What does the group do?
“Seen But Not Heard” is a collective advocacy project for people with experience of all kinds of eating disorders, who live in Lothian. It is a space where people with lived experience of eating disorders can come together and share their stories to create awareness, to help educate others, and to reduce stigma. We draw on our experience to raise awareness with the view of improving knowledge about eating disorders and eating disorder services. The project began with the film ‘Seen But Not Heard’ and was funded by The Butterfly Bursary. High schools, universities and eating disorder units across Edinburgh and the Lothians have used the film for facilitating discussions and relating personal experiences. Since then, we have created another film, a GP resources pack about eating disorders, and hosted awareness events.
Current Projects:
Eating Disorders Research
We received funding from Thrive Edinburgh to carry out experience led research into “Men and Eating Disorders”. We have conducted interviews, analysed the data, and written a full research report. We presented a research poster at the NRS Mental Health Research conference in November. We have also presented the research to the National Eating Disorder Network group. The research findings reflect a need for both cisgender and transgender men’s voices to be heard.
Publication of ‘Exploring Recovery’ article in International Journal of Mad Studies
In 2024, several group members submitted an article for publication in the International Journal of Mad Studies for their special issue ‘Critical Eating Dis/order Studies: Madly Questioning Eating Orders’. The article is based on an open discussion between five adults who have experienced/continue to experience various forms of eating disorders. We discussed the notion of recovery and how expert choice is always given more value than lived experience. This article will be published soon.
Rewrite of ‘Overcoming’ Series
In 2018, some of the group were involved in the rewrite of the book Overcoming Anorexia by Dr. Chris Freeman. Dr. Patricia Graham had undertaken the rewrite and asked the group to help reshape the self-help section, as it felt important to include the views of those with lived experience. We have continued to work on subsequent books in the ‘Overcoming…’ series including ‘Overcoming Bulimia Nervosa’ and are currently in the process of rewriting the book ‘Overcoming Binge Eating Disorder’. Working with Dr. Joanne Waine and Dr. Madeleine Tatham has been a wonderful experience and they expressed why it has been important to have our group involved with the project.
“Knowing that we are truly including the real experts – those who have used our services and are experts by experience”
- Dr. Joanne Waine
Education as Advocacy
We continue to deliver educational workshops to raise awareness of eating disorders. Recently we have delivered workshops to counsellors at LGBT+ Health and Wellbeing to raise awareness of the intersection between eating disorders and marginalised identities. We have also delivered workshops to art therapy students at Queen Margarets University for multiple years, social work students at the University of Edinburgh, and to secondary schools.
“The workshop gave me a better idea of the scope of eating disorders and helped dispel stereotypes so I can meet my clients more easily with openness and curiosity”
– Feedback from ED Awareness Workshop to LGBT+ Health and Wellbeing
We recently developed a new workshop delivering eating disorder training for fitness professionals and gyms as this was identified as a need in the recent National Specification for Eating Disorder Care and is something that has come up a lot in group meetings. We delivered the workshop to a popular gym in Stockbridge, and already have two more workshops to gyms in the Edinburgh area lined up.
“The information provided was useful and relevant and highlighted why as the ‘front line’ we can be doing so much more to help and spot eating disorders early”
- Feedback from ED Awareness Workshop to Personal Trainers at F45 Stockbridge
What would be lost if the group ends?
If the group ends, all of our current ongoing projects would come to an end. This includes the rewrite of the ‘Overcoming Binge Eating’ book, the Men and Eating Disorders research, and the upcoming workshops to personal trainers and students. These projects are incredibly important to educate and raise awareness of eating disorders and directly fulfil the new specifications for eating disorder care in Scotland.
Without this group, we would lose a platform to have our voices heard and the ability to share our experiences to increase awareness of eating disorders. We would lose a collective advocacy group that has done incredible work in Edinburgh and Lothian for over 10 years. Our own research has shown how much the stigma attached to eating disorders can prevent people from seeking treatment and can result in delayed diagnosis. This collective advocacy group challenges these stereotypes attached to eating disorders. Losing this collective advocacy group would mean taking away a key educational resource for students, professionals, and third-sector organisations to learn about eating disorders. This group has given us a place to connect with others and a place where we can make a difference to eating disorder services. Taking away this group means taking away our voices when they are desperately needed.
Read more testimonials here.