Well, at times, yes you might feel that way but as for me, I do get the break. But it’s just as if you have got a normal family, you haven’t, -you’ve got your children, can you take time off from them. No, you’ve got to be with them, but this is my family, I do, -I can remember last year I got a break, I got a break, but you get so -love and addicted to your family, like you’re not no matter that you, you do not want to leave them, -that’s for me, I don’t want to leave my family because as I said, I’ve got this understanding now about what I am dealing with, my husband’s sickness and the situation. So it’s just like, -I just live a normal life with my family. I don’t want, this is my husband, I just want to be there, not that if I don’t take the break, but this is just how I feel. Because it’s important to get breaks at times because you are human being, no matter how spiritual you might be but at times, yes, we need that break. So they have got the break in -the breaks at the centres, yes.

Every carer should have adequate respite. And by respite, -it’s very difficult because there are obstacles in the way of, obstacles on money. But if I could design it without any considerations I would say, yeah, good respite every, I don’t know whether every week or every month, but you should have some clear days in which for 24 hour period you do not have responsibility for the person that you are caring for. And moreover, sometimes, -you know when people come here and sit with Larry for three hours or five hours, like they do now, I don’t have the house to myself, I never have the house to myself. And I miss that. Because I used to really love closing the door, maybe putting a piece of music on and pottering around and doing. -And these are the things that you miss so much in your life really. So you don’t have the, so it would be nice to have, I mean this a utopia but it would be nice a place where it would be going from 8 oclock in one morning until maybe 8 oclock the next morning. Just go and you have your space and your time to yourself, and that would be fantastic. Maybe, you know, every fortnight, every month, but it’s really a human need, that you need to, -I know it sounds cruel, but you need to be free, even visually, of the person you care for. Because it’s becoming, it’s become so intense now, the relationship, because you are so, you’re always together and his needs are, you’re always aware of his needs, but nobody’s aware of my needs. Yeah. So there is that need of, -even if you don’t have anybody here to comfort you, but at least your space is yours and it’s quite’

And so anyway, I’d got to know about Rethink, and I don’t know who told me and I can only imagine it must have been either the psychiatrist or the CPN otherwise I would never have known about them. So I contacted someone and I used to go to a monthly meeting in the evening, which was quite useful, and. But then I still didn’t know much about schizophrenia, and really where -I learnt everything I know now is on the internet. There is a very good website, schizophrenia.com, and I just went, and then when you go to different websites and I just learnt, you know, I didn’t know there were several types of schizophrenias, I thought everybody with schizophrenia was, you know the same, had the symptoms, so it was really time to, I mean, to understand what was happening to him, because obviously he had no insight of his illness at that time. So it was trying to make sense of, you know, and what to do to move forward, basically.

In that when we go to the doctor, we talk to the doctor. The doctor should listen to what we say, if the doctor explains to her and to us, then its feels good. If the doctor tells her something but does not listen us then it does feel not right. If we go to the consultant at the hospital, then the doctor talks to her and if we explain to her, and so we understand a lot about some things. But if they talk on medical grounds then we don’t understand.

If they explained to you would that be better for you?

Then it would be good, good. What it is about whatever, interview dates or appointment. If you can talk to that person, if they give us a letter and we can show that letter then it is better. If it’s not in writing and we there will be some words we don’t understand. So we get confused at those times.

If you had the chance or the opportunity to change things to improve them, how would you do it? Can you explain to me again?

I would like it, I do not want an interpreter, but the conversation that takes place there, if it was in writing and you can get it, then we can keep it and talk to somebody about it. If someone, asks me, that you went today, diabetes nurse’s appointment. She talked to me face to face. It wasn’t such a big point that we didn’t understand. My Mrs right now has a bladder weakness and she cannot control urine. She wets herself. So they are going to put a pelvis ring inside. Somebody asked me, what is it? So I said they are going put a ring but we do not understand the word pelvis. If they send us a letter on the doctor’s report, and if they give to us, then we can keep it on our records and try and understand a bit.

What kind of information do you think should be available to carers?

Well, funny enough the primary care trust person, when I was visiting one of the clients in the hospital and they tried to put that client under the section, and I don’t understand those sections, so I asked the chap that what they do this and what they, -how it works, then he explained to me that if you, -and funny enough he is an Asian guy so he speaks my language, and he explained to me very simply that this is the thing that happens in society and they can, if you don’t agree they can put under the section.

So information in different languages?

Exactly, because if they simplify then we should not [need to] ask any other people. If the information is available in the local people’s language then they can read and they understand what is the problem, how their children or child or the patient are behaving in that manner, so they can find out that what is happening in their family or relative or in [cared for] people. So the language is the most important issue, and it’s a barrier to combine the two communities together.

In that there is one big problem. In NHS the doctors, the psychiatric doctor, every few months they keep changing. They are on this training course or that one. They keep changing. So far, my Mrs has had a change of three to four psychiatrists. The last appointment the psychiatrist I am going someone new will be coming. So if a new one comes, he will work in a new way, so it keeps changing a lot. If it stayed with consultant psychiatrist then it would be better. The changing of psychiatrists and the appointment that they give is time limited. If they spent a lot more time only then can they understand about their mental health and about their mind. They give just 10-15 minutes appointment how are they going to know anything?

So you want more time?

Want more time and the same consultant all the time would be good.

Anything else?

The other thing is the medicine that they give, the capsules. In some things, my Mrs has metformin, a diabetes medicine, it comes in a packet and a bottle. If it comes in a packet she will say that this medicine is different. So if the same packaging every time- what has happened is that in their mind is that the medicine has changed. Often her capsules that come, the colour is different so she will say they have given the wrong medicine. So the if the same package came continuously, that would be good too.

Someone to help mediate with the doctors and the nurses. Someone to have stepped in to support me to get the medics to acknowledge that my father wasn’t fit enough to be moved from the general hospital, to stand up to the Section Order. Because I didn’t, -later on my solicitor said, ‘Oh why didn’t I discharge my father from the section order?’ I said, ‘because I didn’t know how. I didn’t know what to do. So yeah, I needed someone, I think people in this sort of situation, they need somebody independent of the NHS, and the PALS workers are still employed by the NHS and I think they only seem to want to go so far anyway. That was my experience. And the more, you know, I was just really upset. I mean, I can see why I wasn’t, why I was, why was I falling out with people but I kept saying to them, ‘but this is a hospital. Aren’t you used to people having, being in traumatic states like this?’ And this is my dad who can’t speak up for himself. So it wasn’t just about my dad’s physical situation, was it?