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Sophie - Interview 09

Age at interview: 42
Brief Outline: Sophie has always had a caring role for her sister Angel. Angel is diognosed with Schizophrenia, but Sophie thinks this diagnosis is based on behaviour resulting from inappropriate medication of a mental disability and behavioral problems.
Background: Sophie works as a psychotherapist. She is divorced and the mother of two young children and is a carer for her sister. Ethnic background: Black Caribbean.

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Sophie is 42 year old Black-Caribbean women living in Manchester with her two children. She works part-time as a Psychotherapist. She is her sister Angel's main carer.  Angel , who is two years younger than Sophie  was born with a mental disability, and she also had behavioural difficulties growing up.  However, she didn't need any medication and got appropriate schooling. When she was 21, Angel went to live abroad with her mother, but returned some years later because she was not getting the services she needed. 

Sophie, who at that time was leaving to live abroad herself, helped Angel into the system back home. When Sophie returned to England in 1998 after seven years away, she was shocked to find that her sister had changed dramatically both mentally and physically. During this period, Angel had been diagnosed with schizophrenia. Sophie disputes this diagnosis, believing that the behaviour leading to the diagnosis was a result of the cocktail of more than 12 different drugs that Angel was now on. Sophie refers to research that show that people from BME communities are more likely to get wrong diagnosis and excessive medication. She believes people's perceptions and stereotypes of race can sometimes lead to unequal treatment.

Sophie says she had to fight the system over a number of years so that her sister could get appropriate accommodation and care. She obtained Angel's records, she contacted senior officers responsible for her sister's care, and she took an active part in the everyday care of her sister. She found it very hard to get the right information about how to approach issues and who were available to help.

Health professionals have now agreed that Angel needs to be taken off her medication so they can find out more about her condition. After years of being moved from one place to another, often in unsafe or disadvantaged areas, Angel, now lives in a place which Sophie thinks is acceptable. 

In addition to the issues of medication and safety, Sophie thinks Angel is not getting the personal care she needs to feel comfortable. For example, Angel's hair and skin need different care than 'white' hair and skin, but this is being neglected and she doesn't often get new clothes despite having her own money for this.

Sophie finds it sad that she and Angel are not able to enjoy what sister's normally do together. She grieves the fact that Angel won't be able to marry, have children and lead a normal life. While the constant worry about her sister is hard, she is concerned about what will happen when she is not around to fight for Angel.

Sophie believes she has a duty of care to her sister but that there is also a duty on Social Services, organizations and ultimately the Government to care for her. She says there should be a national carers' register so that carers can be listened to and their contribution can be recognised and awarded.

 

Sophie discovered that her sister was on a very large 'cocktail of drugs' and wonders who is...

Sophie discovered that her sister was on a very large 'cocktail of drugs' and wonders who is...

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She started talking about feeling depressed and that's what I was, -this is what I've been told and she'd been moved from home, well not homes, it's not homes any more, it was residential care from different places to different places, she hates changes, and only to find out that, you know, as soon as she's moved and in new environment, she becomes quite agitated and with her being agitated and upset she's been given medication and she's gone through lots and lots of different psychologists and psychiatrists. She never really stayed with one particular one for a number of years, it was always different, different ones, therefore medication was added and GPs added this and added that until things got really, really bad up until two years ago when I came, well when I was, -when I decided well I need to take part in this and see what's really going on because I had my own issues, I'd been divorced after all that and I was sorting out my life and only just to realise that she was in a state, it was, I mean an utter and total state with medication. By the time I sat down with the carers who were caring for her, the, -the Social Services who were caring for her and found out about the medication and her notes and got all her notes together, what I could get together, I was absolutely mortified at the amount of, eh, medication that she was taking. She was on at least 12 different medications. I have lists of them at home and...

What kind of medication, were they sedatives or...

There were sedatives, there were Haloperidol, there was… -all kinds, I'm only getting used to some of the names of them but there was masses and masses of medication and the medication had turned her into a virtual zombie. She'd ballooned up to size, eh, to over 22 stones, she's unable to do anything for herself and she was just totally comotised and it wasn't until I stepped in and said, well what's all this about, why are people giving her medication, what's the diagnosis? It was that kind of stuff that I had to get in there and try to find out and… I, -there was lots of stuff I had to sit down and say well, hold on now, why is this being given to her at this particular time, what's the diagnosis? I even met with officials, you know, and tried to get a clear understanding of, something had gone wrong because the final stages was, is that the people who were caring for her, who were kind of looking about her interests were saying, and some of the, one of the last psychiatrists that she'd seen had saying, 'I'm sorry she's on a cocktail of drugs that she shouldn't really be on'. Now this is what he said to me so inevitably they decided well, we have to do something about her and take her off all this medication and wean her off all this medication so we can find out what the situation is. So, you know, it's, -when I'm trying to say, well somebody must be responsible for all this.

