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David Y

Age at interview: 52
Brief Outline: David has cared for his partner for many years. Nearly 20 years ago she was offered ECT and David decided she could have this as he was told this was a last resort treatment. David felt she didn’t benefit from it at the time and years later she still suffers from memory problems.
Background: David is 52, lives with his partner and has children. He is a full time carer and describes his ethnic background as White British.

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David said that he didn’t notice his partner’s illness initially. He was working long hours and they had has a young child and so he was very busy. At the time he wasn’t aware that she previously had had an episode of mental ill-health. David thought his partner was just very lethargic and put it down to stress as they had just moved house and she was pregnant with their second child. At a party he felt she wasn’t “right” as she didn’t get involved in anything and he started to notice that she was doing strange things around the house. They called the GP out and she was later admitted to hospital as she had lost her sense of reality. David had never seen inside a psychiatric ward before. He was not impressed with the ward as it just had a day room where people smoked and watched television. Although he says the ward wasn’t ‘violent’ as such, he felt that the people there weren’t properly cared for. The staff didn’t interact with David and he said they barely interacted with his partner. Although his partner was an inpatient, she came home for the weekends. She would sleep 18-20 hours a day. As it got closer to her due date, she was taken home as David was told the ward was not equipped for mothers and babies. His partner gave birth and afterwards she didn’t know ‘what was going on’ and slept a great deal of the time. 

During his partner’s pregnancy, she had taken a low dosage of anti-depressant medication. His partner was offered ECT about a month after the birth of their second child. The consultant said that ECT was a last resort and David decided to consent to it because he was so desperate. David didn’t know much about ECT and thought his partner would only have a couple of treatments, but was told she would have up to 12 treatments. He didn’t feel he had a choice because he wanted her to get better and thought there was nothing else that would help. When he asked for more information he was only given a small leaflet. He wanted to know a lot more about the details of the treatment and why patients got headaches after their treatment. The treatment was carried out in a portakabin where was no room for him to wait. When he saw his partner later, she couldn’t open her eyes and didn’t say anything. He used to take her a drink and she would be trembling whilst drinking. He said that she complained of a severe headache. David didn’t know much about the possible side effects of ECT, including the risk of memory loss. 

After ECT, there were no visible signs of improvement in his partner. One time when he visited her, he told her he couldn’t visit anymore and was surprised that she cried in response to this as it had been so long since she had shown any sort of emotional response. He now thinks that that was the first sign of her returning to health. His partner was given a diagnosis of schizophrenia with negative symptoms i.e. being withdrawn and being emotionally ‘flat’. 

Although David knew people who had benefitted from ECT, he felt that the health services should have taken better care of his partner. He felt his partner was just given paracetamol and not told anything about the procedure. Now his partner wishes that she had never had ECT. His partner’s memory is still poor and she finds it easier to remember things prior to her illness. His partner is now a lot better, although she is still on medication.  

David has struggled with his own mental health and had a breakdown. He had to give up his job and was referred to psychiatric services. He didn’t know what sort of help could have been in place to help him with his caring responsibilities.  He only really learnt about mental health services when he became a service user himself.
 

David Y’s partner was pregnant and had a toddler when she first became unwell. It was only when they went to a party he remembers people noticing she was withdrawn, and two weeks later she was taken into hospital.

David Y’s partner was pregnant and had a toddler when she first became unwell. It was only when they went to a party he remembers people noticing she was withdrawn, and two weeks later she was taken into hospital.

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I, we’d got a young lad, a little toddler and I was working and so with the hours I did I didn’t notice too much at first and I’d gone up to, I’d gone, taken her and we’d taken the lad and myself up to see my mother who was, well there was a party going on and my partner, she just seemed to sit there and not say much and others kept saying “Is she alright, is she alright?” and so I’d say “Yeah she’s alright, just tired.” 

But then as the next couple of weeks went on it became more and more noticeable that there was something not right and so I called the doctor. Doctor said oh yes I’ll have somebody come out next day to you and I thought well okay but she’s not well, she’s doing all these daft things. So next day came, “Yes she’s suffering from a psychotic illness,” “What do you mean?” “It’s a psychotic illness I can’t, I don’t, I can’t tell you the in’s and out’s,” “Okay”. So there was another, he said I’ll call somebody else out, she come out and yep, “We need you to go, take her to the parent and baby unit.” 

