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Electroconvulsive Treatment (ECT)

First thoughts about ECT and finding out more

Many people we spoke to said that when they or their loved ones were first offered ECT, they were surprised the treatment was still offered by psychiatrists. Some had negative ideas of ECT from TV shows and movies, like the 1975 film “One Flew over the Cuckoo’s Nest.” They said the media often portrayed ECT as a frightening procedure. A few people mentioned that they had noticed the ECT suite when walking around hospital, and were taken aback to see it or thought “they’re going to take me to the extremes and I’m going to end up there”.
 

When his wife was offered ECT Matt was surprised that it was still used as a treatment and felt scared, so he researched ECT on the internet.

When his wife was offered ECT Matt was surprised that it was still used as a treatment and felt scared, so he researched ECT on the internet.

Age at interview: 36
Sex: Male
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And when they first mentioned it to me, again as when I’d seen that sign, I was really surprised, really quite shocked that it was something that was being considered and it was quite, I guess it was quite frightening because it just seemed so different. You know, I’d got used to medication, I’d even got used to the idea of hospital and everything else, but ECT just seemed really different.

But on the other hand by then, we knew nothing else was working. And I was very open to any suggestions. …And also quite scared, because I knew that [name of wife] would react very strongly against the idea of, you know, she’s been reacting very strongly against the very idea of being ill, so I knew that this would be really, something really extreme that she wouldn’t want to get involved in.

So the first thing that I did. As soon as it was mentioned was I went off and looked it up on the internet. And I was really, I was really aware that sort of looking on the internet is problematic because you’re never quite sure where you’re getting your information from and you can quite quickly get into people with kind of maybe agendas and fixed ideas. 

But I came across some quite helpful stuff. There was one information sheet from the Royal College of Psychiatrists and one or two other things that seemed quite kind of level headed and quite kind of, you know, this is the evidence, these are the studies that have been done. This is, you know, this is what it is, for starters because I think I still had my kind of mental pictures from films. And actually to be told right, this is something that happens under general anaesthetic. This is the procedure, to how long it lasts, this is the after effects. That was really helpful. …And then you know, the actual statistics about its effectiveness seemed really surprising. Do you what I mean. I can’t remember what it was, but it was something really significant, like… oh I’m going to guess, but you know, like 60 or 70% of treatments are successful as opposed to 20 or 30% of medication courses. 

And it was kind of puzzling that nobody really seemed to have a clear answer about the process by which ECT might be effective, but then also nobody seemed to have much idea of the way in which medications are effective. And, you know, like I said, by then I just thought, you know, we’ll in a real mess, we’ll try anything that isn’t actually dangerous. It’s got to be worth a go.
While some people knew very little about ECT before it was offered to them, quite a few of the people we spoke to knew something about ECT. Dafydd’s relative had had ECT years ago with unpleasant results, but Jane’s father had had ECT and it had worked well for him. She said having ECT herself gave her a “connection” with him because the same thing worked for both of them. Tania’s grandmother had had ECT and her brother was a psychiatrist and had joked about it, but also said its effects were “incredible”.

Others we talked to had had medical training themselves and had seen ECT take place, or worked in an ECT suite. Some recalled stories of ECT helping people improve, and this gave them confidence in the treatment. Others recounted unpleasant stories or didn’t remember much about it. Some stories were mixed: Tracy had helped with ECT as part of her training as a nurse, and she remembered one particular lady making a good recovery, but then getting worse when the treatment stopped.
 

Sheila worked in an ECT suite twenty years ago and didn’t want any of her relatives to have it. When her husband was offered ECT recently she thought treatment might have improved and read up about it.

Sheila worked in an ECT suite twenty years ago and didn’t want any of her relatives to have it. When her husband was offered ECT recently she thought treatment might have improved and read up about it.

