What other forms of help would have been more appropriate instead of ECT?

Nearly all participants were convinced, looking back, that ECT and all its disadvantages could have been avoided had the right kind of counselling and support been available instead:

"It was so obvious that one of the things I needed help with was grieving for this friend. I needed to be given some way of knowing that I belonged to the human race."

"You used to say what you thought your troubles was, and she was nice, this doctor I had, and she would talk back and explain everything to me ....If I could have carried on with her, on Valium, I would never have had ECT."

"There was one nurse who was actually a trained counsellor and about three or four years ago I was quite ill and there were things I wasn't disclosing to anybody, not even friends or whatever, and when I was in hospital I managed to talk to her and it all came out, and that was like a step forward."

"Although at that particular time I was very very psychotic, I needed to be allowed to be mad, but be somewhere with human decency and not be so restricted ....I needed someone to talk to more than anything."

"Somebody sitting down with me in a room on your own, talking to you when you needed it ....There were so many people on the ward and only three nurses, so you didn't get a lot of attention."

Ten of the twenty participants had ultimately been able to take up a variety of occupations including student, caretaker, and voluntary or paid worker in the mental health field. Two of the ten felt that they had recovered largely by their own efforts. The other eight had finally found the help they needed through a mixture of counselling/therapy, self-help groups and support from other service users:

"I've had private therapy on and off for about four or five years which I pay for, so that's helped a lot."

"I ultimately found the answer at a tranquilliser withdrawal group. I work for them and we all help and encourage each other, support each other and it's brilliant. And you have to build back your self-esteem, your self-worth, it doesn't just happen .....and it's fantastic."

"I had so much inspiration from other people who were further on (at a support group), and I really just got involved and started helping out there and becoming a bit more empowered ....I just knew that's what I wanted to do, try and help other people in the way that that helped me."

A common theme in this group was how anger at their treatment had turned their earlier compliance and conformity into assertiveness and a determination never to let others take control over them again:

"It taught me a lesson ....always to question, never ever believe professionals, never assume because the doctor is a professional that he knows better than I do about my pain. I'm dreadful in a doctor's surgery. I do honestly make sure I get my time, I need to know what's going on. Never let them control me again like they did."

"It's really starting to come through now ....angry at the way you've been treated by people over the years, doormat, really put upon. I'm really starting to realise how badly at times I've been treated and now I'm changing that and putting my foot down and speaking out about things I'm not very popular, but that's too bad."

"I just feel ....very angry, and basically I know my rights so much now, I'm in charge."

But most people still had unresolved feelings about ECT, in some cases many years later:

"Certainly if I do talk or read about ECT it does bring back all these horrible memories of the actual treatment. I always get the same symptoms, headaches, nausea and things."(23 years on.)

"I had absolutely terrifying lucid dreams. I couldn't explain to you how terrifying they are, it's just beyond words. I started telling this therapist about them to try and make sense (of them) and I always described this feeling as if I was having electricity ....Terrible sensations, feeling like I was just about to die, and very, very lucid dreams, not like ordinary ones, where I wasn't sure if I was awake or asleep."

"This is one of the problems, when I feel I'm bitter towards this person, perhaps I'm not on Jesus's side ....perhaps he hasn't accepted me because I hold this grudge." (A man with strong religious beliefs who was angry with the nurse who had put pressure on him to have ECT.)

"I do feel very angry, and sometimes I just have to stop myself dwelling on it because if I do I just get very angry. It's difficult to know what to do with that anger."

What are your overall views about ECT?

All the participants except one were very clear that they themselves would refuse ECT if they were ever offered it again. The exception was a man who said that he would consent as a "very, very last resort" if he ever became ill again.

One person thought that there was a place for ECT for some people, and thirteen others thought that people should be able to make their own informed decision on the matter. This was a conclusion generally put forward with some reluctance, with two participants adding that in their personal opinion it should be banned. The six remaining participants had no hesitation in calling for a universal ban even if some individuals wanted to have it.

"I think it's up to the individual really. I wouldn't touch it ever, even if I was really ill ....I think if people gave you full information, a lot of people wouldn't have it."

"Personally I think there should be a ban, but until that happens I suppose if users feel it might benefit them, then go ahead, but I'd like to see in the next few years a total ban worldwide."

"It is not justifiable to give people something that harms their brains and gives them an epileptic fit on the NHS. It's just not, in my view, an ethical way to proceed."

Most participants expressed their overall views on ECT in strong terms. They saw it as a blunt instrument that produced brain damage without dealing with the person's real problems:

"It's like being hit on the head by a hammer, that's the way I would describe it ....How do I know they're getting the right area and don't kill cells in a different area? It's a crude tool."

"Well, it deadens your brain, doesn't it? That's what it does."

"They didn't have the time and they didn't have the staff and so I think ECT is just a quick way, a quick job, less expensive."

"It's short-term relief ....obviously until you find a solution to the problem it's just going to recur and you're going to keep on having ECT."

"I think it is barbaric giving it to people on the scale that it is. And I've never actually met anyone who said it had done them any good, so ....I don't know where this eight out of ten figure comes from." (The proportion of people benefiting from ECT, according to this man's consultant.)

"Quite barbaric, really, barbaric to put electric shocks through people's heads."

"I think it works by causing brain damage ....It knocks out the memory ....so being unable to remember the unpleasant feelings, you are less able to feel depressed."

"When you think that shock treatment is a form of torture, then you can see the relationship ....It's very extreme and it's abusive. Well, it's not a treatment really, is it, it's just a violation of a person's body."

"To be treated physically for something that isn't a physical complaint ....I do object to that for emotional, psychic, spiritual problems."

"It is inhuman and inhumane."

 [Previous] - [Next] - [References]