So I went up the parent and baby unit and they had a chat, “Yes, we think there’s definitely something wrong and we need, we think you need help.” And so yep, “We’ll take her over to the hospital, we’ll take her over to the [hospital],” “Okay.” And so taking her over, take us over to the [hospital] and want, she got worse travelling over there and we saw a consultant on the ward, “Yep, she’s going to have to be admitted” and she said, and the consultant turned round to my partner and said “Do you know where you are?” [Pause] “No,” “Do you know who this person is?” “Yes.” She says “Shoe Sales Assistant,” and I thought well thank you very much, that’s what you think of me, so yes she was definitely not right. 
 

David Y thinks recovery is different for everybody and it isn’t just about going back to work but it is about being able to live a useful life.

David Y thinks recovery is different for everybody and it isn’t just about going back to work but it is about being able to live a useful life.

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Recovery, recovery is to be able to, to live a life that is easy for you. If you views recovery as, when you’ve recovered you’ll be working, that is how Government looks at recovery, recovery is to be able to live a life that you can do and it’s different for everybody. For some yes its working, for others it might not be work, be paid employment it might be voluntary, you know, employment, or for some it’s just about working and living at home. 

To be able to get up in the morning, that’s recovery for somebody, it’s not all about going into paid employment to the end of the day that’s not what recovery’s about, it’s about being able to do things so that you can live a useful life for yourself. 
 

David Y said the hospital staff didn’t interact with him or with his partner who was having the ECT.

David Y said the hospital staff didn’t interact with him or with his partner who was having the ECT.

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So how did staff interact with you in the first hospital that [name of wife] was in?

They didn’t, they didn’t interact with me, they didn’t interact really with [name of wife] except to say we’re going to take you for your ECT now, just going to give you this injection now, that was it, come out of it and here’s a couple of paracetamol, have a lie down and that was the only interaction that she had with that.
 

David Y doesn’t think ECT helped his wife. Now, twenty years on, she will talk about something that happened months or years ago, which she thinks has just happened.

David Y doesn’t think ECT helped his wife. Now, twenty years on, she will talk about something that happened months or years ago, which she thinks has just happened.

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I don’t know whether the ECT actually helped her or not. I mean they say it kick starts, re-kick starts the brain for them and it would take, it seemed to take too long and then to turn round and say it worked, I don’t think it did.

And I know you talked to me about the shock of finding that there was memory loss in the short term, what’s been the effect on memory, if any, in the longer term?

She still doesn’t know or can’t remember the things that she’s done with the kids. I mean whether that is because of that I don’t know, she couldn’t remember, it’s easier for her to remember things prior to her illness even now than it is since. I’ll always have things repeated numerous times and it gets, to be told oh I’ve, I’ve seen such and such a body today and I’ve seen such, and you know full well that you’ve heard this story seven times today but it happened six months ago, that I just sit there now and say yes, yes [inaudible speech] yeah, yeah anything for a quiet life. But still she tells me things as if it happened just, but I know full well it was months ago, in some cases years ago.
 

David Y had to leave his job so he could bring up two small children when his wife went into hospital. He had no income and wasn’t told about all the help and financial benefits that were available.

David Y had to leave his job so he could bring up two small children when his wife went into hospital. He had no income and wasn’t told about all the help and financial benefits that were available.

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Yes I mean I was trying to motivate somebody who only wanted to sleep all day, even though she was more responsive. Bringing up two, a toddler and a new born. 

And I didn't know there was extra help available, I didn’t, I’d had to give my job up so. Well they put me on incapacity benefit so that would help me because I’d had to give my job up to look after the family, they didn’t tell me what help was available. I said I didn’t know about all the benefits, didn’t know it but I’d been toddling backwards and forwards to the hospital and didn’t realise I could claim for that, which would have helped because it put a, had to do everything and had no money and you end up in debt. I didn’t tell her what had, you know, it didn’t help because of her, trying to help her had put us into debt. I didn’t tell her anything of that. Didn’t tell her that I was borrowing left right and centre, she just, well she didn’t know, she didn’t know what was going on. 
 

David Y says the dormitory in the psychiatric hospital where his partner stayed twenty years ago wasn’t a nice place. They weren’t looked after and there were no therapeutic activities.

David Y says the dormitory in the psychiatric hospital where his partner stayed twenty years ago wasn’t a nice place. They weren’t looked after and there were no therapeutic activities.

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And had you ever seen inside a psychiatric hospital before?

