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Electroconvulsive Treatment (ECT)

Support networks

Getting support was vital for many of the people we spoke to. People who had had ECT, and those who cared for them, could easily experience very difficult and isolated episodes. Many felt they needed support desperately at these times in their lives. Mandie researched how mental health is dealt with in other countries and found that treatment and recovery isn’t always about drugs or ECT, it is also about seeking the support of others. 

When people themselves, or someone close to them, first became unwell they often needed practical help. Help with childcare, transport, paying bills or doing household tasks were all valued. Yet, people also said they needed emotional support, information about their rights as a patient in an inpatient ward, or access to support and information for carers. People valued finding someone who really tried to understand what they were going through. It was good if they knew a little about mental health issues as well. Overtime people often got support from organisations that weren’t just focussed on mental health, but on wider issues such as physical fitness, wellbeing and faith/spirituality.

People got support or looked for support at different times in their illness. For example David Z was happy to make decisions on his own when he was having the ECT treatment and didn’t access support workers until after he left hospital.

Throughout their illness people we spoke to received support from a number of different sources: other services users, carers, employers, support groups and charities, friends, church, and their families as well as the NHS. You can read more about support groups and organisations that can help ECT patients and carers in the resources pages: ‘Mental Health Resources’ and ‘Electroconvulsive Therapy Resources’.
 

When David Z was discharged from hospital he had support from social workers, a mental health care worker and a medical team.

When David Z was discharged from hospital he had support from social workers, a mental health care worker and a medical team.

Age at interview: 44
Sex: Male
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And you said you’re quite an independent person. Did you have any support around you at the time?

I had support, but any decisions that were getting taken I was making on my own. So I wasn’t referring to anybody, “Do you think I should do this or not do this?” I was making my own decisions.

And do you have a kind of wider support network that you could…?

I mean I did, but I wasn’t accessing it at the time in hospital. In fact if anything I was quite content just to be just on my own, to be honest.

Okay. And you said you had twenty?

I had twenty sessions over a ten-week period, yes.

And how did you feel when that was complete?

I was a bit worried actually because a) you get used to it and it becomes part of your routine in hospital. But I was worried about when it ended. What would this mean? Would I slide? Would it maybe come back? What, you know, what would happen? And there was a bit of a slide, to be honest. But then about three or four weeks later I was discharged from hospital, so I was dealing with that as well. So it was hard to say. But I was worried about what would happen if they stopped them, you know.

What kind of support did you get in terms of, you know, moving out of hospital for example is quite significant.

Well, there was good support. I mean it was all new to me. I had a social worker appointed to me and I had a mental health care worker appointed and they kind of took me through the whole process of coming back out. 

So actually I felt the support networks were quite good, I felt quite supported. And the medical teams were very good. So I guess my whole experience from what should have been or could have been quite a negative thing was actually quite positive.
Old friends and making new friends
People we spoke to often relied on the help and companionship of friends both at the time of crisis, and in the longer term, to support their recovery. Some spoke about the care they received from lifelong friends before they needed ECT. However, sometimes when people were unwell they didn’t have the support of their usual network of friends or found it difficult to talk to their friends about the illness. Making new friends who understood, or had experience themselves of mental illness (like other patients), could be a great source of comfort.
 

The first time Kathleen became unwell she didn’t confide in many friends, but later she built up a closer network of friends.

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The first time Kathleen became unwell she didn’t confide in many friends, but later she built up a closer network of friends.

Age at interview: 51
Sex: Female
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But it wasn’t anything as bad as the depression I had when I was, when I was over there. I think because again I suppose I hadn’t been for any treatment again and just thought I’d put up with it and hadn’t really got a, first episode anyway, I hadn’t really got a close group of friends that I felt comfortable to confide in. I didn’t feel comfortably confiding with close friends anyway. But that was something that I learnt during that first episode out there. Something I worked on was to trust people and allow myself to be vulnerable with people and be able to share with close friends and that. It wasn’t a weakness and no, I was depressed and yes, it was okay to be depressed.

