There are millions of carers throughout the UK, many looking after loved ones who are serious ill, and the contribution of carers to society is increasingly recognised. Being a carer doesn’t have to mean physically caring for them (getting them dressed etc.) but can mean just being there for the other person, aware of their needs and providing emotional and practical support (for more see ‘Caring for someone with mental illness’ and ‘Family Relationships’).
This summary is about carers’ experience of supporting someone having ECT. When ECT was offered, carers were often relieved that there was something that might actually work. Steve said it was a relief to him when his wife was having ECT because there was a strong possibility that ECT could work. When Matt’s wife was moved to a new ward and a new consultant stopped her ECT treatment, he said it was “frustrating and upsetting…frightening that this thing that seemed to be working had just been kind of whisked away”.
Carers of people having ECT often wanted to be with their loved ones at the time of the ECT treatment, to provide moral support. Carers were not allowed to be there during the actual treatment. Yet many stayed in the waiting room with their loved one and spent time with them straight after the ECT in the recovery area. A few carers could not be there, e.g. because they had work and young children to take care of. Sheila, whose husband had ECT a few years ago, was allowed to go and see her husband before he went into the ECT suite. She was there when he was asked questions and when he signed a consent form.
Lorraine and Annie were nervous taking their mother to the ECT suite. However they found people there to be very friendly and staff talked through what would happen.
Lorraine and Annie were nervous taking their mother to the ECT suite. However they found people there to be very friendly and staff talked through what would happen.
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So what happened on the first visit when you went to the hospital?
Annie: Oh, it was a strange, it was strange…
Lorraine: Yes.
Annie: …weren’t, because –
Lorraine: Because it was so early as well in the morning. So everything’s sort of, it was, be freezing cold because it was December, I remember.
Annie: Yes.
Lorraine: The snow was on the ground. Mum was really, really ill.
Annie: Yes.
Lorraine: It was like, “Oh, this is like walking into –
Annie: And it was –
Lorraine: -- hell” sort of thing.
Annie: It was almost through the back door, weren’t it, Lol?
Lorraine: Yes.
Annie: We got there and we just thought, and it’s definitely –
Lorraine: Yes.
Annie: -- your upbringing, it’s your attitude to what you know, isn’t it, Laura?
Lorraine: It’s education, isn’t it?
Annie: It really is. And we’ve seen this you know. Through the back door you know. And –
Lorraine: Yes.
Annie: -- you know, it was just a unit and we were just, “Okay, let’s go.” And there was a lady there, [name], she’s wonderful.
Lorraine: She’s lovely, yes.
Annie: Wonderful lady.
Lorraine: She’s not a nurse, but she’s more than a carer as such, yes. And she just, she just took mum under her wing, didn’t she?
Annie: Oh, she was just, and put us at ease straight away, didn’t she?
Carers were sometimes asked to agree to their loved one having ECT (see ‘
Compulsory detention or treatment). This was difficult for some, but others felt well supported by staff and felt that having ECT was the right decision.
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.
Age at interview: 52
Sex: Male
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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.
Tristan found although he and his wife discussed ECT the decision was down to him and he didn’t feel overwhelmed. The staff were very supportive and they were shown the ECT suit
Tristan found although he and his wife discussed ECT the decision was down to him and he didn’t feel overwhelmed. The staff were very supportive and they were shown the ECT suit
Age at interview: 38
Sex: Male
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Well I guess it was probably part of the reason I was worried about it because I felt responsible for the decision. But I did feel that we were making the right decision at the time and I don’t regret it, although I have concerns about it. But yes, no I felt it was the right thing for me to be involved with it and I accepted that responsibility, and I didn’t feel overwhelmed by it.
And was the sort of physical process of, or practical process, of ECT explained to you?
It was. Yeah
You know when it was going to happen what was happening?
In many ways they were very, very good they did explain a lot of things to us, as I say it was more the way it was couched, rather than a lack of explanation. And the people at the centre were all very supportive and they did explain to me exactly what was going to happen. We went through together and went into the room where the ECT took place, before it happened and were introduced to the environment and the equipment and everything and shown how it, not demonstrated, but we were told all about it I think possibly on a separate day to when it did actually first took place.
However, some carers who would have liked to have been involved felt they were simply presented with the doctor’s decision to have, or to stop, ECT (see ‘
Deciding whether to have ECT’). Dafydd, Steve and Carys found the decision for their loved ones to have ECT was taken by their psychiatrist and they were not given much information.
Carys’s daughter had compulsory ECT at the age of 19, however, she was simply told the doctor had made the decision. She was not given any information about what was happening and it was not discussed with her.
Carys’s daughter had compulsory ECT at the age of 19, however, she was simply told the doctor had made the decision. She was not given any information about what was happening and it was not discussed with her.
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And on one occasion. I can’t quite, chronologically, I can’t quite remember exactly when it was. But I think it was probably after she’d been ill a couple of years they decided they were going to start the ECT treatment. Nobody told me anything at all about this. Nothing. I had no idea they were even going to do it.
And at this point she was, I went to see her. Oh, it was a hell of a journey because its twenty miles there and twenty miles back. And it was such a dreadful place, a really awful place. But anyway I went to see her on this particular occasion and she said, “I don’t know what they’ve done, but…” She said, “I’ve had, I think I’ve had some sort of electric shock.” So I said, “Oh my God, have you really?” I said, “Where did you get that from?” Because I thought she’d actually had an accident [laughs]. So she said, “I don’t know.” She said, “Go and talk to.” Well his name was [name], but what do you, the nurse in charge.
So I said, “[name of daughter]’s, you know, convinced she’s had some sort of electric shock” And he said, “Oh yes, she’s had ECT treatment.” I said, “What’s ECT treatment for God’s sake?” Never, never heard of it. Anyway he explained the whole thing to me and I said, “What are you hoping this is going to achieve?” “Well we’re hoping it will help her voices, her delusions etc. etc.”
So I obviously had no choice [sniffs] because she was an adult at this point. They carried on week after week after week after week, and I could see no improvement. I could see no difference. She was very scared, she was very frightened. She loathed it with a passion, she was so frightened of it all.
Last reviewed January 2018.
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