Caring for someone having ECT
There are millions of carers throughout the UK, many looking after loved ones who are serious ill, and the contribution of carers to society is...
We asked people we spoke to if they had any messages they wanted to give to people considering or going through ECT.
Some people wanted to give “positive” messages about ECT. They said:
Others wanted to emphasise the need to be cautious when deciding to have ECT. They said:
Some of the people we spoke to said ECT is nothing to be scared of, and it does produce results. A few people even said ECT was a pleasant experience, e.g. “I looked forward to the ECT… I was just happy that it worked.” Some people like Annie and Lorraine wanted to let others know it could be an effective treatment. Sunil said “ECT is life saving for someone who is suicidal”.
Whatever people felt about the effectiveness of ECT, they described how important it was to get information about what the treatment would involve, what the possible side effects were, and what other people’s experiences had been. The internet was said to be a good place to start to find out information and to get stories of others who had been through ECT (see for more ‘Getting information about ECT’).
Steve suggested being involved with user meetings and getting more information directly from the psychiatrist or a local patient group. He had been to his local MIND group where he met people who had been through ECT, which meant he and his wife knew what to expect. Albert said it was important for people having or who had had ECT to get together and to share their experiences with medical professionals.
Lorraine and Annie suggested anyone considering ECT should find out as much as they can, and talk to anyone who has had the same experience, and ask what treatment they had, how they felt it had helped. It may help to ask to be shown around the ECT treatment room first if that is comforting. Finding out about expected side effects may help some people too. While carers are more valued these days, they may still need to be assertive.
Some people pointed out that it was important to pay attention to the doctor’s own assessment and recommendation about ECT and about what medications are suitable.
At the time when ECT was suggested to people as a treatment option, they were often very unwell and distressed. People spoke about how difficult it could be to take in information or make treatment decisions when they were feeling severely depressed. However Jane said that health professionals should continue to try to explain ECT to inpatients even if this was difficult. People stressed the importance of health professionals being understanding and giving them as much information as possible including talking about any side effects that they might experience. Some people said it was important for health professionals to:
People do feel less frightened if staff are welcoming, friendly and make what is about to happen seem normal. Equally, people do recall dehumanising experiences with dread and may find it traumatising.
The timing of giving information about ECT is also thought to be important:
Hearing other people’s stories was very helpful for many. Jenny said the only information that really ultimately helps is stories of ordinary people. Tristan said he would have liked more information about how people tend to recover, and the patterns of recovery. Some felt that more research needed to be done in general about ECT, how it works and its effects. Sue suggested there should be follow-up and someone should keep records of people’s experiences of after effects, responses to ECT, attitudes and feelings.
Some found joining user groups was a useful way to give back, provide feedback and change practices. Beattie got involved with a local user group and sits on committees and interview panels for Approved Mental Health Professionals. She feels this way she is able to help improve services and can review health professionals.
There are millions of carers throughout the UK, many looking after loved ones who are serious ill, and the contribution of carers to society is...