Mental health: ethnic minority carers’ experiences

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.
 

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.

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.
 

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 [husband] never refused me to go in into the room, and, -but doctors think, because this is confidential, this is about [husband]'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, [husband] was never actually asked “would you prefer Aiko to be here, if, are you OK”, sort of thing, nothing. And actually one psychologist, when [husband] was allocated talking therapy in 2002, [husband] 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 [husband] 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.

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.

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.
 

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.