We asked people we spoke to if they had any messages they wanted to give to people considering or going through ECT.
Some people wanted to give “positive” messages about ECT. They said:
• it is effective and has quick results e.g. “you get instant relief”
• “it works”, “huge success rates”
• gives hope when all other interventions have failed
• few side effects other than headache and memory loss
• consider that the side effects of ECT might be less severe than for the medications you are currently taking
Others wanted to emphasise the need to be cautious when deciding to have ECT. They said:
• we don’t really know how it works
• memory loss can be a problem, including long held memories, regardless of what the health professionals say
• consider that there might be other options that are better suited to you
• you can still suffer side effects even if ECT does not work
Although ECT wasn’t effective for Jenny, she found the treatment was done professionally and with rigour. She suggests people talk carefully to health professionals about its suitability for them.
Although ECT wasn’t effective for Jenny, she found the treatment was done professionally and with rigour. She suggests people talk carefully to health professionals about its suitability for them.
Age at interview: 56
Sex: Female
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I think I would want people not to be scared of the process itself. That it will be done, if my experience is anything to go down, I’m sure it is pretty well typical, it will be done thoughtfully, professionally and with care. So I think that there are, there are good followed standards for its administration. And that because it is seen as un-, invasive in a discipline where invasive things don’t happen anymore, that people approach it with quite a lot of rigour and careful thought. I would want to reassure people that it’s, if my experience is anything to go by with a relatively short number of treatments, that it has had no long-term effects on memory and concentration and intellect as far as I can tell, and I think that’s probably very unlikely to happen. I think it’s more likely to happen for people who have recurrent but separated courses rather than long courses, but recurrent courses of ECT. And that I would want to, to be, people to seek very careful recommendation before they went on to have more for example than 20 treatments, which I would think would be a large number. But I don’t know enough about the technicalities to know that, but I think that would be a lot. I would want to say that you need to talk very carefully to the doctors and nurses looking after you to be sure that this is something they, for your particular illness, believe has a very good chance of making a difference, making you better and safer and happier.
Tania thinks that ECT has huge success rates and shouldn’t be written off because of the bad press. Although it was used in the wrong way in the past, she wouldn’t be alive today without ECT.
Tania thinks that ECT has huge success rates and shouldn’t be written off because of the bad press. Although it was used in the wrong way in the past, she wouldn’t be alive today without ECT.
Age at interview: 41
Sex: Female
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The success rates are a huge, and I would say, you know, even if you think it might be something you’ve considered, talk to people, ask about it, don’t write it off, don’t think you know, I’m not going to do this, because I heard something really bad about it. There’s a massive amount of negative press out there about ECT and it was used badly in the past. It was used in the wrong circumstances and in the wrong way, on people that it shouldn’t have been used on, but if it’s used in the correct way, under the correct circumstances, on people who have the type of condition that it could help, it can be incredible and it has for me, and I mean I definitely, I can say with my hand on my heart, I wouldn’t, I mean because there’s only so many suicide attempts you can make before one actually, mine were getting closer and closer and you know, like I can say with my hand on my heart, I mean its 99% I wouldn’t be here today, I certainly wouldn’t be here today giving this interview. I wouldn’t be here today full stop you know, and my family’s life would be destroyed if it wasn’t, if it wasn’t for ECT. Yeah.
Some of the people we spoke to said ECT is nothing to be scared of, and it does produce results. A few people even said ECT was a pleasant experience, e.g. “I looked forward to the ECT… I was just happy that it worked.” Some people like Annie and Lorraine wanted to let others know it could be an effective treatment. Sunil said “ECT is life saving for someone who is suicidal”.
Yvonne thinks that ECT should be considered as a last resort when people are very ill. Although she found the experience of having ECT horrendous, it probably saved her life, so it might be worth trying.
Yvonne thinks that ECT should be considered as a last resort when people are very ill. Although she found the experience of having ECT horrendous, it probably saved her life, so it might be worth trying.
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I would say, you know, for people who are very, very poorly, who are very, very ill, as a last resort It’s worth, it’s worth doing. I do think it should be left as the last resort. And it is horrendous to go through. But I do think that if I hadn’t gone through ECT I don’t think I would be alive today, because I think that I would have gone on to commit suicide. Most definitely. I don’t really know what else to say.
I think it’s a good option if you’ve tried everything else. But it’s horrendous so use it as a last resort, but it does work. It definitely worked for me. I wouldn’t want it to replace other things, other therapies or medications or things, I wouldn’t want it to be a first option. But if you’ve been through everything like what I was, It’s definitely worth considering. It’s definitely worth going, as horrendous as it is, it’s definitely worth going through it.
