Experience of having ECT

In preparation for the ECT people are tested to make sure they are fit for treatment, e.g. a chest X-ray, an ECG (to trace the heart) and blood tests. People are asked not to eat or drink for at least six hours before the treatment. On the day of the ECT they come to the ECT suite and are given further routine checks such as blood pressure and glucose tests. The ECT team who carry out the treatment consists of specialist nurses, an anaesthetist and a psychiatrist. An anaesthetist puts a cannula into a vein, usually in the hand, and sticky pads are attached to the patient to monitor their brain waves. Drugs are given by the anaesthetist to induce a sleep like state and to relax the muscles. This reduces muscle twitching during ECT. Once the patient is relaxed a guard is placed between the teeth so that the person receiving the treatment doesn’t bite their tongue or damage their teeth.

A short electric current is then passed across the head so that the person has a short epileptic fit. The strength of the electric current used varies depending on the patient. The fit normally lasts between ten seconds and ninety seconds. The medical team constantly monitors the person’s blood pressure and heart rate and gives them oxygen during the treatment. Afterwards, the person is given time to wake up in a recovery room where they are also monitored. Patients are usually able to sit up and have a drink twenty minutes after the procedure.

People we spoke to had had one or more courses of ECT treatments. Each course consisted of usually 6-12 treatments with up to 3 treatments given each week. Some had ‘maintenance’ treatments less frequently, for example once a month. ECT was described by some as very ordinary ‘Like having a cataract operation’, though others found it very alien ‘slightly barbaric’.

Alka explains the process of her husband’s ECT treatment.

Age at interview 50

Gender Female

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You have to, because you receive an anaesthetic, you have to be nil by mouth, so after about 7.00 p.m. you’re not allowed to eat or drink anything at all. The centres for ECT have been reduced to nationally now, I gather theres one in [city name] and one in [city name], and fortunately we live in [city name]. But on the morning or the day of the ECT as an outpatient which is what [husband’s name] was, I would drive him to the ECT suite where he would have an assessment by a nurse so hed have his blood pressure taken and they’d take him through a series of questions, particularly to check that he hadn’t had anything to eat or drink since the previous evening. They weigh him and in doing so because you go for a course of treatment the nurse actually gets to know the patient as well but I’ll come back to that in a moment.

And then the patient is given an anaesthetic, it’s a short acting anaesthetic and once that anaesthetic has been administered the patient is given electric shock treatment as was known but through electrodes which are attached to the temples. I think they put some sort of gel on the temples and then they put the electrodes and a judgement is made by the consultant, who’s in attendance as to the level of the is it electricity? The current that’s going to be given. And because they’d got to know [husband’s name] has well as they did they kind of upped his dose a little bit because they knew that he didn’t respond so well to a lesser dose of ECT. Once the ECT has been administered, they’re taken into a recovery room where they’re monitored, the heart is monitored to make sure that obviously they recover fully and well.

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Tania said having someone with her before the treatment, being in nice surroundings, and having the staff introduce themselves really helps make ECT a less frightening procedure.

Age at interview 41

Gender Female

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What other sort of aspects of that bit helped it be a better experience?

Well I mean I think you know, a lot of it is down, so much of it is down to the people. So much of it is down to the people, but also things like, you know, having, I, you know, my husband hes, I mean not so much when I’ve been an inpatient but certainly with any of the outpatient treatments, he comes with me and hes like there, I mean it really helps to have and when he hasn’t been able to come, my Dad has come, or sometimes you know, my sister-in-law has come with me or even a friend, just to have someone, you know, to have someone kind of there and they sit with you in the waiting room and stuff and you kind of you know, you chat and they, they usually have, I mean they’ve been refurbishing the block actually, so weve kind of been doing it almost in a trolley in the middle of the corridor but you know, I’m kind of used to it, so it didn’t really bother me, but generally they try and, they’ve been doing it the new ECT block. They try and have nice surroundings, which actually it does, it does help, because, you know, as I say I’m kind of an old hand at it, so I don’t really feel nervous before hand, but it is nice to kind of come into a nice room, and it’s just, I think the most important thing is that you know, they, they make it really clear what’s going to happen, they explain every step of the way, they always, when you go in, everybody introduces themselves, and says, You know, I’m so and so, this is what I’m going to be doing.

