PARTICIPANTS

The study targeted people who had had negative reactions to ECT. They were recruited by posters and flyers asking, "Have you been given ECT? Did you find it upsetting or distressing in any way?" which were distributed through local mental health voluntary organisations. Twenty-two people contacted the researcher, and twenty were eventually found to fit the criteria. There were twelve women and eight men, with an age range of 27 to 63. One of the men was a female-to-male transgender. Ten were unemployed, and ten were involved in voluntary or paid work. Two described themselves as mixed race and the rest described themselves as white.

Participants were not always able to be precise about the details of their treatment, but nine of them reported that they had had more than one course of ECT, and six had had at least one course under section. The most recent course of ECT was 2-5 years ago for five participants; 5 to 10 years ago for five participants; 10 to 20 years ago for 6 participants; and 20 to 30 years ago for four participants.

It can be seen that within the overall category of adverse reactions to ECT, participants represented a wide range of backgrounds and treatment circumstances.

METHOD

The aims of the investigation were explained to the participants, and confidentiality was assured. The researcher emphasised that she had no current connections with psychiatric teams. Participants were invited to take part in a semi-structured interview at a place and time convenient to them, concerning all aspects of their experiences of ECT. Interviews were tape-recorded and transcribed, and a thematic analysis was performed on the results.

RESULTS

Themes can be organised under the following main questions:

What were the circumstances in which you came to have ECT?

Participants described their mental states at the time mainly in standard psychiatric terms, for example:

"I'm diagnosed as manic-depressive, and in those years I did suffer from some form of depression rather than mania, and I suppose I went into such deep depression that they thought ECT would help to get me out of it."

"I was just really depressed and I was getting a bit manic as well, and I didn't seem to be responding to the medication, and they said I should have a course of ECT."

However, as the interviews progressed, more complex background situations emerged:

"I always knew I had problems that were emotionally-based, to do with my life. And although I'd gone in partly under the influence of drugs, LSD, I also knew when I was growing up that I had some problems."

"I was a very mixed -up and distressed person, and then my closest friend was killed six weeks after I got married....and my world fell apart."

"I was in nursing...One day I was a student, the next day I was qualified and in charge of a ward, which I wasn't trained to do.... I was just too young for the job."

"If I look back on what caused the depression and what caused me to try to take my life, it was quite normal, average things...a divorce, I had two children, I was three months pregnant when I left...holding three jobs down, mundane jobs, trying to keep it going really. I was worn out, absolutely worn out."

What kind of explanation of ECT were you given?

A problem here, as with other questions that asked for specific details about events, was that many participants had uncertain recall due to the effects of ECT itself: As in other surveys, nearly everyone felt that explanations had been completely inadequate or lacking altogether, and that there had been minimal opportunity for discussion.

"I don't remember anything being explained. I think they just said they were going to attach these things. I don't remember any discussion beforehand."

"She said, 'I don't think the Valium's doing you any good, so I'll put you on ECT.'"

Why did you agree to have ECT?

Six of the participants had had ECT under section on at least one occasion. The answer to the puzzling question raised by other researchers, of why the others consented despite inadequate explanations and the fact that many of them already had doubts based on the experiences of relatives or other patients, lies in their feelings of extreme desperation and powerlessness.

"I was so ill, I felt so desperate, I didn't know which way to turn. I was just looking for answers as to why I was so strange, so peculiar."

"I wasn't in a fit state to make any of those decisions. We were just grasping at straws, trying to find an answer."

"If you're at your wits' end and they've drugged you up to the eyes you don't question....you're not thinking straight anyway."

This desperate desire to get better was often coupled with a tendency towards compliance and a strong assumption that "doctor knows best". Moreover, participants felt they could not risk alienating these powerful people who seemed to hold the key to their cure:

"I was a very compliant young woman, I was very frightened of everybody and that was part of the problem....I wouldn't have known how to object, it wasn't on the horizon. You didn't disagree with doctors, you did what they said."

