Many people with eating disorders are autistic or have ADHD, which affects how they understand the world. Due to these differences, autistic people and those with ADHD respond less well to eating disorder treatments and NHS eating disorder services cannot meet their needs. They are in urgent need of better support. This project is funded by the National Institute for Health and Care Research (NIHR) and aims to improve the way that NHS eating disorder services support autistic people and those with ADHD.
We will be gathering information about how eating disorder services currently support autistic people and those with ADHD. We will do this by looking at existing literature and by talking to people with lived experience, as well as eating disorder staff. This information will help us design changes to eating disorder services that will enable them to better support autistic people and those with ADHD.
An important part of the project is our Steering Committee, which will meet online at regular intervals throughout the project. The Steering Committee will consist of four people with lived experience, as well as clinicians and researchers. The four people with lived experience will attend a sub-Steering Committee that meets prior to the main Steering Committee meeting. This sub-Steering Committee will be led by a member of the research team with lived experience, providing an accessible environment for the exchange of ideas. Attendance at the main Steering Committee meeting will be optional for those with lived experience, and points raised at the sub-Steering Committee meeting will be taken to the main meeting.
Our meetings will emphasise inclusivity and giving equal value to all types of expertise. Members will work with us to help make our project as beneficial as possible. This will include:
- giving us feedback on our research plans
- giving us feedback on our research findings
- giving us feedback on our proposed changes to eating disorder services
- helping us make our findings accessible and appropriate for different audiences
We want to recruit four people with lived experience, which includes experience of an eating disorder as well as either autism or ADHD (or both).
Influence real change - Your experiences and ideas will help shape how eating disorder services and research improve across the UK. In turn, you will help improve the lives of those affected by eating disorders.
Build valuable skills - Develop confidence, communication, teamwork and leadership skills through co-production and collaboration.
Grow your network - Connect with other people with lived experience, researchers and clinicians who value your perspective.
By joining the project, you will also receive:
We are looking for 4 people (aged 18+) with lived experience of having an eating disorder and either autism and/or ADHD, based in the U.K. All participants must meet our wellbeing criteria below:
We want to make sure that our advisory boards are fully representative of the diverse communities across the U.K., and so we are particularly keen to hear from people from people who identify with any of the following:
As with all our work, we are also committed to representing the full range of eating disorders, including the ‘lesser known’ ones. This includes anyone who may not have a formal diagnosis, and inclusive of both long- and short-term eating disorder experiences.
As part of the Steering Committee, you would meet with three other people with lived experience as part of a sub-Steering Committee that is led by a member of the research team with lived experience. There will be 7 of these meetings between March/April 2026 and June 2027. All meetings will be scheduled for an hour and conducted online via Microsoft Teams.
Within each sub-Steering Committee meetings, you will discuss points to be taken to the main Steering Committee. There will be a main Steering Committee meeting taking place approximately two weeks after each sub-Steering Committee. You would also be invited to these main Steering Committee meetings, which has a total membership of approximately 10 people (four people with lived experience and up to six clinicians and researchers). However, attendance would be optional.
Cardiff University staff will organise and facilitate meetings.
Cardiff University want to acknowledge the valuable expertise those with lived experience will bring to this project, so all board members will be paid for the time they contribute. Payment for participation in sessions, and for any associated preparation, will be £25 per hour in line with the National Institute for Health and Care Research (NIHR) benchmark: https://www.nihr.ac.uk/documents/payment-guidance-for-members-of-the-public-considering-involvement-in-research/27372#citizens-advice-bureau-cab
If you would like to become a member on the steering committee for this Cardiff University project, we would like to invite you to join us at an online information session.
Our information session will be a chance for you to find out more about the steering committee, what will be involved, support available, meeting staff members you would be working with and asking any questions you may have!
We will be having our online information session on:
To register for an information session please complete our sign-up form: Cardiff University Information Session (28th January) – Fill in form
If you cannot attend an information session but would like to know more about the project, please contact Beat’s Co-Production team at coproduction@beateatingdisorders.org.uk.