Although ECT wasn’t effective for Jenny, she found the treatment was done professionally and with rigour. She suggests people talk carefully to health professionals about its suitability for them.
Although ECT wasn’t effective for Jenny, she found the treatment was done professionally and with rigour. She suggests people talk carefully to health professionals about its suitability for them.
Age at interview: 56
Sex: Female
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I think I would want people not to be scared of the process itself. That it will be done, if my experience is anything to go down, I’m sure it is pretty well typical, it will be done thoughtfully, professionally and with care. So I think that there are, there are good followed standards for its administration. And that because it is seen as un-, invasive in a discipline where invasive things don’t happen anymore, that people approach it with quite a lot of rigour and careful thought. I would want to reassure people that it’s, if my experience is anything to go by with a relatively short number of treatments, that it has had no long-term effects on memory and concentration and intellect as far as I can tell, and I think that’s probably very unlikely to happen. I think it’s more likely to happen for people who have recurrent but separated courses rather than long courses, but recurrent courses of ECT. And that I would want to, to be, people to seek very careful recommendation before they went on to have more for example than 20 treatments, which I would think would be a large number. But I don’t know enough about the technicalities to know that, but I think that would be a lot. I would want to say that you need to talk very carefully to the doctors and nurses looking after you to be sure that this is something they, for your particular illness, believe has a very good chance of making a difference, making you better and safer and happier.
Tracy says although it works for some people she would never have it again no matter how bad she was. She recommends people avoid ECT.
Tracy says although it works for some people she would never have it again no matter how bad she was. She recommends people avoid ECT.
Age at interview: 49
Sex: Female
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Well perhaps it does work for some people. It must do otherwise they wouldn’t continue to do it. I hope that that’s why they continue to do it. But I would never have it again no matter how bad I was, because the worst thing for me was the memory loss. And I know I’m not the only person that’s suffered with that, that’s quite a normal thing. But I don’t think enough research is done into the after effects either. No. My recommendation is “stay well clear”, and pursue other avenues first. But like me they are desperate, you try anything. Don’t.
Tania thinks that ECT has huge success rates and shouldn’t be written off because of the bad press. Although it was used in the wrong way in the past, she wouldn’t be alive today without ECT.
Tania thinks that ECT has huge success rates and shouldn’t be written off because of the bad press. Although it was used in the wrong way in the past, she wouldn’t be alive today without ECT.
Age at interview: 41
Sex: Female
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The success rates are a huge, and I would say, you know, even if you think it might be something you’ve considered, talk to people, ask about it, don’t write it off, don’t think you know, I’m not going to do this, because I heard something really bad about it. There’s a massive amount of negative press out there about ECT and it was used badly in the past. It was used in the wrong circumstances and in the wrong way, on people that it shouldn’t have been used on, but if it’s used in the correct way, under the correct circumstances, on people who have the type of condition that it could help, it can be incredible and it has for me, and I mean I definitely, I can say with my hand on my heart, I wouldn’t, I mean because there’s only so many suicide attempts you can make before one actually, mine were getting closer and closer and you know, like I can say with my hand on my heart, I mean its 99% I wouldn’t be here today, I certainly wouldn’t be here today giving this interview. I wouldn’t be here today full stop you know, and my family’s life would be destroyed if it wasn’t, if it wasn’t for ECT. Yeah.
Gathering information
Whatever people felt about the effectiveness of ECT, they described how important it was to get information about what the treatment would involve, what the possible side effects were, and what other people’s experiences had been. The internet was said to be a good place to start to find out information and to get stories of others who had been through ECT (see for more ‘
Getting information about ECT’).
Steve suggested being involved with user meetings and getting more information directly from the psychiatrist or a local patient group. He had been to his local MIND group where he met people who had been through ECT, which meant he and his wife knew what to expect. Albert said it was important for people having or who had had ECT to get together and to share their experiences with medical professionals.
Lorraine and Annie suggested anyone considering ECT should find out as much as they can, and talk to anyone who has had the same experience, and ask what treatment they had, how they felt it had helped. It may help to ask to be shown around the ECT treatment room first if that is comforting. Finding out about expected side effects may help some people too. While carers are more valued these days, they may still need to be assertive.
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.
Age at interview: 52
Sex: Male
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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.
As a carer Carys said you know the person you care for better than anyone so don’t be afraid to create a fuss if needed. Everybody’s illness follows a different pattern and there is a lot of support out there.
As a carer Carys said you know the person you care for better than anyone so don’t be afraid to create a fuss if needed. Everybody’s illness follows a different pattern and there is a lot of support out there.
