Getting information about ECT

People we spoke to had often received information about ECT from medical health staff in the form of a leaflet or through a discussion with their consultant, or from the Internet. Some people found the information that they received very helpful, and others said they were so unwell they didn’t really want much information or couldn’t take it in. But some felt strongly that they did want to know more about ECT. You can read more about people’s first reactions to ECT here: ‘First thoughts about ECT and finding out more‘. People who had had ECT a long time ago, like Albert who had it in the 1960s, weren’t given any information about the treatment or possible side effects (for more see ‘Side effects of having ECT‘).

This summary is about people who wanted to find out more about ECT. It wasn’t just getting more information that was important but also the way information was given and the timing of the information. For example, Cathy said it would be best if medical staff discussed ECT long before people got to the worst stages of their illness. By the time they really need the information, they are often in crisis and not well enough to absorb it. Catherine Y argued that as long as a person has some capacity to understand what is being said, they should be given information. She said it can help to give examples of how others have responded to ECT along with detailed information about ECT so that they can weigh up the pros and cons for themselves (for more see ‘Messages to others‘).

Sheila had some knowledge about ECT from when she worked in a mental health unit twenty years ago, but wanted some up-to-date information. Getting more information gave her a bigger understanding of ECT.

Age at interview 64

Gender Female

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You said you had a look online and read leaflets and so on. What was it about ECT that you wanted to find out?

Just really a bit more up to date, what it’s like now, rather than, you know, years ago. And obviously I feel now I’ve got more of an understanding of mental health than I’ve had in the past, because I try and go to meetings and things or any help that I can get. I try and go to them. But yes, I mean they obviously explain that it’s not as bad as it used to be and that, you know, the leaflets were really sort of just explaining exactly what goes on, and that you’ll be put to sleep and you know, you’ll be woken up not long afterwards, because I mean like the patients don’t know how long, you think oh ECT, is that going to take an hour or, but it is a very, very short, you know, short time that you know, you’re back in the recovery room and things like that. Yes, it just sort of really helped me understand it even more, because when I was actually working with it I didn’t have, well we didn’t have the internet then. So you know, I didn’t really know much about it. So it gave me a bigger understanding of what it’s like.

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What people wanted to know

People wanted to know what to expect from their ECT treatment including:

  • Whether ECT was going to help them feel better
  • How long it might take to work
  • How many sessions of ECT they would have
  • What would happen on the day of treatment, and
  • What the possible side effects might be

Some wanted more detailed information about ECT than this, for example:

  • How long the electric shock lasts
  • How it works
  • Why it sometimes doesn’t work
  • What causes the side effects

Catherine Y wanted to be able to clarify with the medical team things shed heard from other patients about ECT.

Age at interview 41

Gender Female

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I think what they didn’t do is they didn’t really explain anything about it. It was, it was just, they just said, Right, theres a decision. You can have ECT or you can change your medication. But there was no discussion about what ECT was, what it would involve, how many sessions I would have, you know, side effects, all that kind of thing. I think, because I wasn’t given any information, I d-, how on earth was I supposed to decide with not being given any information? It was just like, Well, come back to us when you’ve decided what to do. But, you know.

And what did you think ECT was? I mean you described sort of having seen it on TV and that sort of thing.

Well, that, yes, that’s exactly it. That’s, that’s, I thought it, well, I really thought, you see people, I mean they talk about obviously being, you know, being given an anaesthetic to be given ECT, and I’m thinking, Well, why do people jump about when they’re given ECT? You know, I don’t know. What’s that about? And then coming round, obviously other patients, you see them when they’re coming round. They didn’t know where they were, they couldn’t walk properly, having a really severe headache, memory loss, quite significant for some people afterwards. And somebody did say that they felt that they’d been permanently damaged by it. And all of that kind of information, it was like, Well, actually I don’t think I want to, really want to go through with this.

You were saying somebody said, was that from literature or somebody you knew?

It was in the, in the wards, yes, it was other people in the wards kind of saying, saying things like that. And I think it probably would have been more helpful to have had some discussion with the medical team exactly to clarify all the different kind of questions that I had about it and my husband had about it. And to also cla-, sort of ex-, explain to them what I’d heard from other patients and actually, Is, are these experiences real experiences and, and is it something to watch out for? What h-, what’s the percentage of incidence of that happening? that kind of thing. But there was, there was no kind of information that came forward about that.

