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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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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