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Experiences of Eating Disorders

‘Seen But Not Heard’

‘Seen But Not Heard’ is a collective advocacy project for people with experience of all kinds of eating disorders.

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People with lived experience of eating disorders come together and share their stories to create awareness, to help educate others and to reduce stigma. They make the decisions about what is important to them and how this is conveyed. They draw on their experiences to raise awareness with the view to improving knowledge about eating disorders and eating disorder services. The group is facilitated by a CAPS worker, who has lived experience.

If you would like to know more about any of the work or would like to become involved as part of a collective advocacy eating disorder project, please contact our new worker – Iona MacTaggart: iona@capsadvocacy.org 

What has the group been doing? 

The impact of Covid 19 and lockdown restrictions have created a huge change in society, creating uncertainty, anxiety, and disruption to normal lives and normal routines. For people with an eating disorder, this disruption may bring about extra challenges that may be difficult to deal with on top of everything else. Quite often, living with an eating disorder already brings fear and panic, and the current situation has the potential to intensify this. 

The CAPS Eating Disorder collective advocacy group, responded to this unprecedented situation by putting together some information on their experience of living in these extraordinary times, and addressed some concerns that people living with an eating disorder may have.

Read the Covid 19 Eating Disorder Experiences Report 2020

Current work

The group have received funding from Thrive Edinburgh to carry out experience led research. Firstly, they have decided to focus on the little known or understood area of “Men and Eating Disorders.” 

If you’d like to get involved in this exciting new piece of work, contact Iona.

Education

Members of the Eating Disorder group are attending University Health and Social Care courses and speaking to students to raise awareness of what it’s like to live with an eating disorder. The group use their own film, produced a few years ago – ‘Spilling the Beans’. They use storytelling techniques and question and answer sessions to engage and inspire the audience.

There is a public training workshop also delivered by the group – “Understanding Eating Disorders”. This highlights the impacts of eating disorders, what services are available, or in many cases, what services and treatment are not available. It contains personal stories and what those with lived experience would like others to know.  See when the next course is happening.

Background

The project began with the film ‘Seen But Not Heard’ and was funded by The Butterfly Bursary, which is a research and education bursary set up by NHS Lothian in memory of Lindsay Weddell, a vibrant and thoughtful young woman who sadly died from anorexia nervosa.

Volunteers were supported by CAPS in producing a film. The film was launched in December 2013 at the Butterfly Bursary Stakeholder event and was very well received by the audience. Following this the film was shown in the Scottish Parliament during Eating Disorder Awareness Week in February 2014. The film was also screened at The Taking Stock event, which was a conference about the Lothian mental health strategy in May 2014.

The success of the film led to the creation of the collective advocacy project and in 2014 Niamh Allen was employed as the collective advocacy worker to develop this further. A steering group of people with lived experience of eating disorders came together. High schools, universities and Eating Disorder Units across Edinburgh and the Lothians have used the film for facilitating discussions and relating personal experiences. 

CAPS were awarded a grant in 2015, from the Butterfly Bursary, to make another film. This time the focus was with young people, aged 16-24 using advocacy to share their stories and experiences of an eating disorder, in particular how it impacted them at high school and socially. This film, called ‘Spilling the Beans’, was launched in 2016 at the Scottish Parliament.

Resource Pack

CAPS also received a small grant from See Me to produce a GP resource pack about eating disorders; “Living with an Eating Disorder – What you need to know.”

It includes:

  • A poster (for raising awareness in the surgery)
  • A booklet (available in the waiting room for people with eating disorders as well as the general public to take away)
  • An information leaflet for GPs and other members of the primary care team

The group used their own lived experience of eating disorders to offer perspectives on good care and treatment. 

The booklet contains real stories and experiences that people with eating disorders can relate to and feel encouraged by. An online version of the booklet is available

In 2017 the project held an awareness event, a chance to celebrate what has been achieved and to recognise the contributions of all the collective advocacy group involved. It was hugely successful with over 70 people in attendance.

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 was felt important to include the views of those with lived experience.  

In September 2019 the group planned and designed the first CAPS Eating Disorder Conference held in central Edinburgh. Three members of the group spoke about topics that were important to them. This included: Men and eating disorders; Eating disorders and other mental health conditions and Transitions between child and adult services. A guest speaker, Dr Petya Eckler, spoke about the impact of social media on eating disorders. The conference was a huge success with 60 people in attendance.

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