And then there was this person asking me everything which I felt had been there, and recorded quite a few times before, or millions of times I would say. And I think underneath, it didn’t seem to me that there was any understanding really. Because they didn’t understand my situation, and I went through the procedure because I think, I had to, I had contacted the mental health service managers to say, look they’ve withdrawn this CMHT person from my brother and I feel very upset about it. And I needed to be, for myself, I needed to be doing something for my brother, to making sure that he got some kind of service, or have-. And so I went through this procedure of going to see the service manager and talking to him and opening my heart and crying my tears. And he said, right, you know, maybe I could go through this assessment. So I went through this assessment. And really there was no understanding and then as I expected, surely a letter arrived on my doorstep saying that, at this stage they didn’t think there was anything else they could do for my brother. So it just kind of was confirmation of what I knew already. And yet in a way, being forced to go through the system. And what in fact was offered was that, why did I not go to carers’ support group? And I thought, I work full time. I look after my brother in all my spare time. I work in caring services, with mental health services, so I know most of the things. How do they expect me to go to a carers’ support group? And what are they expecting me, -what support are they expecting me to get? Because the support I want is a professional support. Somebody checking with me, or somebody offering me some of their time and seeing the way I do things, it’s just a reconfirmation of whatever I’m doing is the best really. And yet that’s not on offer from anywhere. And so it’s, it becomes quite annoying really.

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, you know 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.

The way my life has taken course, I feel extremely fortunate. I feel I’ve learned so much from my brother really, and I wouldn’t have it any differently, except of course, I wouldn’t want him, if the choice was given, I wouldn’t want him ill really. But I’ve learnt so much and I have so much respect for him as a person. As someone, -I don’t know if I had the same illness, that I could have coped with it in the same way, be such a nice person in spite of it really.

Where did you get information?

Nowhere.

The hard way?

I think, yeah it is the hard way really but, for me, I think as things have turned out, that I just slotted into the mental health services in, so I’ve just picked up things from my work basically. Other carers I think, nowadays if they’re computer literate, they have to use the Internet service, there’s so much information. But, perhaps if they’re given a bit more direction it would be helpful because there’s so much information you could get, -become a bit over awed or, you know, over confused with various things that are coming to you. But also libraries, ask for, -be a bit more specific because sometimes we just, as carers we might just say we want information but we’re not very clear in our mind what information you want. But if the professionals worked with us and helped us to identify what information we wanted, then we could say OK, I want information about medication, about what exactly this illness is, whether it’s schizophrenia, or, you know, bipolar, or depression, or eating disorder, or addiction or whatever. And then we could be saying, what are the choices of medication? What are the choices around therapies? So trying to formulate our concerns, so this would be more in a specific way. What are the side effects? Because quite often there are horrific side effects of medication.

And, I just think, I do it out of love for him and I would have always done it whether I got a penny or not but, -and I don’t claim a carers’ allowance. Which I, -partly because I think that I work full time and I wouldn’t be entitled to carer’s allowance anyway, but I haven’t even looked at it really. But I do know, I feel angry with agencies because I feel that they bring out regulations and laws and things but they’re not really, really prepared to help carers. I’ve had quite a few experiences where I’ve, you know, I suppose in the end I’m quite angry with the primary care system, with the GPs, angry with social services and angry with mental health services. I’m angry, yeah, with all the agencies, you know, like pension services, all the people who are front line workers, as well as people who actually make decisions. Angry with them all, and yet I do have understanding because I, in my own life I can, 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.

And a colleague at the mental health services used to be tremendously helpful because again, although working within the services, it’s surprising how infrequent the opportunity there is to open your heart to whatever is going on. And, you know, I just try to work in normal hours and then, -although I, as I said, I’m very fortunate. I have flexibility in my job so I can work my own hours in the way, you know, as long as they’re reasonable. This colleague of mine used to.

She used to ask me, because we were quite close, she used to ask me all the time how my brother was. And I could cry to her, I could talk to her about incidences and it used to be very helpful. And so for a period of three or four years it was, that was extra support, you know, from this colleague. She left unfortunately, but just as well because sometimes I just want to be normal really. I just want to, not be wanting to talk about him all the time anyway, but I do. I think parents always talk about their children, and I always talk about my brother.