I did learn a lot more and after that, during that, after, or during that episode, I did make a, build up a group of very close friends that I’d never had before. It sounds horrible doesn’t it. I had friends in this country but no one I felt, I never felt comfortable to talk about very personal things. I kept myself to myself really. But I did learn to, that it was okay to have friends and move on with them, and with the encouragement of my seeing my psychiatrist every week as well. He was very good. Sort of psychotherapy.
While staying in hospital some people said that forming friendships with other patients and even staff provided much needed support as they adjusted to life on a ward. Helen found the friends she made in an old asylum helped her survive her time as an “inmate”. Tracy said that perhaps because the staff didn’t have much time for them in the past, “patients looked after each other”. She made a good friend when she was in hospital, who later became the bridesmaid at her wedding. Perhaps because she had trained as a nurse herself, Tracy also made friends with some of the night staff at the hospital and has kept in touch with them.
 

When Suzanne first arrived in hospital she was too ill to make friends and felt isolated from her family. Later, she was able to take part in the activities on the ward, made friends and even began to enjoy herself.

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When Suzanne first arrived in hospital she was too ill to make friends and felt isolated from her family. Later, she was able to take part in the activities on the ward, made friends and even began to enjoy herself.

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Well it was like I couldn’t leave the hosp… even though I wasn’t, I was still a voluntary patient, I still couldn’t leave the hospital of my own accord and I couldn’t go home to my parents and all I wanted was to be around my family and be round people who knew me when I’m well, so that they would… so that they would interact with me in a way that I was familiar with, I suppose and comfortable with, whereas being in the hospital I was scared to talk to other people and I didn’t know anybody there and I wasn’t really in a state where I could become friends with people because I was so ill. I think for the first three days in hospital I had a kind of blank expression on my face and wore the same clothes, and I just looked like I was in shock, like I had been the few days beforehand when I went in A&E and I was kind of like a bit of a zombie and then I just kind of came out of it like that. I don’t know whether the medication kicked in or whether my brain was just relaxing after being heavily medicated to sleep for a long time. Yes.

Yes. I was going for jogs around the grounds of the hospital and making scones sometimes in OT and doing woodwork and I had a little room to myself in the hospital at that stage and I was starting to work again on my postgraduate work whilst I was in the hospital under, making lots of friends and generally enjoying myself. So it was like, like I was having a holiday there for a while and then they decided they needed the room for somebody who was in need some therapy or help from the hospital and that I should go off home. Go home. So I happily did, yes. 
 

Jane’s friend was a community psychiatric nurse who noticed that Jane was very unwell. She made sure Jane was seen by an “Early Intervention Team” and became her advocate.

Jane’s friend was a community psychiatric nurse who noticed that Jane was very unwell. She made sure Jane was seen by an “Early Intervention Team” and became her advocate.

Age at interview: 38
Sex: Female
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That was when, I think that could have been when he called the doctor initially or called a second time and certainly spoke to a friend of mine and said, “Look she’s really lost it completely.” This particular friend of mine who was a CPN herself, a community psychiatric nurse, contacted the doctor and said that she thought I should be referred to the early intervention psychosis team. The doctor was very loathe to do that, wasn’t really interested. I got referred to the… crisis team and they saw me and then discharged me back to the GP, despite the fact that I really was very ill. 

So thanks to the persistence of my friend I got referred to the early intervention psychosis team. And I was, like I was kind of a bit of exception because they work with people up to the age of 35 and I was actually 35, so they could work with me, but it was a little bit, they were clearly going to work with me beyond the age of 35, because they work with people for up to three years. But I think thanks to my friend’s advocacy and she wrote directly to them and stuff, they did take me on. 
Support Groups, organisations and helplines
Some people accessed groups that were set up to support service users and carers. They benefited from the formal support these groups provided, and particularly valued meeting others who shared their experiences. One woman met her husband at a support group. 

