The University of East London has launched the first ever international survey of people who have received electroconvulsive therapy (ECT). The survey is also unique in that it is the first to simultaneously survey the relatives and friends of ECT recipients.
The principal researcher is Dr John Read, Professor of Clinical Psychology at the University of East London. He has published multiple reviews of the ECT research literature and several audits of how ECT is administered in the UK.
The research team includes three women who have had ECT themselves, from the USA, England and Northern Ireland.
The survey, a draft of which was reviewed by Mind, the UK’s largest mental health NGO, includes questions on the positive and negative effects of the treatment. It also covers what information patients and relatives were given prior to the treatment.
There are also questions about the causes of the problems for which ECT was prescribed, such as depression, and whether the social causes (such as loneliness, bereavement, abuse and poverty) were addressed before resorting to ECT.
Most ECT studies report assessments of efficacy and adverse effects made by the psychiatrists who gave the ECT and tend to produce generally favourable outcomes. But several small studies asking patients directly, in the 1980s and 1990s, found rates of permanent memory loss in between 29% and 55% of patients.
“A large scale international survey of patients’ experiences - positive, negative and mixed - of this controversial approach to treatment, is long overdue. Although their views of whether ECT is effective and safe is just as subjective as the views of the psychiatrists involved, we believe that their voices, and those of their loved ones, should be heard.”
The views and experiences of people using services and those supporting them are essential and too often not heard.
“ECT has caused huge gaps in my memory. It’s particularly distressing as a Mum to have lost significant memories of my children growing up. I know not everyone’s memory is affected that way and some people feel ECT has helped them. The views and experiences of people using services and those supporting them are essential and too often not heard. The treatment can sometimes affect relatives too and their relationship with those receiving it. We want everybody to know their experiences matter.”
The online, anonymous survey is open to anyone who is at least 18 years old and has had ECT, other than in the last 4 weeks. The study has been approved by the University of East London Ethics Committee
Click here to complete the survey.
For further information you can contact Lisa Morrison on firstname.lastname@example.org