 

If you feel something isn't right, speak out about it. Ask questions, make notes and contact...

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If you feel something isn't right, speak out about it. Ask questions, make notes and contact...

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Based on my experiences' Don't give up. If you feel something isn't right, you have to speak out about it and I think it's important. I think for a period of time, specially when she was going through being moved and after what happened with her being on TV and stuff like that, I had to make notes of things that, keep a diary of things that wasn't going right. I'd done stuff like that because sometimes when you're meant to recall lots of stuff, you can't, you can't because your head is so full of so much is going on. I think it's about asking questions, still asking questions about things that you're not sure about, that's one, -that's the main thing that I want to say to people going through the same thing as us. Find somewhere, find, maybe -there needs to be some place that you can contact other carers that are going through things similar to yours and you could offer your phone number or whatever because you will always learn different things from other carers which will be really good. So I think that will be a good thing and just to keep on at, you know, asking the right questions, being very clear about what you want for your, you know, for the person that you're caring for. Just don't give up and don't feel as though just because somebody's sat behind a desk who says that they're a psychiatrist, doctor or psychologist, what they're saying is 100% gospel is how it's supposed to be because they're human being and they get things wrong like anybody else and at the end of the day you have to, it's nothing wrong in questioning things over and over again until you feel fairly sure about what's going on, there's nothing wrong in that, you know. I think it's about carers need to be heard and from being heard, something needs to be done because we're powerless without powerful people behind us.

 

White British professional carers don't look after her sister's hair and skin properly.

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White British professional carers don't look after her sister's hair and skin properly.

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So it -definitely, I think it would have definitely been different if I was white and my sister was white in some instances and maybe somebody might be saying, well no, that's not true and I can say well it would've been different specially, even just the basic stuff like her care, her health care, eh, her care for her hair and her skin and those things. When those things are not even taken into consideration and I have to be saying, well this needs to be done and these things I bought for her and she needs to, you know, her hair needs to be looked after. You go back months later, how could you go back months later, can you imagine it and somebody's hair has not been combed. Now you wouldn't get up every day and not comb your hair, and stuff like that and yet she's got money there to take her to do this and if, if… Their excuse was, well she, sometimes she has a tantrum and blah, blah, blah. Fair enough' Bring somebody in to do that. There was always some excuse why this wasn't done and that wasn't followed up and why this product wasn't bought for her and that stuff so that alone tells you that race has, it is different, it is different, so I guess that kind of answers that question.

 

Sophie says we all notice race, but the problem comes when workers make decisions based on...

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Sophie says we all notice race, but the problem comes when workers make decisions based on...

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We can't eradicate somebody's race and their identity because when I'm sat in front of anybody, the first thing I see is race and nobody can say, well that might sound racist, it's not, it's what you see and you have to identify with that and it's a known fact that we all see that. I can't comprehend with anybody sits in front of another person and say they don't see race, they see a person, that's not true. You see race and then you see a person behind that. So therefore, my experience would have been -if I was a white women- that they would probably have seen white person. Obviously they had misconceptions or their perceptions I should say, of what they think about me as a white woman would have been different than probably what they'd think of me as a black woman. It happens, and don't get me wrong, I'm not saying everybody thinks that way and it's always about the race issue first and that you're going to be treated badly all the time but it plays a significant role, it plays a significant role because I think unfortunately there's lots of people who are not aware of culture, differences, you know. You shouldn't be embarrassed about that because we live in a society where sometimes we are alienated wherever and needless to say I think lots of these people who are in that job come from a white middle class background and they've probably never come into contact with people from BME communities unless they've worked in BME communities. So they haven't got a clue about how we live, how we express ourselves, how we do different things so for them, they come in with their misconceptions about how they view people of a different colour or whatever so obviously the way they come to their conclusions and diagnose people will be based on their misconceptions and their stereotypes about people of colour.

 

There need to be well funded carer organisations working for carers and 24-hour support services...

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There need to be well funded carer organisations working for carers and 24-hour support services...

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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.

 

Her sister's mental health problems meant Sophie's family stood out in the crowd when she grew up.

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Her sister's mental health problems meant Sophie's family stood out in the crowd when she grew up.