There are national charities that provide support lines for people experiencing difficulties, and for some having someone to talk to confidentially on the end of a phone line was a huge help. Organisations people talked about included:

•    MIND local groups
•    Hafal in Wales
•    Samaritans phone line
•    Other national charities such as Rethink mental Illness
 

Helen relied on the support of the Samaritans. She could talk to them in confidence without worrying that her son would be taken into care.

Helen relied on the support of the Samaritans. She could talk to them in confidence without worrying that her son would be taken into care.

Age at interview: 60
Sex: Female
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And that’s another thing. I’ve had quite a few bad falls because it’s like a stroke. That side of, the right side of my body, the foot curves under and then I fall, which again is frightening, mainly because I didn’t think I’d be able to keep my son. I didn’t, I could never say I was suicidal, only ever to the Samaritans, because that would be the get-out clause, they’d take your babies away, they’d say you’re suicidal and mentally ill and take your babies away. Although I’d never been a bad parent, it was just what they’d done to me. And so you c-, I could never admit to being suicidal. I did at times want to take my son’s life and my life, because it was pretty terrible and because of my sick mind because of what had happened. But the Samaritans were really good and I’d just get through each day really. And I’m very proud really, very pleased with myself. I’ve just come through.
 

Carys felt desperate and phoned the Samaritans when she didn’t have any support with looking after her daughter.

Carys felt desperate and phoned the Samaritans when she didn’t have any support with looking after her daughter.

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But as far as actually support is concerned at the worst times there wasn’t any for anybody I remember in my really, really bad, bad times, occasionally I used to ring the Samaritans because you can just pour everything out to them and they were very good and they would sit and listen to you forever. And in the dead of night when everything was really awful… they were very helpful. They don’t give you advice. Well I mean they can’t really because I mean what would they say? But they will always listen and it doesn’t matter what time of the day or night it is so [crying].

I’m very glad that they were there.

Yes. They were. They were very good. I remember once I rang them and I said, “That I’d phoned them two or three times in the past and I was just ringing them up to say thank you” [laughs]. And they said, “Oh nobody ever says thank you” [laughs]. They said, “People just move on and we don’t hear from them again.” “I said, no, the dead of night is the worst. That’s when all the ghosts come out isn’t it, in the middle of the night when all the horrors happen, and you go through in your brain all the ghastly things, and you don’t know how to solve it, resolve it. It’s just hopeless. 
Catherine Y found that it was only once she had a support worker from a charity that her recovery really began because there was a steady progress in the activities offered, starting with just going out for a cuppa tea, then going swimming, then to the gym. Changing the goal posts and introducing new challenges really helped.
 

Through the Hafal group in Wales, Dafydd attended a carers group and went to conferences about mental health. He learnt more about different approaches to recovery.

Through the Hafal group in Wales, Dafydd attended a carers group and went to conferences about mental health. He learnt more about different approaches to recovery.

Age at interview: 79
Sex: Male
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Well on the positive side as I said after the psychotherapy which followed this and helping how to understand how the illness had developed she has been able to learn methods of dealing with feeling low and to turn her mind to what they call a wise mind, tracking the thoughts to be more positive other than hugging a tree. And this has been constructive and useful but I have been going to carers courses and learning mental health first aid which is useful. 

And I have found the Hafal charity in Wales to be a very useful organisation, very helpful indeed, as they run courses and also have a carers group who can have discussions so any concerns that anybody wants to share or get an opinion about from the mental health workers in Hafal and maybe sometimes get some feedback from other members of the group. It can be very supportive. And the latest development has been proved to be very positive which may well lead to reducing the amount of ECT she’s getting because she’s feeling this way inclined now as in more positive. We went to an international mental health conference which had been arranged through Hafal that we could attend and we had a couple of presentations by very distinguished and very knowledgeable people about their research in mental health. And I attended a workshop which was being run by a man who had had severe mental health problems himself and has written a book about recovery.
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Sheila liked a carers’ café where she could get beauty treatments. She went to a carers group and people from the group have come with her to meetings with healthcare professionals.

Sheila liked a carers’ café where she could get beauty treatments. She went to a carers group and people from the group have come with her to meetings with healthcare professionals.