Age at interview: 64
Sex: Female
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Well my feelings about ECT go back to over 20 years ago when I worked as a nursery nurse in a mental health unit, and part of my work as a nursery nurse was to help out in the ECT suite twice a week, and I saw, I had to help, I had to be with the people when they were coming, when they were having seizures after the ECT and just assist in the ECT suite, and I always said I didn’t want anybody belonging to me or any of my friends ever to go through what I was experiencing. 

20 years down the line my husband has been offered ECT and I thought back to my words. Oh is this really what we want? Obviously things have changed over the 20 years but it’s still the same initial ECT. So I spoke to the staff who recommended it, I spoke to the consultant who recommended that my husband had ECT. 

I was given literature to read up about it. I also looked on the internet at things, so I sort of really thought I needed to go into it in depth. 
 

Kathleen, a GP, had worked in an ECT suit and knew it was safe. She said she knew enough not to be afraid of it.

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Kathleen, a GP, had worked in an ECT suit and knew it was safe. She said she knew enough not to be afraid of it.

Age at interview: 51
Sex: Female
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I don’t remember feeling, that I didn’t want ECT that or being very anti or anything, because I knew about it. I knew about ECT and I knew it was safe. I’d actually given ECT during a six month job as an SHO in psychiatry. And in those days, with no training whatsoever we actually gave it to the inpatients that were having it. And, the only training was from the anaesthetist I think, it was really basic, it wouldn’t happen like that now, I don’t think. Yes, I’ve seen some dramatic effects on people improving with it. And I suppose I, don’t know whether I thought I would improve or not, but I certainly wasn’t against the idea at all. I knew enough about it at that time to not fear it particularly. I don’t know what I thought it was going to do to me, but I wasn’t afraid of it. Because I know it can kind of does conjure up fear in some people I think
 

Although Enid had worked as a nurse, she didn’t know much about ECT but thought it was for extreme cases. When she was offered it she was so ill she didn’t care what happened.

Although Enid had worked as a nurse, she didn’t know much about ECT but thought it was for extreme cases. When she was offered it she was so ill she didn’t care what happened.

Age at interview: 74
Sex: Female
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And I was offered ECT then and… I don’t think I even thought about it much, you know, kind of they said it might help and quite honestly at that point I couldn’t care less what they did or what happened and I think probably I was fortunate in that, when I’d done my nursing training, because I became a nurse when my children were growing up I had actually been to an ECT session. So I suppose that, for me, in any case it wasn’t something that was totally new. But as I said, I couldn’t have cared less what they’d done at that point.

And obviously, you know, from your medical background you’ve seen ECT and so on. Can you remember what you thought about ECT before you…?

Well I thought it was probably for extreme cases [laughs]. And that… you know, kind of, it wouldn’t be for most ordinary people you know. I suppose really because I didn’t do psychiatry it was just a little part of the training. You king of go in one day and you see it, but you don’t know anything much about psychiatric problems and diagnoses and so on. So you don’t have a very sensible idea of what it’s used for. You know, you learn very little in one day’s visit really. It’s surprising how little you do learn.
Some people were concerned about how ECT was supposed to work e.g. “not a very exact science” or what actually happened during the treatment such as why people couldn’t walk properly afterwards and why they “jumped around” when they had ECT. Despite his medical training and work as a consultant, Sunil didn’t know much about how ECT worked, but didn’t think anybody really knew how it worked.
 

When she was an inpatient, Sue thought ECT was a Victorian era treatment. She felt there was a lack of information about medical treatments and that most people don’t question their treatments.

When she was an inpatient, Sue thought ECT was a Victorian era treatment. She felt there was a lack of information about medical treatments and that most people don’t question their treatments.

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So what should I know about ECT. I had these ideas of Victorian treatment for those with mental health problems, of frontal lobotomies, of people being held down, because of course they didn’t bring out suitable treatments for a lot of these schizophrenics and sort of bipolar people until the 1950s, and I just felt that it was just the case of, really you were in a prison and this part, this, the ECT was part of that scenario, was part of that old ideas of treatment and things. Why were they bringing it into the modern world?