So you don’t look round the room and think why is that person standing there, you know, they ask any questions, any worries, you know, any have you had all the checks? And everything’s very, you know, it’s all, it’s all very relaxed and I mean the anaesthetist is lovely, and they always sort of say, oh you know, Think about something nice and it’s going to kind of And it’s just sort of those, it’s just being really sort of human about it, explaining the whole process, you know, and especially if its someones kind of first time, or they’re not used to it, but the fact that they kind of, they’ll go out of their way to almost to over explain and say, Are you sure, you know, are there any questions? And you know, this is what I’m doing, and this is what I’m doing. And I think, but I think all of those things help it make it, help make it a much less, you know, frightening procedure. You know, and when you come round, it’s very nice, you know, when you come round someone always brings you a cup of tea and because you haven’t eaten therell be a biscuit sort of, and they you know, those sort of touches, actually make a difference.

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The passage of time and the side effect of ECT itself can make it harder to remember the treatment, which for many was a long time ago. Tracy struggled to remember the ECT treatment she had had almost twenty years ago. She also has severe memory loss from around the time of the ECT and before. Tania found that her memory is good generally. However, there are ‘gaps’ in her memory of the months she was receiving regular treatments (see ‘Side effects of having ECT‘ for more). Suzanne only remembers her last treatment. The doctor said to her ‘you know what to do now Suzanne’, but she said ‘every previous thing had been kind of wiped by the ECT.’ Going in for her last treatment felt as if it were her very first.

But some did remember the treatment clearly.

Although Sunil found memory loss the most distressing effect of ECT, he can remember quite a lot of the details of the ECT treatment. Immediately after the ECT, when he was not fully with it’, his wife was there.

Age at interview 56

Gender Male

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And you were saying that you can’t remember a lot of the ECT treatment when you first had it, or even the consent process and so on. Can you remember a bit more about

Of the more recent episode?

Yes.

Only a tiny bit more, because one of the most distressing effects of ECT is the effect on memory. To the extent that you know, there are very, very large gaps in my memory, and sometimes I can’t even remember the names of people whom I’ve known for years, and my wife continually, almost on a daily basis talks to me about something that has happened in the recent which I have no recollection of.

So but I do remember being taken three times a week Monday, Wednesday, Friday by car, first thing in the morning before 8 o’clock across the city to the place where the ECT unit is. And then waiting in the waiting area with the other patients and then being taken through to the room where the ECT is given and being seen by the anaesthetist who gives you an intravenous injection of a short-acting anaesthetic which puts you to sleep and then you have your ECT.

And the next thing you remember is you come round where you are in a room where all the other patients also who have ECT are having something to eat, and some breakfast, because obviously you had to be fasted in order to have the ECT because you’re going to have an anaesthetic, so it’s got to be done on an empty stomach, so you have a, you know, some toast or cereal or something after you come round.

And the first thing you notice when you come round is you’re actually sitting in this room with the other patients and being given some breakfast to eat.

And how do you feel then?

Well at that time you’re sort of a bit dazed and not fully with it. But luckily obviously, my carer is there with me, my wife. And then she brings me back home. And usually when I come back home after I’ve had ECT, I usually was allowed to have a kip, so I’d have a snooze for about an hour or two until I was then woken up.

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John Z remembered step by step the process of having the ECT.

Age at interview 63

Gender Male

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And you basically go down to the ECT suite, having not eaten or drunk in the morning because you’re going to have a light general anesthetic, and the, you just get onto the trolley in your normal clothes, make sure you’ve been to the loo, because they give you a muscle relaxant and in one of the sessions I had they forgot to remind me. But that’s what happens. That’s the worst thing that can happen.

Then the technician from the anesthetics department comes over, was there, and cannulates your arm for the anesthetic, for the light anesthetic, and the, and muscle relaxant. And then the anesthetist turns up and that’s the one that has to put the drugs in. So they just – that wonderful feeling of going off, where you feel as though you’re drunk and the world’s spinning round but you don’t feel sick. You know, if you’ve even been had a few too many drinks and the room goes round this is that lovely feeling without feeling sick. You go off and what they do is they induce a minor epileptic fit with small electric currents in your head, very minor, they’re micro, micro volts, and most of it is done by the houseman, the psychiatrist’s houseman, but under the supervision of the consultant psychiatrist who is there.

