So another thing, I feel they don’t know them, maybe that’s my feeling. They don’t know them, they see, they’ve got an idea and they don’t take enough notice of what the carer says. Because I feel I could have told him that he was, you know, muttering to himself, that he was holding, you know, his face in his hands and the suffering on his face, it was awful to watch. And that he was, -he couldn’t, -he was not seeing anyone, he was, he was not communicating, he found it difficult to have a conversation because that -his main problem is communication, he found it very difficult to communicate. I mean now it’s better but it’s still not what it was before he fell ill. And yeah. So I think, I think it could be, because I know they are going to try to, at the moment -. I have seen papers that they will sort of involve carers a bit more, so, I mean, to listen to what the carer says, because, I mean the carer lives, has to do with that person, -if not 24 hours a day but a lot of the day. And, you know there are lots of signs that she can, the carer can recognise that the professionals might not, or you know they might, I don’t know, -because my son was, he was, it was never very spectacular. So I don’t know what, you know because he’s never been to hospital, he’s never been sectioned, he’s never been hospitalised, so he’s always managed to stay at home, but he was all the same ill, and not functioning. Perhaps he was not a danger to other people or to himself, but he was still not well, and as far as I am concerned if you are not, -if you can’t socialise, if you can’t have even a part time job or if, you know, you can’t have fun with people, you are not well, -that’s the way I see it. Because sometimes I think that the professionals think, you know, he’s quiet in his corner, he’s not causing any trouble, he is stable as they say, ‘fine, he’s not in a crisis and.

Because at one time carers had no voice, they had no voice at all, nobody would listen, nobody was listening, no one was listening. But I think now the carers have got a lot more voice now and a lot more experience is coming out about what happened to people under the medical provision. So I think they’ve all taken it on board now, you see, because of the voices of the carers, you see, but one time the carer didn’t have any voice, we speak but we weren’t heard, do you know what I mean? Yeah.

Did you feel you were trying to speak out back then?

I did.

Yeah.

Oh yeah, as I said before, I went to a lot of meetings.

Did you feel that people didn’t listen?

No, I don’t think they were listening, nobody, they weren’t listening, they didn’t understand what it. Because they don’t understand what it’s like to be a carer, I don’t think they were listening at all, I don’t think they were listening, you know. There are a lot of carers out there, there is a lot. Not just with mental illness, both physical illness as well, a lot of carers out there and they weren’t taking any notice, you know, they just, they listened, but they weren’t hearing. But now the voices of the carers are being heard more, because they are speaking more. They are speaking more, because I think carers are getting a bit fed up of not being heard, fed up of nothing being done to help them and so now they are coming out and they are talking and they are listening. And I think more should be done for carers, more because it’s a hard job. I know the person we care for is our blood, it’s our blood, but we need, we need help as well, we need the support too, you know, and it’s only now that you find that things are getting done for carers a bit, things are getting done and we hope that it can get better.

Because the doctor said that -unless, -if he, -when they come to the hospital they have to sign certain papers and ‘you are bringing him here but you don’t sign the paper?’, I say ‘without my knowledge what kind of medication you are going to him, and if you are not explaining to me, how can I sign the paper?’ Then one of the social workers he said, ‘OK, I speak to your husband and your husband said yes’, I said, ‘no, what number did you dial my husband, my husband is not here, how can you do that?’ And then we had to take, -we take to the tribunal, -and then they know how it’s coming, they are bluffing. Then one day the doctor phoned me in the morning at home and said that, ‘Oh, I can’t give the treatment because he is not willing to take the medication. Then I had to fight with the doctor on the phone, not fight-fight, it’s a verbal fight, that -if the baby is, little baby is not feeling well and you have to treat them, the patient have to come to you then you have to treat them, you have to find out what was the cause for that, and you have to give the treatment. Similarly when they have a mental problem then you have to find out what’s the issue with them and then you have to give the treatment. You can’t say denied and say, ‘no, I’m not giving the treatment because he’s old enough. ‘If their mental state stabilised then they won’t have to come here. And then he have, -agreed with me and then say, ‘OK, I will see you so and so in the mornings about half eleven, and we will see you there. Then we went together, -myself and my daughter- we went together and said that how, then he said, ‘no, your daughter, you can’t bring your daughter in, because it’s just only you. ‘Say if you are using the medical term, certain words, and if I don’t understand you can’t explain to me properly and something happens I don’t know those things. That’s why I need somebody with me and only my daughter knows those words, terminology, and if you say no then I won’t sign anything.