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You know, even just every day things like going out and going shopping and stuff like that. Of course her disability wasn't noticeable, you know, physically noticeable or anything but as she got older people were aware that she was either, what's the word they use, like slow or whatever they may see and you notice that people stared and done things differently and behaved differently and, you know, that was difficult as a child growing up and of course as a child you shun that and feel embarrassed about that but as you get older you understand well, this is part of your life, this is your sister and you grow up and you understand a lot of things, you know, about how life is for her. So that was, -that's changed us because at least I can honestly say that as siblings, we've got an understanding of mental health more than the average person. Even now I can see people, and I relate to lots of stuff that's gone on because of my experience and I don't know, maybe that's why I'm in the job that I do because I think it's.

 

Sophie has not looked for support because in her culture you are supposed to be strong yourself.

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Sophie has not looked for support because in her culture you are supposed to be strong yourself.

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Have you used any services, carer services yourself?

No I haven't, I haven't. I haven't at all. I just think it's part of being part of the BME community is that we always sort of believe that we can do it on our own and get out there and just do it all, we've got to. Whether you're a black woman or a black person, you just have to be strong because we're just meant to be. There is, you know, the stereotypical idea is that we all will just get on with it because that's just how it is but I think that's very sad still because I think we need somewhere else that we can share what we're going through with, because I think together, you know, we're stronger in numbers and be able to sort things out and have our say and make sure certain things are in place for our family members. We have to, we have to because things don't really seem to have improved over the years, that I've seen my sister go through the system, they haven't really improved at all. At all.

 

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

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

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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.

 

Sophie explains how coping with adversity is part of life, and spirituality or God can give support.

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Sophie explains how coping with adversity is part of life, and spirituality or God can give support.

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I've always been a spiritual person, a religious person in the sense, whatever, and I just think, well, these are the cards that we've been dealt in life and we just kind of have to cope with it and work with it and do the best we can of it. I think peoples' misconceptions that life is always going to be wonderful, you grow up, you have a wonderful childhood and you have a wonderful mum and dad and you leave home and you go to Uni, you get married, you have children and life's wonderful and then you die and that kind of stuff, but life's not really like that. I think we forget that and because of the experience that I've had in our family and what our family have had, it's made us look at things a lot differently than maybe the other average person and say well life isn't like that and there's pitfalls and you just have to make best of what you've got. Yeah, that's how I see life and how it's been. So, yeah.

Do you go to church, do you…?

I used to, I used to but I don't need to in the sense of, that's just a building with a few people in it, I think it is about my spirituality that I have and the connection that I have with my God, that's what helps me and that's what gets me through every day things, not just my sister's stuff but my own stuff so I guess coming from the BME community, you know, religion plays quite a role for lots of us and it is a good fortress. It is a good fortress in times when you feel as though you can't take it any more and you don't know where to turn, you feel like a good cry and hope that your prayers are answered. It's good because I think it's something else along with talking to a friend, it's something else so that's been good for me.

 

Sophie thinks the way people think about mental health needs to change.

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Sophie thinks the way people think about mental health needs to change.

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It needs to be revamped and changed and lots of things need to be taken into account about how we view, how everybody sees mental health and how we view it, you know. Even simple things like advertisements on the TV and stuff like that just to make people be aware of things. A lot of people are not aware of lots of things that's going on. They're not aware of diagnosis and helping people and they're just not aware of things and it's about, you know, knowing that you might have a five year old and that five year old is able to see that somebody isn't quite normal and there's reasons why instead of it being fun or some pointer or ridiculed or whatever or they're not knowing how to deal with it because it's part and parcel of everybody's every day life. We pass somebody in the street lying there who's down and out or a vagrant or whatever, or somebody that's eating out of a garbage bin or somebody that's, you hear on the news -and that's the time you only hear it on the news when people have mental health problems and have done something terrible and to think that there's thousands and thousands of people who are coping with mental health problems and it's only when the negativity arises that it's addressed and this should be done and why wasn't this person in proper care and that kind of stuff. And I thought how dare anybody question that when there isn't anything there to look after people who are going through that, there's nothing there for the carers, for myself and for other people that every day have to go through this system and try and be heard, there's nothing there really.

 

Sophie worries that her sister is taken advantage of in the residential care home.

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Sophie worries that her sister is taken advantage of in the residential care home.

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So it's frightening, it really is frightening because when they're out there in the system, they're taken advantage, -they have a disadvantage anyway which is their disability but they're even more disadvantaged when this, this system that is there to protect these vulnerable people is not protecting them at all in many, many ways in many forms. Her money used to go missing, it was just stuff like that, they never bought her any clothes and the things never fit her and just those basic things that would make her life a little bit more comfortable were not happening, were not happening. Who's responsible? I don't know. Where do you go? I don't really know, to take this further. As I said, it's not going to stop there because I still have to keep on fighting to find out how things can be improved, not just for her but for other people.

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