Age at interview: 64
Sex: Female
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And also they run a carers café which is good because you can have a massage or a pedicure, or… I’m not sure what else they do. Oh I think there’s a hairdresser goes to them, and that’s once a month as well. And for about £2, it used to be free but now they sort of charge for a treatment, but it’s well worth, it’s well worth that. So I do try and go along to the carers cafés as well. Take my grandchildren if they’re around because they like going there and playing because there’s an area for the children to play. And so I do feel I’ve got a good support network as well, and the people that work for [name of service] in [name of town] are very supportive and they, they’re there for me. They say I don’t use them enough. But you know, I don’t like to bother them. They’ve got everybody else’s problems as well. So I don’t, you know, but I know that they’re there if I need them. Or if [coughs] I’ve had professionals meetings which I’ve asked them to come to and one of them has always been there for me and that. So I feel they’re supporting me. They also have been to ward round, on the odd occasion which is good, so I feel that I’ve got the support as well.
 

Enid received support through a mental health charity and the friends she met there and through her church.

Enid received support through a mental health charity and the friends she met there and through her church.

Age at interview: 74
Sex: Female
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Well I got involved through the Mental Health Team. They asked me if I would, you know, like to join and… [name] who was in charge at the time, I used to go out with her on a one to one basis once a week which was, you know, really good, because it was more of a social thing in a sense then, you know, like that again but at the same time you know, she was aware of, of how I was feeling. And then we joined in a group once a week as well. We’d do all sorts of things really. Go to next week I think we’ll wander the Millennium Coastal Path. Some of the people will be riding their bikes and some of us will be walking. And you know, we just have a good social get together. We do all sorts of things and it’s just as I say, I’ve met some incredible people through these things, and I just enjoy getting round being together and that’s good, and church has been very helpful as well. They’ve done a lot of things for [name of husband] when I’ve not been around and… I’ve got some very good friends there that I can talk to, you know, kind of through thick and thin, which is fantastic. I’ve got a good friend there who, who likewise suffers quite badly from depression and it’s good to, you know, have other people that you can talk to who understand kind of, you know, what you’re going through. That’s so er... Yes. I’ve had a lot of support.
Some people accessed help through NHS mental health services and you can read more about that in ‘Relationship with the health and social care’. Sunil, who is a medical consultant, found help through a bipolar service run by a clinical psychologist and went on a course called ‘Mood on Track’ to help him understand his illness and spot early signs of highs and lows so he could “nip things in the bud”.

However some people, like Tristan, avoided support groups for various reasons e.g. they could get negative, yet were still able to find advice and support from individuals.
 

Although Steve wasn’t able to attend any meetings he was in contact with his local MIND group, which organises meetings for carers. He wasn’t sure it would be beneficial to him and had mixed feelings about groups.

Although Steve wasn’t able to attend any meetings he was in contact with his local MIND group, which organises meetings for carers. He wasn’t sure it would be beneficial to him and had mixed feelings about groups.

Age at interview: 60
Sex: Male
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A lot of form filling. I seem to remember there was some sort of holiday break, respite, financial thing going on, which I had a little bit of money for a break. And so yes, I just gave them some feedback really. I think it was form filling. I can’t remember their being an interview as such. I think the, the nurse just wrote down some information and that was sent in to their system, which then went into the MIND, and they contacted me via that meeting.

And then I had an interview with them, with MIND, a person from MIND, and basically they were then telling me about the MIND setup and did I want to go… They were basically just telling me what was available to me as a carer in terms, they were starting up local meetings basically and they were going to have an introductory day. Unfortunately I haven’t been able to go to any of them because they were when I was either working or on holiday, but I’ll probably try and get to one or two of them, but I think they were kind of groups. They were putting together groups of other carers to get together, and just exchange knowledge and give advice I suppose, but there were quite sort of casual type things going on, but that was my sort of introduction to the carers meetings, yes.

And I know you said you haven’t been able to get to the carers meetings since?

I haven’t no.