And I thought how are doctors using something and they don’t know how it works? Would you really do it in any other sort of like, life situation? Wouldn’t you really want to know? And I suppose its individuals that don’t. I’m just very curious. I think that’s why I said, initially before you started sort of recording this, I find it very difficult to understand when people had got a medical problem and they don’t know what, you know, how to describe it, what it really is. They’re just given a name. And you ask them what mediation they’re on and they say I’m on tablets. But they don’t what it is, how it sort of reacts with its contraindications and I just feel generally, not just with ECT today there’s still lack of information. I think there’s such a lack of information. I think there’s the assumption that everyone’s on the internet and they’ll go find this information out for themselves, and a lot of human beings aren’t, you know, in that sort of state of mind or they don’t really want to know. They just want to take the tablets and hope it all goes away.
Many carers, wanted to find out more before the ECT procedure. David Y wanted to know how long the shock lasts, how it travels, how it kick starts the brain, what sort of people it’s used on, how long recovery takes, why people get headaches. He found the small ECT leaflet he got didn’t really tell him anything. Some carers were told in detail what to expect by the health workers, though others only found out about ECT by hearing about it from their loved one after it had happened. 

People who could access the Internet read online information about ECT and found that “quite helpful”, but they also found “horror stories” about ECT. Others visited the hospital and spoke to health workers to get more information, or spoke to people who had had ECT (see for more ‘Getting information about ECT’). Doing research helped some people decide to opt for medication instead.
 

Mandie was prepared to have ECT 9 years ago after doing some research, but visited the hospital and found it scary. Even now when she drives past the hospital she is relieved that she didn’t go there.

Mandie was prepared to have ECT 9 years ago after doing some research, but visited the hospital and found it scary. Even now when she drives past the hospital she is relieved that she didn’t go there.

Age at interview: 39
Sex: Female
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No, I was given no help by the NHS. I really feel that they’re on their own agenda, and you’ve got to fit in their little box. And if you won’t fit in their little box, “Then we can’t help you.” Well, people don’t fit into boxes. You know, we are all, you know, incredibly unique and different. So, no, I got all my research offline. As I say, I was looking at Harvard research papers, and Sweden’s got a very good reputation for a lot of, mental health stuff, as has parts of Australia. So, I was reading up about, round the world, and, you know, how they were using it. And that was what was driving my desire to go forward with it. Not really what they said. No, they weren’t really, they didn’t really explain it, to be perfectly honest.

And then, obviously, it wasn’t so, it wasn’t so much the treatment that put you off as the surroundings…

The environment.

…and the aftercare that was offered?

Very, very scary environment, yes. I mean, I have to drive past the hospital quite often, and I have this sense of relief, you know, nine years later, that I didn’t go in that place. Yes. I just remember going in there, and it just was not inviting, at all. It just instantly was, and the people in there weren’t particularly, I was expect-, I suppose I was expecting someone to be very ‘hold your hand’ kind of attitude, “Come on now. I know you’re in a bad place. Let’s, let’s sit down and talk about your options here, and why we’re considering this option for you, and why we feel it could be the right move forward.” But it wasn’t. It was very, “Well, you know, this is what’s on the table. If you take it, you take it. If you don’t, you don’t. And if you don’t, there’s nothing we can offer you.” “Oh, thanks very much” you know. I, as I said, I’ve said before, I was actually told by, one of the mental health team, that as far as they were concerned. And my father had come to this appointment with me, and it was just before I was going to go for the ECT, because they were desperate for me not to do it too, so I was going against the whole family, I’m part of a close family. And he said to the doctor, “There must be something you can do.” And she said, “You must remember as far as the NHS is concerned, it’s classed, the British NHS is a sinking ship, and even the rats are leaving.” And that’s what they told a mentally ill person. Which is nice [laugh]. “Thanks for that,” [laugh]. “What country do you suggest then?”
 