Yeah, there is this thinking going on that there are certain people in, you know, this is more like Eastern, Indian thinking, when there are certain people who have got the evil eye, so to speak. And they can cast, you know, if they’re jealous or envious or not happy with you, if you do something wrong to them by, maybe sometimes they come begging for food or something or the other, or whatever. And if you don’t give them whatever they want then they can cast a spell or curse on your family or on you. And, -or if they see, sometimes it’s, like a little child or beauty, if they feel, oh someone’s very wonderful and beautiful, or a little child’s so lovable, then they could cast that as well, you know, as a curse maybe.

Asian communities, you know, the language unfortunately doesn’t change in the Asian community as it does in the recent mental health services. As a worker, -so we will say ‘people with mental health problems’ rather than, ‘mad’, or whatever. But I deliberately used the word, ‘mad’, a few times in my conversation because I think someone, a professional, not within mental health services but from outside said that, you know, as a mental health service worker I might say that, Oh the English language has changed and it’s got, -it’s much better at expressing people, you know, and not condemning people with mental health problems. But he said that, if you go outside in the community people will still use words like, ‘mad’ and ‘nutter’, and all kind of derogatory terms. But to me, because the Asian languages don’t have good ways, at least in England as, -because I’m also now really far from my own culture, back in India or wherever, that maybe it has changed. But I don’t know about it, so my concept is still the same, that maybe the community still consider everybody in the term of, ‘mad’, rather than somebody having mental illness really, so.

He gets all these voices and he keeps them to himself. I think he’s quite protective of them in a sense although they’re quite annoying voices, quite a lot of times. He doesn’t want to share what is going on. But the few times he’ll share. And last night he had some kind of, -bit of psychosis ‘blip I think, and I was in another room. And he was just shouting and screaming in the room. And then, you know, I asked him what was going on, and he tried to explain and, but he was very angry. His face gets very angry and, but you know, it can be very fearful. Fortunately, I’ve been with him long enough, I’ve gone through these sort of incidences a few times, so I know that I don’t fear for myself or for any violence or, -and I also possibly know how far to stretch him. I would know when to stop.

Like I was saying that my brother rings me every morning, or if I, nowadays he’s, -for the last year or so he hasn’t been well, physically, for some problem but, so he doesn’t manage to get up early enough sometimes. So then I ring him. And this morning I tried to ring him and he wouldn’t answer the phone so here I am, sitting here. And lots of, I mean, these sort of things have happened so, over the last, past month I’ve decided I’m not going to worry so much about my brother really. That I’ve worried enough, I can do the very best, -it may not be good enough- and leave it at that. But today it, -anything could have happened.

And there’s something around money. And I really don’t want his money. But he gives me his money because he’s very conscious that I do, -nowadays I do all his shopping. I don’t feel bad about taking his money because I try to make sure that he is looked after in whatever he wants, you know, I try and get it for him. But I, -I suppose it’s in my conscience really, and because of the new legislations, or new ways of working, I’m always aware that it would look very bad by agencies that I don’t have time to do proper accounts. I don’t have time to, -and also if I tried to put his payment, -because it will mean splitting, -I do all my shopping with his shopping. I take him out whenever he would agree to me. He won’t come out of the car but at least I feel that he’s, -so I think how will I weigh up all the time that I spend on him? Not that I want it weighed up. And I, -I just think, I do it out of love for him and I would have always done it whether I got a penny or not but, -and I don’t claim a carers’ allowance.

I think after, maybe after all these experiences that he had in his childhood, whether it was beating or being, as a baby not getting the right love and attention when he needed it. He probably was a very vulnerable child and didn’t know how to cope with life in different ways, you know. And so I think, well what, -he was OK as far as I know, when we were together as a family up to the age of 16,17 although he might have his weird ways of being, you know, shy and isolated and all that. And not, -he had one or two places where he went, like a corner shop where he had made friends, -but I can’t recall him having very many friends maybe, but I was lost in my own world. But then he came abroad, back to England. And I think that was the, -must have been a terrible shock because he came, he was sheltered so much with parents and the family, and then suddenly to come to a life which was completely different. And although my brother was here, another brother, eldest brother, and he was coming to join him, very soon he had to find his own accommodation. And I think it must have been a tremendous shock around 18 or at whatever age he came, to be away from his parents who always kind of mollycoddled him, to a life where he was very foreign, different. It’s different language, different culture, different food, not the same faces, no friends. A brother and his sister in law, quite changed because they had been here longer, they would have probably assimilated more in the culture so, thinking changes because I know my thinking has changed so, -and [you know] the life makes it change because you work tremendously hard, nine to five, so you can’t stand nonsense really. And this young person coming along and so, maybe wanting care or not, it’s little things which we don’t know when you come from a foreign land where you’re not used to the ways of saying thank you or sorry or knowing the other side of life, of working life and the stresses, and expecting things maybe. Living in bedsits.