What are your thoughts on having a bit more of a, I guess formalised involvement, in that sense?

I probably wouldn’t be that keen on sitting with a group, but I suppose something smaller than that, you know, I don’t mind talking to people in the profession to, to give them my experience whatever that is, but no I think the group thing would be too wide an area, it would be just people there from completely different areas of care to myself. I’m not sure how beneficial it would be. I might go to one, just to see what it’s like, but I’ve got sort of mixed feelings about it really.
Carys, who had worked in a carers group for many years, felt that health services did not do enough to recognise the needs of carers, such as providing support when a carer was ill or in hospital. David Y only got help from health services when he was desperate and near breaking point: he had quit work and was struggling to look after his wife and two small children.

Other sources of support
People who were working said they got mixed reactions from their workplaces about their illness. Tracy said that she thought there was still stigma about depression and someone taking time off work for depression would not get much sympathy, “pull yourself together”, whereas someone taking the same time off for surgery or a broken leg would, “oh poor you”. Yvonne found that her managers at her work were very supportive and although she hasn’t had any sick leave due to her mental health, she feels able to speak openly to them and they understand. Alka said that her husband’s work were more understanding about his jaw cancer than about his mental illness.

Sometimes carers wanted support and advice about how to have more input into the care that their loved one was receiving. Carys didn’t know where to go when she decided she wanted to stop her daughter’s ECT treatments. But she thought of going to the Citizen’s Advice Bureau.

A few people spoke about the comfort and support they got from their spirituality and faith
 

Tracy found both her faith and the church had played a big part in her recovery.

Tracy found both her faith and the church had played a big part in her recovery.

Age at interview: 49
Sex: Female
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I think without my faith I wouldn’t be here. You know, when I said about what helps you, you know, my husband, my family, but definitely my God. Definitely, He gives me, you know, my faith gives me my self-worth. Five years ago I was lucky enough to go to Alabama and I’m not interested in birds at all, but I kept seeing these Pelicans and I was just fascinated by them, and I was swimming in the Gulf of Mexico and I was praying and I just said to my, I said to God, “I’d love to see a pelican dive.” And within seconds a pelican dived and picked up a fish. So close to me, it was just amazing and that to me was life changing, that this God that made the universe could be that interested in me, little Tracy, insignificant person, in comparison with all He’s made that He could be bothered to make that happen just for me, that had no significance to any other person. And that was life changing for me. So yes, my faith has a huge part in keeping me sane. Some people would just doubt the sanity though. No but yes, I don’t think I would exist if I didn’t have my faith. So… [wells up] …there you go [laughs].
 

Her faith has helped Enid make sense of her life. Although terrible things have happened to her, she feels she can get through the worst things knowing God is there with her.

Her faith has helped Enid make sense of her life. Although terrible things have happened to her, she feels she can get through the worst things knowing God is there with her.

Age at interview: 74
Sex: Female
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Obviously you’ve got the people at the church and so on and what role has faith played if any in your life, your well-being?

Well you know, for a lot of people I think… kind of question, if you’ve got that much faith, you know, kind of, why do you get ill? But… that’s… that’s like the 21st Psalm, ‘Yea though I walk through the Valley of the Shadow of Death’ I won’t kind of feel any fear. Not because nothing bad happens, but because no matter what does happen… the Lord’s there with you. Even you know, kind of it’s not terrible things don’t happen, terrible things do, you know, people die, people become ill, people have all sorts of things, but, but at the same time God’s love and care is there with you. And… you will get through the worst things. And some things are pretty awful, but no it’s been, been an amazing experience of, and when I went back this time, the first time I got back to the big church because I wasn’t driving and went to the little one locally kind of the first thing that happened, somebody kind of put their arms round me and said, “I’ve been praying for you every day.” And kind of the feeling, that people you know, kind of done that for you. And I know that people are there and they do care about what happens to you. And the love and the acceptance and the things that have gone on are amazing. So yes.

For more see ‘Managing mental illness and recovery’.

Last reviewed January 2018.
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