Seen But Not Heard: Understanding Eating Disorders

‘Seen But Not Heard’ is a collective advocacy eating disorder project at CAPS.

5 May 2020 The current Coronavirus situation is unprecedented. It is causing 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, Seen But Not Heard, have put 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.

Download Covid-19 – Eating Disorder Experiences CAPS 2020


It involves a collective advocacy group of people with lived experience of eating disorders who come together and share their stories to create awareness, to help educate others and to reduce stigma. They are involved in decisions regarding pieces of work, how the project is developed and facilitated by a CAPS worker, who also has lived experience.

The group has produced two films, including one directly related to young people’s experiences, called ‘Spilling the Beans.’ There is a training workshop delivered by the group which 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. It is proving to be a very successful project and has shown there is a need for those with lived experience to have their voices heard.

Currently, the advocacy group meet regularly and are still delivering training sessions as well as high school visits using ‘Spilling the Beans’. There are plans for another event soon.

If you would like to know more about any of the work or would like to become involved as part of a collective eating disorder project, please contact Niamh at


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.

Niamh Allen and 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 lead to the creation of the collective advocacy project and in 2014 Niamh Allen was employed to develop this further. A steering group of people with lived experience of eating disorders came together. The film was used by arranging film screenings, facilitating discussions and relating personal experiences throughout high schools, universities and Eating Disorder Units across Edinburgh and the Lothians.

The group then designed a training workshop – ‘Understanding Eating Disorders’ and this has been delivered to students at Queen Margaret University studying Art and Music Psychotherapy and Occupational Therapy, as well as to clinical psychology students at Edinburgh University. The training has also been developed to deliver through LEARN (Lothian Education and Recovery Network) and is available approximately every two months.

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.

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

This GP resource pack was developed by the collective advocacy group to produce information from their perspective that would be helpful for GPs to better understand how to offer good care and treatment to people who need their help. The booklet contains real stories and experiences that people with eating disorders can relate to and feel encouraged by. Thanks to extra funding from the Butterfly Bursary we were able to print more copies of the poster and booklet. An online version of the booklet is available here.


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.


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