And it takes about ten, twenty minutes, and then you find you wake up in the recovery section and they say that during the thing during the process of the epileptic fit, the only thing you notice in the patient is a slight twitching of the toes. They take your shoes off, so a slight twitching, that’s all you notice because in the past, before they used muscle relaxants, people would jump all over the place. That’s why you get that feeling of One flew over the cuckoo’s nest. And you don’t get any of that, and you don’t lose your memory and you wake up and you just wake up and go and have lunch. So you don’t, you’re not, you’re still about what ten minutes recovering, a cup of tea and biscuit and off to lunch. And that’s it.

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The ECT environment and staff

People talked about how important the environment of the ECT suite and the waiting area was. People were often nervous before their treatment, and some had to wait in a room for a long period of time. Tracy remembered nice details like a bunch of flowers in the treatment room. David Z described the environment as ‘alien’ but said he felt ‘calm and safe.’ For Lorraine the waiting room had felt ‘homely’.

Many people talked enthusiastically about how friendly, kind and professional staff in the ECT suit were. This was vital in helping them feel less nervous. Tania said because of all the controversy about ECT, staff who carry out the ECT are usually aware of the need to make people feel at ease.

Jenny was positively overwhelmed by the way in which ECT was performed, and the kindness of the staff, even though she didn’t find ECT effective for her depression.

Age at interview 56

Gender Female

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And I, in terms of just the practicalities of it, I was overwhelmed by kindness. And I grew, I really missed it when it stopped because the two nurses who ran, effectively ran, the ECT department were both in their different ways the warmest and kindest and most lovely nurses you could ever hope to find. Which contrasted with a bit like being in prison atmosphere of the acute inpatient ward. And because those two people were so lovely, it almost became a treat, just thinking, I can get out of this madhouse for a bit. And one of them was called [name] and the other one was called [name], will just be so lovely to me. They’ll say, Hello, Jenny and, Do you want a cup of tea? and, and make a fuss of me. And that wasn’t what was happening in the ward. There was an awful lot of effing and blinding, and rules and regulations, and spitting and horrible things went on in the ward.

I can remember these two ladies giving a very warm welcome and just saying, Well, how have things been? I remember getting ready on to, clothes off and on to a treatment… mobile bed. I guess it must have been a bed. I remember the anaesthetist talking to me and asking how I was. And then I remember waking up with, sometimes I remember waking up there, being offered a cup of tea afterwards. Some of the time I don’t remember that until I actually found myself back in the psychiatric ward and not really quite sure how I’d gotten there or how, how that had happened, as if I’d, you know, had the most terrible, been on a complete bender, that hasn’t happened to me very often, but just where you have these gaps and think, Oh, what on earth, how did I get from there to there? I remember the psychiatrist, who was a lovely and gentle man, consenting me, explaining the procedure before the first time and consenting me for it. And I gave my consent without duress, definitely. And I remembered the conversations, he was called [name] that [name] the very gentle way in which he wanted to reassure you that what you were about to do was completely safe, at least in his opinion, and that the jolts to the brain, the shocks to the brain were minute and nothing to be frightened of.

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Tania was impressed by the kindness and humanity’ of the staff and she felt better after 6 or 7 treatments.

Age at interview 41

Gender Female

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So I said, Okay I’ll give it again. And they were really, you know, they were so good about it. The ECT team at the hospital I went to, they are wonderful and I can’t talk about them in, you know, highly enough, the way that they treated you, the humanity, the way they made you feel relaxed about the treatment. I mean they follow the guidelines, which are now set up ECT, about how to treat people who are going through the treatment in terms of, you know, preparing them, making sure that someones with them to feel comfortable, explaining the process. You know, they did all of that, and when they actually came to do the treatment, it was done with such kindness and humanity and dignity that it really changed my whole perspective of what had happened from the previous hospital which was the very polar opposite. And it was incredibly because all of a sudden after six or seven, the sixth or the seventh treatment, I just, I came to and it was gone. It was just gone. It was like this thing had lifted from my head and I was better. I was just better and I didn’t feel, you know, I could reconnect with the people around me and the world seemed real again and I didn’t want to kill myself anymore and it had all gone. It just went. It was like that, like a switch. Quite incredible.

