I feel more sorry for my two sons, now, because my elder son always says, I want to change my name. I want to change my name, because every time I tell somebody my name, they call me a Chinko. You see? I say, it’s OK, I said, but when you’re young you get angry. But to me, I’m so used to it, it’s nothing any more. But then again, I feel so sorry for them. -I don’t know, but then for my second son, walking down the street one day, somebody came and spit in his face. He turned around and hit him, and I think he got, -the police arrest him or something like that. And that night, a policeman came to the house and he said to me, I want to see your son. And I say,yes, sit down. And he asked my son, he says, what’s your name? Samuel. And he looked at him. What is your Chinese name. Samuel. No, I want your Chinese name. And he was furious. And he got the pen and whatever, notebook or something. I want your Chinese name, Chinese name, he kept emphasising. So finally I say, excuse me sir, excuse me sir, his mother is Irish. He doesn’t have a Chinese name. Then the next day, his CPN came. I told his CPN what happened, but his CPN is so good, his CPN said, don’t worry, don’t worry, I’m going down to the police station with him and I explain everything to them. And he sort out everything. -Even name you can have problems, you know! So just, -to me, this is so very hard.

The CPN popped in and out having given the necessary weekly injections. She was pleasant but told us very little. She refused to discuss anything about our son unless he was present! We now know that she should have done something about counselling etc and pointed us in the right direction for support. It was only after a couple of months that we heard about a carers’ support group in Wimbledon purely by chance.

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.

So we have two carers now, who come, with the hope that while one carer is doing the cleaning, the other carer holds her hands. Now, they never seem to hold her hand and all I can hear is, ‘can you put your hands together, stop hitting’ and the other carer will say, ‘you hit me, I’ll hit you back. Now she is, -lost her mind, but they will go on and on about it and it’s sad, because my aunt gets very worked up and with that, I get so worked up because -what I don’t understand is, that they know this is a helpless lady. Because the next minute, she will say, ‘thank you darling. Now, anyone can see she’s lost her mind. Now, one instance of the crudeness of the people who come to her, it is something I don’t even use the word ‘you bitch’ or ‘you cow, because to me it’s not ladylike at all. ‘But the other day, -about, -say about a month back, this Morning Carer, who always comes and always, -she’s good at her work, but she’s very rude to my aunt. She said, -my aunt asked her ‘what are you doing’? She said, ‘oh I’m cleaning the shit off your bum. Now that was so rude to me and my aunt said, ‘but who looks at my bum’? But what I meant was, I’m just seeing this meaning that the crudeness that comes from the people is something so difficult to put up with, because these are hale and hearty. They have their minds, they have the blessing of their good health and yet they talk to my aunt like that. That is something which is so, so difficult.

The next day there was another Indian girl staying here while I had to go out. Now this girl came correct at 5. The second girl came at 5.25. She did not reply to this girl when she said hello. They came at 5.25 and by 6, 5.40, that is just 10 to 15 minutes, they were out of the door. They didn’t talk, they didn’t say ‘we are leaving’, nothing. Now, this girl is new to the place. She was doing me a favour by sitting with my aunt. She just, -and recorded everything and went. I so happened to come at, -they left at 5.40. I so happened to come at, I’m sorry, 6, yeah. I came back at five past six and whenever I come back, my first job is to look at my aunt. So I charged into the room and got such a foul smell. So I said ‘the lady has done a big job, I can’t wait till tomorrow to change her. My cousin was there to help me, so I said, ‘please help me. So when I pulled out her coverlet to change her, I found a big lump. She has a knee divider put, you know, to separate, -a three pronged sort of gadget- to separate her legs, so they don’t stick together because of her paralysis. I found a big lump of, you know, her mess stuck onto one part of, the right side of that leg divider. Another big clump of it on the sheet where my aunt’s tie was. Luckily, I had come soon enough or my aunt goes, she’s, -her right hand is hyperactive at night, she goes tapping wherever she can, taps her eyes, ears, wherever, her body, everything. She hadn’t had the time to tap over there. So I came in the nick of time.

My cousin phoned up the home office and said, ‘I want someone to come right away to check what, how the carers have left her. So the lady said, ‘I’ll get someone to you. Somebody did come. Now that man said, ‘I’m sorry there’s nobody here that I can send. So my cousin said, ‘in that case, I would have to call the police and make an official complaint that this is how my aunt has been abused. So the moment he said police, he said ‘OK, tell me what it is and I’ll take the matter up with my seniors tomorrow. So my cousin explained everything to him and I had to clean the mess, because I didn’t have, I don’t do photography, I don’t have a camera here, but I had to clean that mess, because I needed to do it. But I wrote, -then my cousin wrote a, sent a letter again, saying that ‘please investigate this or I will take criminal, I mean, I will take action as criminal assault’, because it was nothing less than an assault, because the. You see, she was fully dressed. This is evident that it has been placed there after she was fully dressed. Now how can anybody do such a thing? They don’t like me, fine. They need not come to my house, just as I have a right to say, ‘don’t send so and so. They have a right to say ‘we don’t want to go there. So why come here and expose my aunt?

So my biggest problem is the carers, I feel, must have some sort of training. I feel the carers who come here, they are taught to use the hoist, but they are not taught anything about illnesses, about the minds of old people, how it hurts old people. Even the fact that you’re talking over them, can hurt the old people and mentally disturb them. There’s no training at all, as far as I can see. Absolutely no training. So my biggest problem in this whole thing is, I have this problem of the carers. And how to put up with it, because I know for them also, it’s difficult with my aunt fighting, pushing, shouting and all that, but can’t they at least understand this is a helpless lady? So my life is really very tough.

I remember once, many years ago and I am not sure which year, he was getting to have injection but it happened On Friday, I phoned the health centre to make an appointment for him to have the injection, but the health centre said the nurse was not there. I said to the receptionist that my son must be taken care of, if there is delay he would relapse. But on Friday it was said there was not people for the injection. I called on Thursday, and on Friday they said no people were there. My son could not receive the injection so on Saturday night he became emotionally very unstable, spoke chaotically. So I immediately phoned the hospital to seek help, and hospital asked me to call police. I said So I listened to them and I called the police, but the police said if he has not destroyed anything or hurt anyone, they will not handle this. I then said to the police, if they were waited to collect him until he hurts people it would be too late. I said to the police if anything happens then it is not my fault. The police said I know, I know. Then I called the hospital again, the hospital gave me the social work, the social worker, the emergency social works phone number. I called, on Saturday night, I called the social worker and I told the social worker the whole situation. At that time he lived separately. Living separately sometimes I found him speaking chaotically. He spoke chaotically on the phone and when I went to see him he was chaotically so I urgently contacted the social worker. The social worker told me to wait for him at his door on Sunday morning 10 oclock, and wait for the social worker to ask him to open the door.

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.

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.