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I think it’s much easier now, because carers are certainly recognised enormously. And I would say to all carers, don’t just accept the what is going to be done to your cared for is right. Question everything. Ask why. Ask how many times, as what’s going on. Ask what the next steps are. Ask what they’re hoping to achieve. Ask what the medication’s for. What are the side effects? Get as much information as you can about every single aspect of your cared for’s treatment. Ask what long term plans they’ve got. How things are going to be resolved? Even what brought it on in the first place, but don’t just assume that they know what they’re doing, because the person you care for, you know better than anybody in the entire world, what they’re like, and no two persons illness is the same. So you cannot say, oh this one’s got a diagnosis of I don’t know schizophrenia, bipolar, what have you. Therefore they will need exactly the same treatment as the woman next door or the man down the road. They won’t. Illnesses follow such a different pattern all the while. And, and don’t be frightened of make a nuisance of yourself, because you only get one crack at it, and don’t be frightened of people thinking, you know, you’re a pain in the neck or anything. And there is a lot of support there. There’s a lot of advocacy, get advocates involved. Get anybody you can think of involved. Get your vicar involved if you need to! If you need answers and you’re not getting them, bang away until you do get them. And go higher and higher and higher and there is now fortunately, because of the internet, you, you’ve got access to chief executives, you’ve got access to locality directors, you’ve got access to everybody that is going to make a difference. And all their e-mail addresses are out there. And generally speaking, if you go fairly high up in these organisations, they don’t want to look as though they’re not doing the job properly, so the higher up you go, the more information you will be given. And I always remember my sister saying, oh she used to be a school teacher. The parents that made a fuss about her daughter sharing a book, her daughter never shared book. So being a pain in the neck works.
Some people pointed out that it was important to pay attention to the doctor’s own assessment and recommendation about ECT and about what medications are suitable.
Tristan said health professionals are influenced by a patient’s opinion. He warned against swaying doctors’ medication decisions too much: medication, given time to work, can have a more long lasting effect than ECT.
Tristan said health professionals are influenced by a patient’s opinion. He warned against swaying doctors’ medication decisions too much: medication, given time to work, can have a more long lasting effect than ECT.
Age at interview: 38
Sex: Male
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I think, I suppose one thing referring to something I said earlier was, is perhaps, it’s very easy to say, but perhaps not to try and influence health professionals too much about how, what medication they’re going to prescribe. I think they’re probably best left to their own devices, give them obviously the information they need to make the decisions but not to try and sway then to change medication regimes, more regularly than they need to be changed because they do take a long time to imbed and to start working. And although health professionals are obviously aware of that and will tell you that they did seem to me to be relatively ready to do what you asked them to do or in this case what [name of wife] asked them to do. And yes I think it’s better if you can resist changing medication more than you have to. I think my message regarding ECT would be that I definitely can see it’s place and it was a hugely positive thing for us at the time but that I do still have a lot of reservations about it and my personal opinion which isn’t necessarily a very scientific one is that if it can be avoided I think that pharmaceutical remedies, when they work, can be more long lasting. Yes and less prone to relapse, that’s my personal experience.
Kathleen found ECT effective and says if a doctor is recommending it they must have a good reason. She would have it again.
Kathleen found ECT effective and says if a doctor is recommending it they must have a good reason. She would have it again.
Age at interview: 51
Sex: Female
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Oh gosh. Well I would say if your doctor’s considering ECT and they are recommending it for you, then you know, they must have a good reason for it, and it is in the right circumstances a very effective treatment, a fast effective treatment. It works faster than medication I believe, and it’s very safe. It may be a bit scary, but they’ll tell you all about it. I think I on the whole had a good experience of it and positive experience of it. So yes, if they are recommending it, then go for it [laughs]. I would do it again, if I got really depressed again, if I was dangerous depressed again, I would do it again.
Messages to Health professionals
At the time when ECT was suggested to people as a treatment option, they were often very unwell and distressed. People spoke about how difficult it could be to take in information or make treatment decisions when they were feeling severely depressed. However Jane said that health professionals should continue to try to explain ECT to inpatients even if this was difficult. People stressed the importance of health professionals being understanding and giving them as much information as possible including talking about any side effects that they might experience. Some people said it was important for health professionals to:
• provide reassurance, make ECT less frightening
• give people time to consider their decision
• give information that people can easily relate to, such as personal stories
• show patients the treatment room if at all possible and you feel they would benefit
• include carers as much as possible, they are a valuable resource and can feel frightened and may feel ignored otherwise
People do feel less frightened if staff are welcoming, friendly and make what is about to happen seem normal. Equally, people do recall dehumanising experiences with dread and may find it traumatising.