"You believed that whatever they were going to do was going to work, you believed what you were told really."

"He is the one with the power, he is the one ultimately that has the answer...if that's the only help you're getting you've got to hang on to it."

A man who ended up completing his course of ECT despite his own reluctance and encouragement from the nursing staff to refuse it, put it like this:

"It was like, the consultants and the psychiatrists have such a powerful influence over you. In one sense your life is in their hands and it's wanting to please them, I suppose, because...part of depression is losing your sense of self really, and you're so easily influenced and so easily willing to accept authority."

One woman found that her refusal to have further courses of ECT was, in fact, respected. Others who were able to be assertive were not so fortunate:

"They asked me if I would agree to it, but they did say if I refused they'd go ahead with it anyway...being forced to stay there is bad enough but being forced to have something that you don't want is ten times worse, so I did agree, yes."

"Now what so often happens in psychiatric hospitals is, it's not the psychiatrist that forces you to have it. Long before that happens you get confronted by staff nurses who are very anxious to stop hassle...so what they do, they see that you're weak and vulnerable and they say, 'You'd better sign', just like that."

"I said immediately that I didn't want it, and I pointed out that the previous consultant....had said to me that she didn't think I was an appropriate case for ECT.....and he (the consultant) got into a real huff basically and got up and walked out of the room...I felt absolutely devastated. I just burst out crying and didn't know what was going to happen to me, or whether they were going to section me, or what."

In summary, nearly all participants wanted to emphasise how far their apparent agreement was from being fully informed consent:

"I wasn't physically taken to the suite or anything, I walked there on my own, but I felt it was forced on me."

What was the actual experience of ECT like?

Six people said that ECT was not particularly frightening to receive, al-though one woman attributed this to the numbing effects of her medication. All the other participants reported a very high level of fear, with a lack of accurate information sometimes supplemented by observation of other patients who had had ECT and by their own imaginations:

"I really didn't know what to expect, so I was absolutely terrified....I imagined great big metal things being put each side of my head and, like, sparks coming out, thunder and lightning, and my whole body shaking."

"When you'd been on the ward there were certain people who had had ECT and all the other people were very scared by this....you would see them afterwards when they couldn't remember who they were and were very confused and had terrible headaches and weren't themselves at all."

All this generally produced a high level of anticipatory anxiety:

"I remember the very first time I had it, walking down to the ECT (suite) from the ward and I remember feeling very agitated, sick and scared. And when I got into the waiting room there, I came to a standstill. I couldn't go through with it, I didn't want it. They talked to me and said I'd signed the consent form and I was under section."

"As they wheeled you in you'd see what they used, they'd put some gel on it, they didn't even hide it from you.... You were scared, yes."

"I can remember sitting in the room waiting for treatment and looking at some of the other people who were there as well and I suppose it was almost like a pre-execution room really....We were all sitting there in complete silence. I remember reading in something, I think a hospital pamphlet, (that) it was just like going to the dentist, which is completely absurd.....It's not like going to the dentist."

One participant reported that the reality was not quite as terrifying: However, the terror of the other participants remained or even increased as the course continued, and many found the immediate after-effects equally devastating:

"I thought maybe second time around it'll be much easier and I won't feel so scared and terrified, but it was just the same, if not a bit more."

"You dread it, your heart starts pumping, here we go again. Horrible, absolutely terrifying....It's like going to your death, your doom, isn't it."

"I was absolutely convinced they were trying to kill me...you know, I was so bad and evil, all they could do was get rid of me." (A woman who was psychotic at the time.)

"They could be doing anything, you don't know what they are doing....you get paranoid and think they are trying to poison you, or do weird experiments or something like that." (A woman with a diagnosis of paranoia.)

"Afterwards I felt as if I'd been battered...I was just incapacitated, body and mind, like a heap of scrunched-up bones."