By the time Suzanne was offered ECT she was not eating or drinking, so the decision about having ECT was an urgent one. John Y found horror stories on the Internet and wasn’t in favour of it, but it did work very quickly.

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By the time Suzanne was offered ECT she was not eating or drinking, so the decision about having ECT was an urgent one. John Y found horror stories on the Internet and wasn’t in favour of it, but it did work very quickly.

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John Y: What actually happened was that I had no legal say in the matter as we were not married. Suzanne’s parents also had no legal rights on their daughter’s treatment as they were Irish and non-UK citizens. Hence the reason for my anxiety at the time. The doctors made the decision. Which I was thinking well, if I didn’t know anything about ECT when I looked at it on the, on the internet I was drawn to all the kind of horror stories and you know, memory loss and changing your personality, and that sort of thing.

Suzanne: Also loss of creativity and all kinds of things.

John Y: Hm. I was thinking you know, that this is a bit out of my hands really and I rang up our parents to say, you know, “I’m not sure, you know, what’s going to happen here” and they were all, “Oh the doctors they know what’s best”. They had 100% confidence in the doctors whereas I was much more questioning, thinking well hang on a minute, they don’t even know how ECT works. It’s still you know, it works for some people and there’s a lot of people where it doesn’t work. The side effects are long lasting, if not lasting the rest of our life it seems to be a bit hit and miss. It doesn’t seem to be based on a sound scientific footing, you know, if they don’t know how it works then. To be honest I wasn’t in favour of it. So I felt in a position where, you know, I was, I basically didn’t have much of a choice in the matter I had to go with it, because there wasn’t any other options really.

Suzanne: Hm.

John Y: And in your case I think it did actually save your life and you know, it did have very positive results very quickly.

Suzanne: Hm.

John Y: So my doubts were dispelled in that case, but I can see why a lot of people you know, quite rightly are anti-ECT and it may not work for everyone. 
Although some people wanted to know information about ECT, others – particularly those who were very unwell “distressed, confused and disoriented” – were less concerned. Because ECT was offered when their illness was at its worst, it often seemed the only answer, or they were so unwell they just accepted it. John Z was withdrawn before he had ECT and so was unable to understand any information about it. Some people, like Tracy, felt that ECT was the logical next step. Although Tracy had had experience of ECT through her medical training and didn’t think it worked, she did have ECT because she says, “I was so desperate”.
 

Although David Z didn’t think ECT would work he decided to “go for it and see”. He wasn’t frightened by it, and it was just one more thing to try.

Although David Z didn’t think ECT would work he decided to “go for it and see”. He wasn’t frightened by it, and it was just one more thing to try.

Age at interview: 44
Sex: Male
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I mean I was offered ECT in my first consultation as an inpatient and at that point a lot of what they were saying to me was very, it was very new. They were trying to get a handle on the diagnosis for myself and give it some labels. And I knew I wasn’t comfortable with that. So when they offered me ECT in the first week it wasn’t I didn’t care about it, but in a sense I didn’t. You know, it was just one more thing they were offering me and I didn’t feel resistant to it or I didn’t feel frightened about it. I guess it felt a little strange because, you know, “What is this?” But I guess there was also part of me, a small part of me was a bit intrigued. So there was probably a little bit of an interest there to see exactly what this was. So I guess I felt quite, quite okay with it. I wasn’t, wasn’t nervous and I wasn’t fearful of it, you know.

That’s a fascinating word to use that you were intrigued by it. So there was a kind of curiosity?

Yes, because you, you’d heard so much about it on the TV and you’d seen it in documentaries and you’d think, “Oh, actually what is this?” And I guess I didn’t believe it would work, to be honest, because nothing else had worked, you know, the psychotherapy, the antidepressant tablets. ECT, it was just like one more thing in a long list of things and, no, I didn’t really think it would work, to be honest.
You can read more about decision-making on this page: ‘Deciding whether to have ECT

Last reviewed January 2018.
 
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