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Agnes - Interview 29

Age at interview: 50
Brief Outline: Agnes has been caring for her daughter, who has OCD (obsessive compulsive disorder) and depression, for four years.
Background: Originally from Hong Kong, Agnes has lived in London for many years. She became a carer at age 45. Ethnic background: Chinese.

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English translation can be found below

Agnes' story

Originally from Hong Kong, Agnes is 50 years old and lives in London. Agnes has been a carer for her daughter Lily for 4 years.

When searching on the internet to understand how she was feeling, Lily discovered she was experiencing symptoms of OCD (Obsessive Compulsive Disorder). When Lily went to the doctor she was diagnosed with depression, and prescribed anti-depressants. Since Lily did not find the medicine helpful to her condition, she chose not to have them. Agnes feels that the care given to her daughter in hospital and by social services has not been good enough. Agnes believes that the hospital reports on her daughter's situation were written without properly talking to Lily. She came to feel that unless something dramatic happened - like a suicide attempt - her daughter's condition was not taken seriously by the services. She suspects that the pressure put on Lily by the services, for example to find independent accommodation, may have contributed to the suicide attempts she eventually did make.

Agnes does not feel that she as Lily's carer has been treated with respect by hospital staff. On several occasions she reported being asked to leave without being given an adequate explanation. On one occasion in 2006 Agnes and the hospital staff got into conflict over Agnes' role. Agnes said she wanted to give her daughter some vitamins as she was not eating very well. Agnes alleges that the hospital staff refused this request and further accused her of wanting to assist Lily with another suicide attempt. Subsequently, Agnes reported not being allowed to close the door to Lily's room and be left alone with her. Agnes found the idea that hospital staff might think she would hurt her own daughter very upsetting and hurtful. She believes Lily's suicide attempt should be the hospital's responsibility. Agnes has made a formal complaint about her experiences. Her complaint was yet to be resolved at the time of the interview.

Agnes feels that her voice as a carer is not listened to, and since English is not her first language, she also finds that many carer's services can't give her the specific help she needs. She believes better trained mental heath professionals are needed, as well as more independent, culturally appropriate services for people with mental health problems and their carers.

 

She thinks health care workers should show their patients more warmth and encouragement.

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She thinks health care workers should show their patients more warmth and encouragement.

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Is there anything you would like the hospital, NHS or hospital staff, mental health staff to know or to tell them? 

I want to say to them, I hope they give more love when treating their patients, especially patients like my daughter, because depressed people needs others to care for them and talk to them. Because without talk or appropriate treatment, or when they don't have a psychotherapist to talk to them they would feel more depressed and more like wanting to die. If you help her more, talk more, help her more they would at least not go down that path, right? If you give them more love and make them feel that there is warmth in this world and make them feel there are people who care for them in this world. They would not want to die because so many people help them and care for them. Because depressed people are not happy and if people do not care about them that is why they go this path. In my daughter's case, she likes to talk to people who are professionally trained. Usually daughters refuse to talk to their mothers but I try to learn from you lot. But sometimes I am able to learn and sometimes not. Sometimes it does not work.

 

Agnes was told she had to leave the hospital for her daughter's test, but was not told why.

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Agnes was told she had to leave the hospital for her daughter's test, but was not told why.

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Once I went to see my daughter, basically I went and see my daughter everyday, she was in hospital for nine months I went for nine months non stop except when she says she does not want to see me or does not want to talk as she is unhappy or have some appointments. Once I went to see her in the hospital, someone who worked inside said she has to go to the ward next door to check something, a test. I said 'ok, I will wait for her there'. I said to my daughter 'Daughter I will continue talking to you after you come back from your test'. And then, how do I say it, a worker came out from the office 'Mrs Lee, you have to leave', I said 'What is it, why? Tell me the reason why I have to leave.' She said, 'You have to leave' again the same action, same expression right.

I said, 'Explain to me because my daughter's only having a test, blood test, I don't know what test. I will wait for her to come back, it should be quick. Is there a policy that says I cannot wait or is there a room or any place I can wait, I don't want to leave her.' Right. 'Mrs Lee, you have to leave, to leave' like that. I said 'Explain to me, why I have to leave.' She was like 'You have to leave.' Like that. So I went back to the room and said to my daughter 'I have to leave, the nurse said I have to leave this ward. I do not know why.' She said, 'Why mum?' I said, 'I do not know.' It was raining outside as well, lucky I drove there I can hide there [in the car]] if not I wouldn't know where to go and how long to wait for. So my daughter went to ask the same question as me 'Why does my mum need to leave this place?' She said the same thing 'Your mum have to leave.' Oh my god, you need to explain why and what the reason is. She made me mad.

 

Agnes did not think her daughter's key worker was fair when filling in a housing application.

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Agnes did not think her daughter's key worker was fair when filling in a housing application.

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One of the people who she works with is her key-worker who is supposed to fill out the form for her. So he fills it out for her, but he fills them out that only allow her to get little points. He just made her get very little points. For example, she can get 500 points, he made her only get 50 or 100 points which means her chance of getting a council house is less likely. At the same time my daughter called up the community, it's the CRP, how should I say it, head of council house ah I forgot what it is called, I will tell you later. And she said, she did not come up with this suggestion, she asked staffs in the association 'Could he could fill in the form for her as her key-worker would not' and this is before he actually filled it out. They said, 'We do not do this, you need to find your key-worker to do it'. They then called up her key-worker and ask why he did not fill in the form for her and he said 'What. When did I say I would not fill in the form for her?' -saying stuff like that. My daughter was not trying to complain but she wanted someone to help her. When my daughter came back, he went to shout at my daughter. 'How can you call this association and say I would not fill in the form for you?' and my daughter 'You really did not fill in the form for me, I want to ask you to fill in the form for me and it is your responsibility to fill in the form for me but you would not fill it in for me'. He then took the form and filled it out, filling it out so when she should be getting many points she now gets little points like normal citizens.

 

After Agnes's daughter had attempted suicide, housing suddenly became available.

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After Agnes's daughter had attempted suicide, housing suddenly became available.

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You obviously feel that the treatment system or service is not good. How long has this effected you or been a disturbance to you?

A very long time. Since my daughter had problems. If they changed or my daughter got better I could think they have improved or it is good but there was no improvement except, how should I say it, thank god my daughter is still alive and they have, I do not know why, such a coincident, when my daughter was desperate to have a house they told her to move and since my daughter attempted to commit suicide they had a house for her very soon after it. Did not have to wait for long and it was very near. Why is it, is it that someone has to have a danger of their own life, how do I say it, to do, to do what, for my daughter to do something to damage her health, how do I say it, -self harm then they would take action and do things. You understand?        

Something serious happened. 

Yes, yes serious thing happened then they do something. Like if you do not kick them they would not move, if you kick them they would then move. At first when you kick them they say you do not respect them, if you do not kick them they would not care. Like that, I feel it is like that.

 

Because her English is limited, a Chinese organisation gives Agnes the best support.

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Because her English is limited, a Chinese organisation gives Agnes the best support.

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To be honest I do not have any support, recently I found the Chinese Mental Health Association who speaks the same language to help me out. I really cannot find any support because initially my English is not very good so cannot express what I want to say. Although' I do not think many English association can help me because they usually say they cannot help me because I am not the patient but only the carer. So at the moment I do have support but CMHA can help me and give me support.

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