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However, others found the hospital environment daunting and unfriendly. Catherine Y said that when she was offered ECT, she found the hospital staff ‘difficult’ and the hospital environment ‘quite unsupportive’. Carys said ‘people, generally speaking, didn’t want to talk to me at all’. Sue said the staff didn’t talk to her during the ECT treatment and that was ‘the worst thing’ for her (for more see ‘Relationship with health and social care’.

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

Age at interview 52

Gender Male

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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 were going to take you for your ECT now, just going to give you this injection now, that was it, come out of it and heres a couple of paracetamol, have a lie down and that was the only interaction that she had with that.

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The effect on others of seeing a person come out of an ECT treatment can also be unnerving, e.g. when others come out of the treatment room ‘drooling’, looking ‘zombified’ or ‘crying and screaming’.

It is possible to have ECT as an outpatient. Steve thought his wife made a better recovery when she received ECT as an outpatient on the NHS and could go home in between treatments (for more on this see ‘Staying in hospital’). Those who had ECT as an outpatient were able to make their own way to and from the hospital accompanied by relatives.

The ECT treatment itself

Some people we spoke to had a positive experience of the ECT treatment itself. Jane described it as a ‘still point in a turning world’. David Z said by the time of his last treatment it was ‘just a normal thing to do twice a week’. But others found it ‘overwhelming’ and ‘horrible.” Being nervous (e.g. feeling ‘like a frightened animal’) before having ECT was a common experience. Sheila’s husband felt strange after his ECT treatments, and usually said he wouldn’t have it again, although he did.

Being well informed about the treatment and being prepared to give it a go seemed to make it less frightening for many. John Z, who was catatonic when he had ECT, said he was told in detail what was going to happen and it was ‘not at all frightening’. David Z had suffered depression since he was a teenager, and when he was offered ECT at age 40 he volunteered for it. He said he was given quite good information and he thought, ‘Okay, this is just the next step and let’s just go for it and see’. He wasn’t frightened or resistant, even though it all felt a bit strange. Many of those who had ECT were so ill they said there was no alternative option (see for more ‘Compulsory detention or treatment‘, ‘Deciding whether to have ECT‘).

It was those who had ECT a long time ago who had the worst memories.

Helen had ECT in 1970 when she was 17 and describes it as a horrific memory. She can remember herself and others being herded into ambulances and taken to another hospital where they were given the treatment.

Age at interview 60

Gender Female

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But during that time we were herded into a reception area and we were herded into ambulances that bussed us from the ward we were in to another really big Victorian block and then the ambulances dropped us off and we went into this huge ward and there were red blankets on the bed and they were systematically laying us out in the beds as we went in and we were then given an aesthetic and then I had electric shock treatment but I didn’t know. And I woke up in the deep sleep in this bed and I didn’t, my mind was just black like you’re in a different universe, I had no name, no nothing. And eventually I managed to bring to mind my name and I hung onto that and fought for that. And I was very lucky because I only had two lots of electric shock treatment but they took me, again herded us into the foyer and into ambulances and drove us to the other ward where they gave us anaesthetics and electric shock treatment. But on that occasion I was fighting for my name, fighting to remember my name and you survived because of those who were already insane because they’d shout out to warn you and there was a woman in the ambulance and she was going ten, nine, eight, seven, six and I knew that I had to fight the anaesthetic to stay conscious and I believe that what I owe my sanity to now and so I stayed conscious down to three and down to two which might I got the maximum pain and I’ve suffered from the maximum pain since but I came out and in the end I recalled my name again. And then I was put onto the day ward.

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Yvonne was 18 when she had compulsory ECT and didn’t know what was going to happen. She kept running away from the hospital. In the end, she was kept in a locked room and wheeled down to the treatment room. She said she ‘just couldn’t figure out why putting an electric shock through my brain was going to make me feel better.’ She was ‘absolutely petrified’. Carys’s daughter was 19 when she was sectioned. She repeatedly ran away and ‘loathed it with a passion’. Tracy says when she had ECT in her twenties she was ‘a bit blas‚àö¬©’ about having the treatment but she remembers going down to the room and ‘it was all very sombre and a bit scary’.