Catherine Y thought staff should be empathetic and be available to patients so they can ask follow up questions about their treatment: Patients should be able to weigh up the pros and cons for themselves.
Catherine Y thought staff should be empathetic and be available to patients so they can ask follow up questions about their treatment: Patients should be able to weigh up the pros and cons for themselves.
Age at interview: 41
Sex: Female
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I think it’s really, really, really important to, one, be empathetic in the way you deliver, how you explain about something like ECT, but give it, give all, every single bit of information about ECT. It’s the only way somebody can decide whether it could be for them or not. And I think you have to give them the pros and the cons. And I personally think it’s quite useful to have some examples of, anonymously, of people’s experiences, because then they’re actually, the patient, if, if, depending on the, what level they’re at, because if you’ve got a completely incapacitated patient who’s not sleeping or drinking you’re not going to be able to, it’s going to be difficult to talk to them as a professional anyway, but if your patient has capacity to understand, to give the medical explanation of ECT and some patient examples. And then I think the person can then weigh up the pros and cons for themselves within the context of their situation. And explain kind of how many sessions, give times and dates of how often they might be, where they’ll be having them, can family be involved on the day that the treatments, you know, they’re going for their treatment? All different kind of options. And answer all that. Being available to answer questions after that meeting, because the patient will also be sitting thinking, “Oh wait, I’ve got something else to ask.” How available are you to be around for that person over the next maybe week or two it takes to, for them to make a decision?
Tania says, one thing that can make a frightening experience less frightening is if you are spoken to as a human being. For her this means seeing the patient as a regular person who is having strange experiences.
Tania says, one thing that can make a frightening experience less frightening is if you are spoken to as a human being. For her this means seeing the patient as a regular person who is having strange experiences.
Age at interview: 41
Sex: Female
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I suppose, just to be aware that no matter how many time’s you’re doing ECT, the people who come to it, may come to it with really strong pre-conceptions about you know, what it involves, or what it’s going to do, and they may well be, even if they’re not saying it, they may well be nervous about what’s going to happen and so I think anything that you can do to, to reassure people and just to talk, you know, the same as you would do trying to make anyone relaxed in any situation, to try and kind of talk to them, and just treat them as a person. I think, you know, part of it is that you feel, [sighs] you know the negative experience you have with psychiatry is when you feel that you’re kind of just being sort of controlled within a system, and the biggest difference to me that, there’s not a lot that someone can do for you when you’re that ill, but one thing that can make even a really frightening experience a less frightening experience is just talking to someone as if they’re, you know, actually as if they are a human being, as if they’re a person.
I mean you know, not treating them as if they’re stupid and they’re not going to understand what’s going on, and equally, you know, not treating them as if they’re, you know, just to treat them as if they’re a regular person and even if the experiences which they’re having might be really strange experiences, just, they’re just a person whose having those strange experiences rather than them, you know, being defined by what’s going on in their head. And anything like that that you bring across to someone who’s going in for ECT or otherwise, you know, is a valuable, a valuable thing.
The timing of giving information about ECT is also thought to be important:
ECT is explained to people when they are at their worst and Cathy thinks this is not the best time. She thinks people with a history of depression should talk about ECT when things aren’t so bleak.
ECT is explained to people when they are at their worst and Cathy thinks this is not the best time. She thinks people with a history of depression should talk about ECT when things aren’t so bleak.
Age at interview: 49
Sex: Female
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But I think, like I said before, when they, the, at the time when they’re explaining it all to you and you’re going through it, you’re in such a terrible place anyway that it’s not the best time to be having it all explained to you. So I’m not really sure how to get round that, to be honest, because, you know, you don’t really want to be having a conversation about ECT when you’re feeling wonderful. But perhaps you should, you know, if you have a history of depression. And maybe it’s something you should think about when things aren’t so bleak.
Hearing other people’s stories was very helpful for many. Jenny said the only information that really ultimately helps is stories of ordinary people. Tristan said he would have liked more information about how people tend to recover, and the patterns of recovery. Some felt that more research needed to be done in general about ECT, how it works and its effects. Sue suggested there should be follow-up and someone should keep records of people’s experiences of after effects, responses to ECT, attitudes and feelings.
Some found joining user groups was a useful way to give back, provide feedback and change practices. Beattie got involved with a local user group and sits on committees and interview panels for Approved Mental Health Professionals. She feels this way she is able to help improve services and can review health professionals.
Last reviewed January 2018.
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