And I went and sat in this little reception area in the corridor because all these nurses and managers all started running and so I felt like oh my God, like, Jorun, I was just traumatised from being attacked, traumatised at seeing my father like this. So then this junior doctor got me some water and he said, ‘it’s all right, it’s just all too much pressure isn’t it?’ And he was sort of understanding. Then this consultant, who wasn’t my dad’s consultant came out and he said, ‘come and sit in my office a minute and have a couple, I’ll just talk two minutes. So we sat in there and he said, ‘oh my dad’s got cancer everywhere and he’s got it in his lungs. And I said, ‘well I wasn’t told it was in his lungs’, and he said, ‘well it’s everywhere. And then he starts saying to me, ‘oh, how many brothers have you got?’ And I was going, -what’s this got to do with anything? ‘Three. ‘What do they do?’ ‘Nothing’, I said. ‘They don’t help my dad at all. He said, ‘oh, no, I mean what’s their profession. So I told him, and then I figured, he thinks that I need psychiatric care. He thinks that I’m sectionable or something or that I’ve got some problems, and I said, ‘look I know what you’re doing. There’s nothing wrong with me. I’m traumatised by the NHS, by what my father’s been through. He’s been on a section, now he’s back here. I said, ‘I don’t want to talk to you any more. I said, ‘I’m disgusted with this place’, and walked out. But you see, you could see one by one, hour after hour I’m just, in their eyes I’m becoming the problem and meanwhile there’s this elderly man full of cancer with dementia, ‘we might as well let him die because he’s got cancer everywhere. ‘He doesn’t want his drip in, blah, blah’, you know? ‘She’s written to the MP, there’s too much attention on this.

And I’ve got a good GP, she’s very, very good, lovely lady, doctor, Mrs. [name], and she has told me if I’ve got any problem to come and tell her, and she will try to deal with it. Sometimes a carer company will try their luck by trying to cut down on certain services, then, as soon as I notice it, I said, hold on what are you trying to do? Then there’s a bit of argument, then I tell them look I don’t want to argue, are you going to do it or not? If you’re not going to do it, I know how I can make you to do it, and then all that I do is ring the GP, and the GP rings up, that’s it problem solved, you know, this is it.

How did you get that good relationship with your GP?

Well firstly when we registered with the GP she was a lovely lady, and also we are from Sri Lanka, we respect the doctors and everybody, we don’t throw our weight about, you know, we respect them, and if you respect them and treat somebody kindly they will reciprocate. I remember once I went to the surgery, and there was a new receptionist, so I nicely asked her, she said, ‘why are you nice to us, normally people are nasty, we are a bit puzzled’, you know, that sort of a business? So we built up over the years a very good relationship, you know, so no problem, and also I read in the newspapers Gps and some of the doctors, their job is quite stressful, people come along and tell them the tale of woe and the problems. And I read some statistics that half of them become alcoholics, drug addicts, suffer from mental illness, so that sort of a business. So you also have to understand, they have problem as well, you know, but she’s good. Tomorrow she leaves, and if we get another GP whos not very good, then I go and change it, I’m not going to put up with it, yeah.

So basically they were going to let my dad die. They could have covered up all of their neglect. So, -but they weren’t feeding him and I know, I think they were just throwing the food away, because the way things were emptied, like the soup thing and the plate, it didn’t look like, because, you know. And also, because I’ve worked in a hospital I know what happens. So I went away for a while thinking I’ve got to go out for an hour, and I came back at about 5 oclock and I looked at my, -because I was always looking at my dad’s charts and I’m going, his blood pressure is going right down. It was like 75 over something. I’m thinking it should be at least 120, and my dad’s all like, and he’s lying flat. They were going to just let him die. So I got, -I woke my dad up again and I got him a drink and I said, ‘I’ll be back in a minute. I went out and there was this junior doctor on the ward and I said, ‘I trained as a nurse. Can you tell me what my dad’s haemoglobin is please?’ And he said, 7. So I said, ‘so when is my dad getting a blood transfusion?’ So of course they had to do it. He obviously checked with his boss, and then I stayed there until, -whilst he’d put the blood up and I said, ‘Dad’, because my dad had kept pulling out the drips. But they weren’t, -he was just so unhappy. He was like, it was just like I kept saying, well my dad shouldn’t have been back round here. He should never have been moved from this hospital.

