Electroconvulsive Treatment (ECT)
Getting Information about ECT
People we spoke to had often received information about ECT from medical health staff in the form of a leaflet or through a discussion with their consultant, or from the Internet. Some people found the information that they received very helpful, and others said they were so unwell they didn’t really want much information or couldn’t take it in. But some felt strongly that they did want to know more about ECT. You can read more about people’s first reactions to ECT here: ‘First thoughts about ECT and finding out more’. People who had had ECT a long time ago, like Albert who had it in the 1960s, weren’t given any information about the treatment or possible side effects (for more see ‘Side effects of having ECT’).
This summary is about people who wanted to find out more about ECT. It wasn’t just getting more information that was important but also the way information was given and the timing of the information. For example, Cathy said it would be best if medical staff discussed ECT long before people got to the worst stages of their illness. By the time they really need the information, they are often in crisis and not well enough to absorb it. Catherine Y argued that as long as a person has some capacity to understand what is being said, they should be given information. She said it can help to give examples of how others have responded to ECT along with detailed information about ECT so that they can weigh up the pros and cons for themselves (for more see ‘Messages to others’).
Sheila had some knowledge about ECT from when she worked in a mental health unit twenty years ago, but wanted some up-to-date information. Getting more information gave her a “bigger understanding” of ECT.
Sheila had some knowledge about ECT from when she worked in a mental health unit twenty years ago, but wanted some up-to-date information. Getting more information gave her a “bigger understanding” of ECT.
Just really a bit more up to date, what it’s like now, rather than, you know, years ago. And obviously I feel now I’ve got more of an understanding of mental health than I’ve had in the past, because I try and go to meetings and things or any help that I can get. I try and go to them. But yes, I mean they obviously explain that it’s not as bad as it used to be and that, you know, the leaflets were really sort of just explaining exactly what goes on, and that you’ll be put to sleep and you know, you’ll be woken up not long afterwards, because I mean like the patients don’t know how long, you think oh ECT, is that going to take an hour or, but it is a very, very short, you know, short time that you know, you’re back in the recovery room and things like that. Yes, it just sort of really helped me understand it even more, because when I was actually working with it I didn’t have, well we didn’t have the internet then. So you know, I didn’t really know much about it. So it gave me a bigger understanding of what it’s like.
People wanted to know what to expect from their ECT treatment including:
• whether ECT was going to help them feel better
• how long it might take to work
• how many sessions of ECT they would have
• what would happen on the day of treatment, and
• what the possible side effects might be
Some wanted more detailed information about ECT than this, for example:
• how long the electric shock lasts
• how it works
• why it sometimes doesn’t work
• what causes the side effects
Catherine Y wanted to be able to clarify with the medical team things she’d heard from other patients about ECT.
Catherine Y wanted to be able to clarify with the medical team things she’d heard from other patients about ECT.
And what did you think ECT was? I mean you described sort of having seen it on TV and that sort of thing.
Well, that, yes, that’s exactly it. That’s, that’s, I thought it, well, I really thought, you see people, I mean they talk about obviously being, you know, being given an anaesthetic to be given ECT, and I’m thinking, “Well, why do people jump about when they’re given ECT? You know, I don’t know. What’s that about?” And then coming round, obviously other patients, you see them when they’re coming round. They didn’t know where they were, they couldn’t walk properly, having a really severe headache, memory loss, quite significant for some people afterwards. And somebody did say that they felt that they’d been permanently damaged by it. And all of that kind of information, it was like, “Well, actually I don’t think I want to, really want to go through with this.”
You were saying somebody said, was that from literature or somebody you knew?
It was in the, in the wards, yes, it was other people in the wards kind of saying, saying things like that. And I think it probably would have been more helpful to have had some discussion with the medical team exactly to clarify all the different kind of questions that I had about it and my husband had about it. And to also cla-, sort of ex-, explain to them what I’d heard from other patients and actually, “Is, are these experiences real experiences and, and is it something to watch out for? What h-, what’s the percentage of incidence of that happening?” that kind of thing. But there was, there was no kind of information that came forward about that.
And I think, I think I just, I just didn’t know enough about it. There was too much kind of, you know, “What does it do to the brain? They told me the understanding of how it works, but what does it do?” And I think if you’ve got that gap where you don’t know everything about it, I don’t know if you can really, it’s an individual decision, I think.
Matt said he was promised he could see his wife straight after her first treatment and later told he couldn’t. He felt he wasn’t taken into account or given much information.
Matt said he was promised he could see his wife straight after her first treatment and later told he couldn’t. He felt he wasn’t taken into account or given much information.
And but then I got up to the ward and you know, nobody knew what I was talking about, you know, and I went to the ECT Suite and there wasn’t any way in. There was nobody there. I went to the ward and they said, “Well that never happens, you can’t, you can’t do that.” And that was a fairly kind of common theme, the whole kind of period of, of [name of wife] being ill, was, was my role as her partner. And just not really being taken into account very much, and you know, not getting much information , not being asked for my perspective, you know, not, not, ‘how are you doing?’, but ‘how do you think [name of wife] is doing?’
I was the person who was spending most of the time with her you know, and when she very first became ill, the Crisis Team came out to see her, and didn’t even say hello to me, just literally, just had nothing to do with me at all. Didn’t say, what do you think’s happening, what do you think the problem is? Nothing at all. And that just kind of kept happening.
People we spoke to mentioned a number of places where they had gone for information about ECT, including:
• a public library
• the internet
• speaking to their GP, consultant or other health staff
• speaking to other patients and friends who had had ECT
• attending user groups
• phoning up and/or going to meetings held by mental health charities such as MIND and Hafal
Matt and Catherine Y found some information on the internet quite helpful, such as an information sheet from the Royal College of Psychiatrists. But John Y read stories about ECT “changing your personality”, long-term memory loss and loss of creativity. He was sceptical, and concluded that ECT was a bit “hit and miss”. Alka wanted as much information as she could get, and found American websites were good at providing links to further information. She said it would have been helpful to have had signposts for further information from medical staff.
Others had found it most helpful talking to people who had experienced ECT, either at the hospital or through charities and user groups. Quite a few people, especially those who had had ECT in the past ten years, spoke about getting good information from medical staff. People’s experience of how ECT was explained to them suggested an improvement in the way the health professionals communicate with patients and carers over recent decades. However, a few people thought some medical staff played down the side effects of having ECT (see for more ‘Side effects of having ECT’). Some people had enough time to gather information, get shown around an ECT suite, and talk to staff and other patients. However, others felt some pressure to decide what they thought about ECT quickly. When ECT was presented to them or their loved one as a “last resort” this could add to the burden. Sue said she wanted more information than was in the little A4 leaflet but she was in hospital and couldn’t access the internet to do any research (see ‘Deciding whether to have ECT’).
Last reviewed January 2018.
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