Sue suffered sexual abuse as a child and has had a history of mental health problems. Five years ago she was given ECT, aged 45. Sue and Ian felt they weren’t given enough information about the treatment and that more research should be done about the emotional impact of ECT.
Sue experienced sexual abuse as a child and was strongly affected by the death of her grandfather at aged 15. Sue felt she had a mood disorder at this age. She developed a range of psychological problems in response to the fear she had felt because of the abuse and the way she was manipulated by her abuser. Sue has had different diagnoses including: psychosis, personality disorder and bipolar affective disorder. She has had over 15 hospital admissions over the last 17 years.
Five years ago she was given ECT. Sue had been sectioned’. Whilst an inpatient, she wasn’t responding to antidepressant medication and ECT was presented to her and her partner Ian, as the last treatment option. Ian initially said no to ECT as Sue had only been in hospital six weeks. He didn’t feel he was in a position to properly research ECT, and felt that hearing about other people’s experiences would have helped him with his decision. Ian trusted the opinion of the nurse and the psychiatrist at the time.
Sue was supposed to have ECT twice a week but Ian said that she wasn’t given ECT every week and was sometimes left for two or three weeks before having another treatment. Sue had 12 sessions overall, but these treatments were spread over months. Sue and Ian were always uncertain when the next ECT session was going to be. In addition, Ian never knew which hospital the ECT was going to take place in. Sue also said that she needed a lot of anaesthetic to lose consciousness and found it quite distressing when people panicked when the anaesthetic was seemingly not working.
Before having ECT, Sue thought she was going to have a visible fit and wished someone had explained to her that the only physical signs of a fit would be her toes twitching. She remembers feeling quite confused when she came around from the anaesthetic. Although she had read information about ECT, she didn’t feel in control of the process. She was also unsure of the legal situation in regards to consent and felt she could have been forced to have it. She felt that the general anaesthetic was an emotional way of holding her down. In this way, having the anaesthetic felt similar to the abuse she had experienced in her childhood. When she went to another unit, she had two staff members accompanying her and said she felt like a prisoner. Ian felt there was very little communication from the ward. Sue suffered memory problems and a certain amount of brain fog’ because of the ECT.
After these experiences of ECT, Sue had problems being in mental health units. She now doesn’t want to go into hospital for fear of having ECT again. The decision to have ECT has left some issues between Ian and Sue about consent to treatment. Ian felt that he was advised by experts to try ECT after they had tried everything else’.
Sue has had psychotherapy and has talked about the effect that having had ECT has had on her. Sue also found there was very little follow up about her wellbeing and the possible side effects of the ECT. She felt that her experience of ECT was not recorded or evaluated.
Sue thinks that nobody knows how ECT works and that the basic leaflet she was given didn’t go into enough detail about the treatment. She felt she wanted more information but was denied this.
Ian and Sue talked about the longer-term emotional impact of ECT. Sue feels that although research has been done on memory, more research needs to be done on the emotional effect of ECT and that there should be more service user led research.