Quite a few people talked about having to travel to a different hospital to have their ECT treatment because their local hospital didn’t have the equipment.

Cathy had ECT over ten years ago. She was taken with others in a taxi for treatment at another hospital and was too scared to have further treatments. She struggled to remember recent events.

Age at interview 49

Gender Female

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Can you describe to me the, the process and, and what you felt like?

Like I said, wed trundle over to this other hospital in a taxi, having obviously had no lunch because it was always in the afternoon, and sit around and wait for each person to have their treatment. And then they’d get you to lie on this, well, sort of operating trolley thing. And this is the bit that I a-, actually got to the stage where I couldn’t have any more treatments because I got so scared, but they administer the anaesthetic and then do whatever they do and then you come round and you can’t remember anything [laugh] for a little while. You’ve got a bit of a headache, yes, yes, I can remember having a headache. And then I think when we actually got back to the ward they sort of told you to go and lie down for a while and

And how were you sort of feeling for the rest of the day then?

A bit sort of zonked out. And it, like I said earlier, it definitely does affect your short-term memory. You know, I’d struggle to remember what had happened, you know, that day or the day before. So that’s a bit scary.

Was it just sort of events that you struggled to remember or was it sort of names for things?

No, not names for things. I could remember that sort of thing. But it, more events, things that had happened in the last few days.

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Sue and Ian’s local centre had closed and Sue had to travel to two other places and never knew which one she had to go to. Rather than a short course of treatment the ECT was spread over months.

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You know, people would take her there and bring her back. So we agreed to that. So everything was set up, you know, and I think the first couple of sessions went okay. And then we came up to the sort of National Health haven’t got enough resource tag. So what was happening was ECT then sort of would be left for two or three weeks, and then thered be another session, and there would be two or three weeks, after the course of twelve was it, you know, it was spread over months.

Whereas it should have been short and concise.

And the other thing as well is the local sort of centre where they deliver ECT, was actually in [name of place] and they’d closed it down at the hospital. So there were two other places which was [name of town] and [name of place] and I never knew where I was going to go. And I would be informed to go to [name of place] or wed go to [name of place], so I didn’t know the staff there, you were sort of waiting in the waiting area, and then obviously taken in, as a sort of I’m okay with medical procedures aren’t I?

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Some people talked about the health professionals changing the amount of electricity used for the treatment. Kathleen said that after her first ECT she had a bad headache and sore jaw and she couldn’t eat. She said her ‘seizure threshold’ – the amount of electricity needed to give her a fit – was low and so they adjusted it for future treatments and she was fine after that.

After the anaesthetic some people felt ‘quite knocked out’, ‘groggy’, ‘confused’ or ‘tired.’ Tania remembered ‘the anaesthetist [was] lovely’ and told her to ‘think about something nice’ as she went off. John Z described how the anaesthetic gave him ‘that wonderful feeling of going off’. But Cathy said she stopped having ECT because she ‘couldn’t stand that point between being awake and the millisecond bit’ before going unconscious. Sue felt she didn’t have much choice in it, and said the anaesthetic ‘was sort of like an emotional way of holding me down. And of controlling me.’ She had needed a lot of anaesthetic for her to go under. She felt quite distressed when people seemed to panic: the anaesthetic was slow to take hold, and she worried it might not work.

Some people commented on the way they or their loved ones had looked straight after having ECT. Yvonne felt she had looked like she’d had a stroke, and Lorraine and Annie said their mum’s face had gone red and her hair was sticking up. But this effect on appearance soon wore off. Jane spoke about how she had had ECT in the morning, and competed in a mother’s race at her child’s sports day in the afternoon, even though she fell over at the end of the race (see ‘Side effects of having ECT‘ for a discussion of unwanted effects of ECT).

Side effects of having ECT

ECT can have side effects. Most people we spoke to had some side effects from the treatment. Side effects ranged from the pleasant "being woozy...