"....Pains in your head and the memory loss, and sometimes I used to have a bruise. I'd be dribbling, I looked insane....I felt terrible, I was only 22 and I must have looked 82. I just couldn't do anything."

When asked what was the most frightening aspect of receiving ECT, participants most commonly mentioned feelings of being helpless and out of control, and worries about long-term damage.

"It's a horrible sensation. You feel like a zombie, they could do what they want with you when you've had that and you would do it, because you don't know no different."

"It was the whole treatment, being carted off. I felt like a slave, taken away to this little room and put on a bed. No control, it was awful."

"You can't get it out of your head, how would you end up?...you'd be so brain dead you wouldn't know what you were doing."

"What I was most concerned about wasn't the fact that it was unpleasant at the time, it was how it was going to affect me for the rest of my life....I remember feeling very disorientated and feeling that I'd been damaged for life."

For several, ECT was a confirmation that they were truly mad, and had reached the last option:

"It seemed to reflect how ill I was, the fact that he was saying I had to have ECT this time...;this was the last desperate thing that they do."

"It was because this was the last resort ....so what is there left, annihilation or what?"

"I knew I wasn't crazy. I knew what had happened." (After ECT) "I was beginning to think maybe I am mad ....I must be mad to have ECT."

What other emotional or psychological effects has ECT had on you?

Fear is the only psychological reaction to ECT that has been investigated to any extent. However, these participants described a complex range of emotional responses including feelings of humiliation, increased compliance, failure, worthlessness, betrayal, lack of confidence and degradation, and a sense of having been abused and assaulted:

"It made me feel like a cabbage, like I wasn't worth anything at all. All I could do was sit around all day."

"It was like I was a non-person and it didn't matter what anybody did to me."

"I suppose I saw myself as worthless for a long time ....almost being an empty person and having to start again, having to build up a personality, having to build yourself up."

"It's horrible to think that these people, doctors and nursing staff, are going to see you having a fit. It's degrading."

"I knew that the only way I could get out would be by being insignificant ....by being a very good patient, and it worked. I wasn't any better, I felt quite terrible."

"I suppose as a woman, I feel ....a lot of stuff was reinforced. You know, being the gender I am, It feels like you have to comply even more."

"It made me feel like a freak, and it's only since I've talked about that with a therapist about two years ago that I've got over that feeling."

"This psychiatrist had built this relationship with me, so I trusted him and then he did that (prescribed ECT)....This chap had been clued up enough to realise he needed to build my trust, but didn't appear to be clued up enough to know that giving somebody electric shocks to their head might actually damage that trust ....ECT I feel is just such a betrayal, this frightened young woman and they do that. Terrible."

"It's a really horrible feeling ....a sense of failure, and what's wrong with me that I'm not getting better."

"It felt like I had been got at, yes, bashed, abused, as if my brain had been abused. It did feel like an assault."

Most people said that they did not mind others knowing that they had had ECT. For some, though, the perception by them and others that ECT is an intervention reserved for the extremes of madness, produced a strong sense of shame and stigma:

"I was deeply, deeply ashamed of having ECT.....this was real serious stuff, this was a mad person."

"People can't imagine what on earth situation you need to be in, that you need to be electrically shocked. So they imagine that you must have been some kind of absolute raging animal or something to need that."

"I have told a couple of people in the past and they think for you to have ECT you must really be off your rocker."

ECT was experienced by several participants not just as a sign of madness, but also as a punishment for and confirmation of badness.

"At that time I was completely convinced I was being punished for something ....I thought, well, I must have done something wrong to be treated like this."

"Maybe if I had been good or if I hadn't done this or that, I wouldn't be punished. Yes, I thought it's a form of abuse, a punishment."