And I think, I think I just, I just didn’t know enough about it. There was too much kind of, you know, What does it do to the brain? They told me the understanding of how it works, but what does it do? And I think if you’ve got that gap where you don’t know everything about it, I don’t know if you can really, it’s an individual decision, I think.

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Many carers wanted to be well informed and involved in decisions about their loved one’s treatment. David Y was told his partner would have a few treatments. He thought that just meant 2 or so, and so was surprised when she had twelve treatments. Sometimes medical staff appeared to give carers conflicting information, for example about whether they could see their loved one before and after the ECT. Some carers felt they were just ignored.

Matt said he was promised he could see his wife straight after her first treatment and later told he couldn’t. He felt he wasn’t taken into account or given much information.

Age at interview 36

Gender Male

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So yes, and I remember the first one was on a Friday about 9 o’clock and I remember dropping the children off at school and then trying to get up to the hospital in enough time, so that I would be there when shed, when she came out. And I discussed that with somebody on the ward, or with her consultant or someone, and I had been told that that was absolutely fine. And I couldn’t be there while it was actually happening, but I could be there as soon as she came out of the recovery room.

And but then I got up to the ward and you know, nobody knew what I was talking about, you know, and I went to the ECT Suite and there wasn’t any way in. There was nobody there. I went to the ward and they said, Well that never happens, you can’t, you can’t do that. And that was a fairly kind of common theme, the whole kind of period of, of [name of wife] being ill, was, was my role as her partner. And just not really being taken into account very much, and you know, not getting much information , not being asked for my perspective, you know, not, not, how are you doing?’, but how do you think [name of wife] is doing?’

I was the person who was spending most of the time with her you know, and when she very first became ill, the Crisis Team came out to see her, and didn’t even say hello to me, just literally, just had nothing to do with me at all. Didn’t say, what do you think’s happening, what do you think the problem is? Nothing at all. And that just kind of kept happening.

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Where to get information

People we spoke to mentioned a number of places where they had gone for information about ECT, including:

  • A public library
  • The internet
  • Speaking to their GP, consultant or other health staff
  • Speaking to other patients and friends who had had ECT
  • Attending user groups
  • Phoning up and/or going to meetings held by mental health charities such as MIND and Hafal

Matt and Catherine Y found some information on the internet quite helpful, such as an information sheet from the Royal College of Psychiatrists. But John Y read stories about ECT ‘changing your personality’, long-term memory loss and loss of creativity. He was sceptical, and concluded that ECT was a bit ‘hit and miss’. Alka wanted as much information as she could get, and found American websites were good at providing links to further information. She said it would have been helpful to have had signposts for further information from medical staff.

Others had found it most helpful talking to people who had experienced ECT, either at the hospital or through charities and user groups. Quite a few people, especially those who had had ECT in the past ten years, spoke about getting good information from medical staff. People’s experience of how ECT was explained to them suggested an improvement in the way the health professionals communicate with patients and carers over recent decades. However, a few people thought some medical staff played down the side effects of having ECT (see for more ‘Side effects of having ECT‘).

Lorraine and Anne were worried about their mother having ECT at first but read the leaflets, looked online and talked to people at the hospital who had had it and were able to ask a lot of questions.

Gender Female

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Can you remember what you were thinking during, during that appointment?

Lorraine: Oh, yes. I mean I instantly looked at Annie and I went, Oh, no, no, none of that. And I just, the thought of it just, even now, even though shes had them treatments, she looks so well, the thought of it still makes my blood go cold really. But, you know, I thought, he just talked us through it, give us leaflets and booklets and we sat and read them.

Anne: He was very good, very good, weren’t he?

Lorraine: Went through on the Internet to find things out.

Anne: Yes.

Lorraine: And then we went back again and had another chat with him. So it wasn’t a, you know, just an instant decision. We eventually said, We think you’re right you know, and

Anne: And I think had there been a website

Lorraine: Yes.

Anne: — that you could speak to somebody. Because as soon as we got to the hospital and you speak to people

Lorraine: Yes.