I’ve recognised, I’m, -I don’t know at what stage I recognised it but working with mental health services, I’ve always recognised about the stress that carers go through. And I’ve been just fortunate because I do this leisure, come extra curriculum activity, which is philosophy, which is, -which for me gives me a, you know, huge, huge deal of support, because it takes me away from my normal circumstances. I find the time to do it. It gives me company of other people, like minded people, it gives me loads of activities, loads of ways I could work at my skills or other things that I want to, or would want to, or other hobbies, so to speak, of reading or developing say, things like calligraphy and music, or singing or acting, or, you know, reading Shakespeare or, there’s such a huge, huge deal of activities being offered that if I wanted to I could participate and being offered really, together with my spiritual needs of development, which is what I look for as well in this, -my main way of looking at this sort of philosophy.

I suppose as, when we come across in, -as a human life, we come across these tremendous difficulties in our life where we’re bashing our head against a brick wall, so to speak, where we feel that maybe there isn’t a solution, or no solution is, -we think there’s a solution but it’s not being provided in our lives, then -I think spirituality or religion offers a strength. It offers support. It offers an alternative explanation. I think this type of religion I follow, combined with the philosophy which is very similar to that, offers that at the end, -it offers explanations around, it’s quite difficult for me to explain, but there are reincarnations [you know] that, as human beings we carry our own burdens to a degree. If you do wrong, then it’s not a punishment but we just are reincarnated and we pay back. We might be paying back in this life as well, of the wrongs we do, or the hurts we cause but, so, so in a sense the explanation would be that my brother has come with his own life to lead, his own burdens that he’s carried from, maybe from a previous life or this life, which he needs to live through and work through. And that’s how the circle goes on. There’s this circle of life. But my spirituality is around, -there’s this tremendous, tremendous power, which lives in each and every one of us, so we’re all the same. Irrelevant of colour, creed, gender, orientation, sexual orientation, we just, -that’s the spirit that keeps us moving. And if you can only recognise it, if we came to the stage where we recognised everybody as the same as that spirit, then I think we would all be living very different lives. We would be, -because it also expects us to live at the highest possible level as a human being as possible, and if we, -it kind of means to me that we’re not living, most of us. Some people do in spite of not knowing about their spirituality, they’re, they’re living at the best possible level that they can. But each one of us can reach higher and higher in our living really, in the way we think.

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 Gps 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.

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 Gps 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 Gps 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.

But, -caring because, -they just feel responsible. Maybe the person who suffers from mental illness blames them quite often, very often. And the professionals blame them. And quite often in the acute services, if the staff don’t understand or if the carer’s been nagging them for something, then the staff are, you know, always going on about us because they’ve been angry with the staff. So the carers at the end feel responsible, that they are the cause of all this, you know, so. I don’t know, -so reason works I suppose. And I would suggest that to all carers. That we may in the first instance feel that we’re to blame but it is only human sometimes to feel frustrated and angry and things, which don’t, -we expect things to work out perfectly, people to understand us all the time, when, you know, maybe they’re not able to, really.

And also there is obviously the individual person’s own difficulties and sometimes, you know, but it’s just that our motivation should never be lessened when we work with public because, a little kindness, a little more understanding, a little kind of listening, means so much more to other people really. Of, all the carers that I come across, they are very understanding people, they, -I think they also understand the restrictions of life. They don’t expect the earth but they, you know, I think they just wish that, they’re hopeful, I think, I was thinking over it and I think each carer in the mental health whos looking after somebody with mental illness, is always hopeful that the person will get better. And sometimes I think the professionals don’t have that hope. Because the professionals know how bad the illness is, what the restrictions are from medication side, and the therapy side. So, and also perhaps they’re a bit more detached. They don’t have that close relationship, but I think carers are right. I think the professionals are wrong. Because we, I, you know, was recently thinking of the situation with, if somebody is on a life machine, the medical professionals will do anything and everything to keep that life machine going, why can’t everybody in mental health service do equally the same, of doing anything and everything to get the person back on their feet?