Three of the women identified themselves as survivors of child sexual abuse. Of these, two drew explicit parallels between these early experiences and the experience of being given ECT, in terms of the emotions experienced at the time, confusingly mixed feelings towards both psychiatrists and original abusers, and inability to deal with their own powerful feelings of helplessness and rage afterwards:

"It certainly felt, 'Do what you like', and that's something I felt as a child, that I had no power, there was no way I could stop anyone doing whatever they wanted to me, so rather than get hurt I'll let them do it and maybe they'll like me .....especially because it was men doing it, the men actually operating the machinery or whatever, and I can remember it was men putting the needle in. Yes, again there would have been no way I would have said I don't want this ....And then just sort of lying there, feeling really frightened and yet completely passive. So it was like all trapped, all my emotions were trapped anyway and my feelings were trapped, so it was all trapped inside. And on the other hand not caring what happened to me."

"I've had physical abuse as a child and I've had sexual abuse as a child and mental abuse as a child. I suppose I did think about it a couple of times going through the ECT, that this was some form of abuse, being put on you when you don't want it, or being more or less said that you've got to have it ....I sometimes feel very angry to the people involved, that I can't get back at them or take revenge at them. So that I don't do that, I self-harm, I cut myself."

(LJ) "Who do you want to get back at?"

"Sometimes it's the doctors, the professionals, sometimes it's the abusers that have abused me .....I always tend to turn it in on myself. I've been told many times by doctors and counsellors, 'You've got to stop turning it on yourself', but I don't .....It's like I feel I need to punish myself, maybe all the abuse is all my fault."

Although this investigation did not specifically seek to investigate the effects of ECT on memory, nearly all participants spontaneously reported some degree of loss. While acknowledging that medication and depression itself can affect the memory, they nevertheless believed that ECT had also been an important factor, and this caused much concern:

"Sometimes it really affects me, I break out in a cold sweat. Have I really got brain damage?"

"It's not the thought disorder that's disturbing me now, it's the damage done by the ECT ....I've probably got another 50 years to go, and I thought, well, I'm going to be damaged for the rest of my life."

Some participants had lost large pieces of their lives, which was particularly upsetting where the memories involved young children:

"My memory is terrible, absolutely terrible. I can't even remember Sarah's first steps, and that's really hurtful ....losing the memory of the kids growing up was awful."

"I can't remember when they started junior school, I can't remember when they left infant school. Now those are things you remember, they're highlights ....and I'm quite resentful really to think that my ex-husband has got more memories of my children and did pretty well nothing to help."

The commonest complaints were inability to follow films, books or TV programmes, and problems with facial recognition. These disabilities were both frustrating and embarrassing. Less tangible was the general loss of sense of self described by a few participants:

"I can be reading a magazine and I get halfway through or nearly to the end and I can't remember what it's about, so I've got to read it all over again. Same with a film or a programme on the telly."

"I can understand the individual sentences but when it comes to taking in the whole story, you don't know what the hell's going on really ....I like reading and I find it very irritating."

"People would come up to me in the street that knew me and would tell me how they knew me and I had no recollection of them at all ....very frightening."

"It happens all the time. It's tiny little things, which on their own don't really matter, but it's this permanent sense of something that you've lost."

"It's a void, I can't describe it, and there's also a feeling of something fundamental that I don't even know what it is missing .....just like an intrinsic part of me that I feel isn't there and it was once .....Part of it feels like there was a real death of something, something died during that time."

Did ECT have any beneficial effects?

Nine people said that ECT had given them at least some temporary relief from depression, or in one case from hearing voices, although all but two of these felt that the costs had far outweighed the benefits. Two other participants reported a paradoxical effect:

"I felt I'd reached the absolute rock bottom and I couldn't go any further. Everything had been tried ....Perhaps I felt the ECT gave me permission to get better."

"In a very bizarre sort of way, because the treatment and the abuse was so terrible, it made me come to my senses. I've got to get my act together, I've got to help myself."

