of health and safety, and so I said, 'well he needs to be moved to a general hospital today then', but she wasn't prepared to call up a consultant who can release somebody, obviously, from a Section. So she said, I said, 'they're not looking after my father'. She said, 'well we can get more fluids into him'. I said, 'but they're incompetent here. This is why he's in this state that he's in now'.

Many carers talked about how general hospitals wards 'did a good job clinically' but didn't have the resources to look after people with mental health problems. One man even commented: 'If you ever get sick, don't go to hospital, they are dangerous places!' Some therefore felt they needed to be involved in hospital care to make sure their loved ones were safe and treated well.  One carer thought her father wouldn't have survived had it not been for her nursing background.

 

She felt staff had given up on her father and so she intervened (played by an actor).

She felt staff had given up on her father and so she intervened (played by an actor).

Age at interview: 60
Sex: Female
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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.

While in hospital for observation after suffering a seizure, another carer's husband (who had dementia) did not get out of bed for a week, and couldn't stand up when he came home. Since then, both have been housebound because of his immobility.


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Last reviewed September 2018.

Last updated February 2013.

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