No, never. This one it’s a dormitory type but you had, one part you had the day room then the office, the consulting offices, you had a corridor, then you had women’s dormitory then after that you had the male dormitory and so the men had to walk all the way through there before, to get to their dormitory, it wasn’t right. And then at the end they had a little space where they could have a, like a little table tennis table up, well they had some, in the corridor from the day room to the dormitories there was some single beds where they had the observation, those under observation where there and at first [name of wife] was in one of them and she was taken some flowers, she put them in the vase then cut them all up and stuck then in the vase again. She’d got this vase with them all cut up flowers [laughs]. I’ve put them in the vase, [laughs] yes of course you have. 

So but there, it wasn’t a nice place. She was on the ground floor dormitory a ward and there was another ward above which was worse, they had some more, they weren’t, they weren’t, it wasn’t a violent place it was very low, you had people with day, like more day to day illnesses but it wasn’t, you wouldn’t, you weren’t looked after, you cared for, you weren’t helped. You would just do what, what you wanted, it was, and it was a different thing then. I mean I went to the like the main psychiatric unit, the old asylum, [name], the only thing that was missing from there at one time was the swimming pool, it was the same tile up around everything, the same thing, the only thing missing [inaudible speech]. They used to do therapeutic activities, there were computers, there was gardening, there was woodwork, there was everything going on you know. But at the hospital my partner went to, nothing, there was a day room that was it and they went in there they smoked they watched the television and that was it. Very little interaction, I mean fortunately enough that’s gone now, the old asylum’s gone as well, got a new hospital nobody wants to go to… because they got rid of the hospitals but they kept the staff and some of their tactics, some of what went on came with it. 
 

David Y’s wife was a voluntary patient who was threatened with a “section” in the early 1990s if she left the ward. He now knows this should not have happened.

David Y’s wife was a voluntary patient who was threatened with a “section” in the early 1990s if she left the ward. He now knows this should not have happened.

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And did you know anything at all about, you know, mental health law or your rights in the hospital or those sorts of things?

No and there was none, there was none available at the time, you can go into hospital now and there’s, you can get the information and I’ve learnt about the mental health act of ’83 and 2007 [inaudible speech] and health, my rights about being on a section and how a nurses holding powers and things like that, oh I’ve learnt all that.

And was [name of wife] ever held in a section?

Oh she was threatened, she was threatened that if she ever left the wards she would be brought back and put under section which they shouldn’t have done in the first place, they could even then, when she was being treated, they couldn’t say that that’s what they would do to her, yes a nurse has holding powers but the nurse could hold her there and the doctor could review that and have his holding power but you shouldn’t tell people if you leave I’m going to have you brought back on section.
 

David Y was told that ECT was a “last resort” treatment for his wife and he felt she needed something so he agreed. She didn’t want ECT and he feels a sense of guilt.

David Y was told that ECT was a “last resort” treatment for his wife and he felt she needed something so he agreed. She didn’t want ECT and he feels a sense of guilt.

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Another thing what, with how I saw her, no life on the days that she had it and being unable to do things, to tremble, not be able to drink a cup of tea properly because she couldn’t hold it, her whole body was still shaking. And this was hours later… and it’s, it’s not the easiest thing to say somebody can have ECT treatment but I said yes because I wanted her to be normal, to be a mother, I didn’t want her to be a virtual zombie. And then to be told it’s the last resort anyway, you kind of feel well if that’s, if they’ve done everything they can for her so far and what does it then, then she better have it. And I’m, I have to carry the guilt for that. And also because as I said earlier she didn’t want it, she couldn’t make that decision at the time though.
 

David Y says people should find out as much as they can about the process and effect of ECT and find out about alternative options too.

David Y says people should find out as much as they can about the process and effect of ECT and find out about alternative options too.

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I would ask them to make sure that they get information about what ECT is, how it’s done, how long it lasts for, what are some of the affects that may happen, don’t just take it as a last resort. Find out what, what therapy, what treatments you can give them, what therapies are available still, what are the options don’t just take it as last resort because it isn’t, no. It’s done because of necessity, they don’t want people hanging around in hospitals too long, if we can get you functioning and if you’re functioning everybody gets, if it works properly everybody would have it, don’t. What I would say, you know, find out about it, fine out how it works, how long it’s going to last for, what are the affects for the person who’s receiving it, what help is available and don’t take it as a last resort.
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