Oh, clinicians do, they’re’ they say oh we can’t talk about it, it’s confidential. How are you going to, in my son’s case, they never had asked him whether, would you mind if your parents know what was going on? They never did. The letters say that just, it says of course we’ll have to get his permission. But they didn’t say whether they asked for his permission or was refused. He wasn’t. And that statement alone by both two letters, both letters gave a similar sort of meaning. Say we haven’t asked but you know. More or less imply that they may have etc. So whenever I notice that there is, ‘look I’m going to forward this information to the doctor, is it all right with you?’ Because his concentration is very low, we spend about a minute, ‘it’s Ok then, that’s it. But I have never done anything without telling him. Because I say ‘it is for your own good, if we don’t say these things, I know you’re not talking to the doctors, at least let me do the talking. Because the carer is with the patient 24 hours a day, seven days a week. Who knows better? If it’s a caring carer I mean. If it’s not a carer who wants to get’ send him off to a, you know, to a ward or something, that’s a different matter. But most of the carers are not like that in this country. They want to see their son or daughter getting better.

Yeah, yeah, but it’s about teasing out what’s going on, what the dynamics are.

Do you feel that health professionals do that?

No because I think they have a bias towards one or the other, and I think it’s also about resources, that if they were to sit equitably with all parties. But I think there’s going to be, there are going to be issues around the dynamics if they don’t do that, so half an hour with the carer, and half an hour with the person whos caring for them just to get their perspective. This is a difficult situation, because if somebody’s caring for somebody, and they say to the person whos assessing I don’t want my confidentiality breached, then the. The worker assessing them would have to honour that wouldn’t they? So it should apply for the person whos experiencing the problems. But I think where the problems are is when somebody’s really ill, and the carer is then, they sort of feel locked out of what’s happening.

Over there, one thing good over there, we have, when he was in New Jersey, we have two meetings a week, on Tuesday, it’s the parent and the patient, if I have a patient there, I will, -I can go in there and the patient and the parent, and there will be a head nurse or a psychiatrist or somebody there to organise the meeting. And my son can say anything to me and I can give a good, -and I can answer him back. Then a psychiatrist will say, -will tell my son he is wrong or I am wrong or something like that, you know. A friendly, -this thing. And to me, that is very, very helpful, because sometimes -you don’t say things in anger, things go better. My son has his view, I have my view, or my son wants something, I will say, I will try my best to do it. And that is very helpful. And on Thursday night, seven to nine, it’s only the parent meeting and the parent can voice the concern and every, -about the medication, can ask any question and can give all their views, which is, to me, is very helpful too, which we don’t have it in this country. And to me, to me that was very good, because one Sunday I went to see my son in the hospital and my son says, oh there’s no toilet paper and my son say, the patient had to use their underwear to clean themselves. So I was a little bit worked up, or something. I went to the office and here this woman, black woman, big black woman was sleeping on the chair. And I woke her up. I say, excuse me, excuse me, there’s no toilet paper in the toilet, and the patient need toilet paper. And she looked at me, she says, who do you think I am? A supply person? And I was, was really very annoyed. I say, you’re lucky it’s not my son otherwise I get a lawyer in. I would get the newspaper in too. And one thing was good, I was able to bring the matter up at the next meeting. The person which chaired the meeting was surprised, and she said to me, I’m glad you brought that up. We will look into the matter. And next week she came back, she apologised, she says, yes it did happen, and she made excuse for her. She has been working double shifts. But I said that’s no excuse, you know. And she says, thank you, thank you for giving attention to the hospital. We’ll make sure it won’t happen again. Because to me, all these meetings are important, because you can bring up what you see, you do not like, or you think is wrong.