Mental health: ethnic minority carers’ experiences

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

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

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