It is very difficult to explain racism. You know, you know, -which is very silly thing to say because people who never experienced, or who don’t know about concepts of racism they say, how do you know? But you just know by, you know, sometimes they’re spitting in the street and then OK people say, OK if I’m passing by people, even these kind of yobs they will spit. But you know that it’s because of your colour, your skin, your outlook, they’ve, that’s because of that, you know the looks, the glances they give, the way you’re spoken to sometimes. So it may be, I mean, I don’t know, now that you ask the question. That maybe the GP was answering equally in such tones to all his other patients. But, you know, to me it was more sensitive. I didn’t like those tones. I didn’t like the lack of time that was, you know, given but I, -and lack of explanation, and the kind of feeling that you, that I was being dealt with just because it was his duty to deal with me but, no more and no less. I would have preferred kindness more, but, -and so I don’t know but it was just a feeling that they were being racist completely. They were very, awful, you know and it wasn’t just me. My whole family felt that. And yet we didn’t know that we had the choice to change the GPs really.

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.

Gosh, it’s such a huge thing and maybe carers know it already really, basically. But I would say it, because I know that over years and years, carers themselves will become ill, you know. Quite a lot of the carers themselves become ill so. And I personally, -I think I may be a, a bit depressed because some friends have noticed me, and I would hate to confess to it, that I’ve been depressed. But things have kept me going, like my job, I’ve been, as I said, I’ve been very fortunate. My friends have kept me going. Philosophy has kept me going. So if there has been depression I’ve just accepted it as a part of everybody’s life, not just my life. I’ve felt maybe everybody is, human being goes through these ups and downs. And there’s nothing that can be done except just carry on and it goes, passes, unless it’s to such a degree that you need, then, help really. But health as well, -because my health has suffered and whether it’s that, it’s directly as a result over this part of the living, but I know that, you know, it is even much more essential for people caring for people with mental health problems that they look after their health, they find time to do things for themselves. Although, there’s probably not a lot of respite available but find some kind of activities, which forms as their respite. Try and empower the service user as much as possible because as carers we want to do everything for them really. And if there is no advice, no help, then I think, -and especially parents who look after their children, they carry on looking after them, providing accommodation for them. But I would suggest that early on, even if it’s very painful, to let them go. Let them live independently because that then creates that distance a little bit. Because one of the other worries of carers always is that, when I grow old and die whos going to look after this person? If carers are always going to be worried about it, it’s better that they have that difficult experience earlier on, and let their child or sibling, or whoever, parent, live independently. Because then, -I know it’s difficult, you know, and I don’t know how it works out, but as far as possible. Then if there are services, they will come in. Even when, as in my case where maybe there are no services that come in, but at least you’re aware that that person is living independently, and they’ve got their own home, you’ve got your own space. Because if I, as I said earlier that, if I had to live 24 hours with my brother, all in the same space, I know I would lose my temper much more quickly. And I would find it harder, much, much harder.

I feel angry with agencies because I feel that they bring out regulations and laws and things but they’re not really, really prepared to help carers. I’ve had quite a few experiences where I’ve, you know, I suppose in the end I’m quite angry with the primary care system, with the GPs, angry with social services and angry with mental health services. I’m angry with all the agencies like pension services, all the people who are front line workers, as well as people who actually make decisions. Angry with them all, and yet I do have understanding because I, in my own life I can, 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.

But I also needed to take that anger out, that this was the only supporting visit of someone else coming in from a professional point of view. And compared to all the time I spend trying to keep my brother well in the community, alive, why could they not see that 10 minutes once a month meant so much to me? But they refused and I’ve had to, -and I suppose maybe I was wrong, you know, because one just doesn’t know whether it’s the wrong thing to do, or right thing to do. And my brother has survived. I have survived. Has it made any difference? I suppose I’ve taken all our stress. And am I able to take the stress? Yes. At the moment I am, so maybe they were right. But maybe I was undervaluing how much stress I can take. But is it fair? And I think, no, it’s not fair.