Two of the nine believed that ECT had "worked" by triggering a high mood. A man with a diagnosis of manic-depression described how ECT had several times precipitated a change from suicidal depression to elation:

"I felt fantastic ....Basically it puts you high, so you need the help then, that's when you need the help. Not, 'aren't you doing well, how are you feeling on a scale of one to ten,' 'oh about eight or nine, good I can get a job', 'are you, oh fantastic, go out and do it then.' Because you're sick, still sick."

A woman who also responded dramatically described it like this:

"I felt as though I had become a completely different person ....I felt as if I had just totally gone off my head. I was totally dependent on the ward and everything and all of a sudden I think ECT had blasted me into this other reality. And some positive things did come out of it because I went out and I worked for a year and I was discharged from hospital ....It was at a very high cost, obviously. You feel you've got to adapt to this new person that you are .....For a year or two afterwards I felt very mad ....I felt I'd lost the person I used to be .....Too happy, really, too sort of split off from the side that was there before I had ECT, that all disappeared completely ."

Nine years later, this woman felt that she had still not entirely reclaimed her real self.

Did you tell anyone how you felt about ECT?

Most participants had felt unable to tell psychiatrists or other professionals of the strength of their feelings about ECT, for the same reasons that prevented them refusing to have it in the first place. The few who tried to hint at their reluctance and terror felt they had been met with little response:

LJ "Did you explain to anyone how traumatic it had been for you?"

"No, I didn't dare. They had complete control over you, they could lock you up. You can't be angry with them. People who are, get a really bad time."

"Once or twice I've been able to say that I think it's a waste of time ....and they say you've got to complete the course now, you've got to go through to the end and it's best for you and you're not in any fit state at the moment to know what you want. It's like the power's taken away from you all the time."

"I can remember asking him (the consultant) about what happened about me coming round (from the ECT) crying, and telling him I felt really frightened having it. And he certainly didn't acknowledge the fact it was frightening."

"I always said I wasn't feeling any better, but they started saying towards the end they thought I was feeling better, and I discovered a lot later that on my notes they invented that the ECT had been a successful treatment, and there was no way I was any better .....At the end of the treatment I had a meeting with the consultant who said he thought I was biologically cured of depression ....The implication was, I suppose, that all the other things were just personal things I'd got to sort out."

It is perhaps not surprising that the experience of ECT had left some participants with a lasting distrust of mental health professionals and hospitals:

"When I was in hospital last time I was terrified that they were going to give it to me again. They promised they wouldn't, but can I trust them, can I trust them? I was terrified, I hated walking across the room where they did it."

"It was a useful lesson really. It's not sensible in this world to tell psychiatrists of your, what they call 'delusional systems', and in fact I never told them another one."

(This woman was feeling suicidal around the time of the interview, but had deliberately not told her community psychiatric nurse. She had previously had ECT under section.): "They've only got to mention the word hospital to me and I freak out ....when I go into hospital, I won't trust nobody in there, because my mind runs away with me. Are they going to force me to have ECT? .... I know the staff on the ward, I've been there so many times, but each time I've been and come away, when I have to go back again I try and build that trust up all over again."

Many participants were very unhappy with other aspects of their psychiatric care, such as the use of medication. However, a number of them made the point that there is something qualitatively different about ECT: the idea of putting electricity through someone's head carries powerful symbolic meanings which still apply no matter how caringly the intervention is delivered. It can be experienced as a brutal assault on your very self:

"I think to tie somebody up and zap them with electricity .....it goes back to the days of Frankenstein, doesn't it."

"Well, it's an assault on your head, isn't it? It's an assault on who you are, you are in your head. And yet you've gone to them expecting them to heal you."

"I would have thought anyone would be apprehensive about something like that, especially when they are messing about with your brain. That's the centre of your being, isn't it?"

"They make it all nice, they're nice to you when you go into the room, they pamper you a bit ....talking to you very personably (sic) and all they want to do is jolt you with a thousand volts ......It goes back to the Jews, doesn't it, who went into this room and had a nice shower."

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