Anne: — and they say, It’s marvellous, you know. Weve got this out of it, it then puts you at rest then

Lorraine: Yes

Anne: — don’t it, Laura? You just think, We have done the right thing.

Lorraine: Yes.

Anne: You know…

What was the information that you were looking at, the leaflets and you went on the Internet and so on, what were they saying?

Lorraine: Just saying

Anne: They were telling you the procedures rather than what people had, had found. You know, had, there was no one, there was no, no, nothing on there to say, Oh, I’ve had it. Where if wed have, you know, it’s like that website, isn’t it? If you went on and found out things.

Lorraine: Yes.

Anne: But it was more about the procedures and what they did.

Lorraine: Yes.

Anne: And I think at the time that’s what we were looking for.

Lorraine: [mhm]

Anne: You know. But actually we needed to probably click on ECT, find out if you could have seen anybody

Lorraine: Yes.

Anne: — or spoke to anyone and asked them questions.

Lorraine: Yes.

Anne: But I think because wed got this in our minds from many years ago, it was almost like, Oh, God, it’s that treatment again and, but it’s got to be different now. Times have moved on you know.

Lorraine: Yes. The booklet was really good as well.

Anne: Yes.

Lorraine: Because it told you where it started, how it come about. And then it went to people who’d ridiculed it and said, This shouldn’t be allowed to a group of people who said, It should be allowed. And then, you know, then the history of it, and then in the middle of it was about, it completely went out of fashion altogether and then suddenly come back in in the 70s and how people, there was a few comments of people who’d had ECT, it had, really, really had changed their lives and things like that. So the booklet was really good like that, but there was no people to talk to about it. And I remember Auntie [name] saying one of the, because she was in the mental health hospital for a while, she knew a woman in there who, she said she had ECT treatment but she was a young woman. So, and she said she was fine after it. And then our Auntie [name] said she knew somebody who’d had it, but again she was a young woman. And with us it was because mum was in her 70s, Will she be able to withstand it? You know, will it cause something else? And it was all that really as well. You know, the, because you can have strokes and all sorts of things and we were thinking

Anne: [mhm]

Lorraine: Well, are we doing the right thing? Are we going to make her worse physically? you know.

Anne: Yes, yes.

Lorraine: There was all that as well. So all, and there wasn’t, like I say, the information there. So when we went to see [name of doctor] after wed read the booklet, we just asked him questions about the booklet. And he said, Well, you know. What was his words in percentage? The percentage was like really good, wasn’t it?

Anne: Really good, yes.

Lorraine: And he said, you know, If it was my mum. What would you do if it was your mother? And he said, Well, I’d say she needs the treatment. Because the percentage was like 80 per cent was good and 20 per cent was bad. It’s worth the chance. So we went with that really.

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Despite getting a lot of positive information from his consultant about ECT, Tristan was concerned because this didn’t seem to fit with its use as a last resort treatment.

Age at interview 38

Gender Male

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I can. I remember the consultant talking to us about it and being very positive about it we were told repeatedly that the effects on memory would more than likely be short-lived; there was very little apparent evidence for long term effects which went against some of my previous understanding of it. which wasn’t very developed but had heard things and bits and pieces over the years and my understanding I suppose was that there was potential for it to have a more long-term effect on a person’s personality. So that I suppose I was reassured but also concerned that there seemed to be a bit of a mismatch between what I was hearing, it didn’t necessarily seem like it was really giving me the worst-case scenario. It was a very upbeat interpretation of the situation that there wasn’t much to be lost and that didn’t really fit with me as to why that would be a last resort treatment if it was, if it had a little risk and was often successful I thought it would be used more frequently so it didn’t quite add up to me and I was quite concerned about it.

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Some people had enough time to gather information, get shown around an ECT suite, and talk to staff and other patients. However, others felt some pressure to decide what they thought about ECT quickly. When ECT was presented to them or their loved one as a ‘last resort’ this could add to the burden. Sue said she wanted more information than was in the little A4 leaflet but she was in hospital and couldn’t access the internet to do any research (see ‘Deciding whether to have ECT‘).

Deciding whether to have ECT

Most of the people we spoke to were very unwell when they were offered ECT. Some were 'catatonic' (unresponsive) at the time, and others had...