Karen Lesley Wells’ lived experience of electroconvulsive therapy (ECT) led to the development of the consumer-led “ECT - Let’s talk about it!” project. Karen used her own experience, and the experiences of her research team and participants to inform the sector about consumer information, consent and support needs. The project team have already made many presentations at conferences, training workshops and services.
The project, which included interviews with 17 people who had undertaken ECT, found that people wanted access to more information about the process, the ability to speak to people who had undertaken ECT previously, and greater involvement of families. More information on the findings is available here.
“We also hope to develop an information resource such as a DVD with our Concord Centre for Mental Health partners and to write a journal article for publication,” says Karen.
“The ECT project demonstrates a gap in the consumer movement and that is fighting stigma. I’ve felt silenced and sometimes I don’t want to talk about it or be judged. I had 200 treatments over a thirteen year period, and that motivated me to start ECT: Let’s Talk About It, because we were failing to do that.”
Inner West Partners in Recovery provided support and funding for the project, which was also supported by the Commission. Other partners were Sydney Local Health District and the University of Sydney.
Karen’s journey with mental illness has been a long and often frustrating road.
Following several drug and alcohol rehabilitation stays, Karen had her first psychotic depression in 2000. She was initially diagnosed with depression and borderline personality disorder. After some time of experiencing psychosis, mania and delusions, Karen’s diagnosis was changed to her current diagnosis of schizoaffective disorder.
Clinicians labelled Karen as ‘treatment resistant’, as nothing she and her treating team of clinicians and psychiatrists tried was working. Eventually, ECT was suggested as a course of treatment.
“ECT was something I decided in partnership with my treating team. I had to trust them because I was desperate for relief and too unwell to be confident in my own treatment decisions. It wasn’t barbaric, or something that I didn’t have a choice about. I feel thankful that when nothing else worked, it got me through,” Karen explains.
In terms of her overall recovery, ECT was only part of the picture. “It took me years to find a medication that worked for me – clozapine - which has its own disadvantages. However, my medication and ECT couldn’t have gotten me to where I am today without weekly therapy and my support network.”
“I have great psychiatrists and medical staff on my treating team. I was very lucky, I know not everyone has the support, compassion and care I was given, especially with my decision to receive ECT.”
It was a long process for Karen to come to a point where she felt okay in the world and could take on new challenges. However, doing so exposed the impact of ECT on her daily life, including memory loss, cognitive issues and stigma.
While for Karen ECT was “lifesaving”, she knows that this is not the case for a lot of consumers. For example, one of the consumer researchers who worked with Karen did not have such a positive outcome. “Lisa has a very different ECT experience from me as it was not helpful and only resulted in the adverse effect of memory loss.” For Karen, the diversity and depth of people’s feelings about ECT is what makes it so important to talk about it openly.
“Our teams’ diverse views and experiences allowed greater representation and respectful dialogue. There are things about ECT that need to change, but it shouldn’t be boycotted as a treatment option. ECT should be on a journey to be improved, just like all mental health treatments.”
Karen has found that researching ECT has helped her recovery while also investigating it’s perception in the community. “Feeling like I’m contributing to making mental health better through my lived experience makes me feel good, and helps me stay well,” Karen says.
Karen’s lived experience of mental illness and the ECT project has spurred her on to study the area further, through enrolling in a research Master’s degree at the University of Sydney. She has found that there is a huge gap in knowledge around ECT and how it impacts on daily living in the long term (including the benefits, negatives and how people manage). In her Master’s degree, Karen plans to answer the question: “How do people who have had or continue to have ECT perceive and adapt to any consequences of ECT in their daily lives?” Anyone interested in sharing their experiences of living with ECT with Karen can find out about this study here.