Background:
In 2023, a group of major research funders announced a new joint investment of £4.25m in UK eating disorder research. This followed the publication of the All-Party Parliamentary Group (APPG) on Eating Disorders’ ‘Breaking the Cycle’ report, that was compiled by Beat.
Beat has partnered with two of the funded projects to ensure that the voice of those with lived experience is at the centre of their work to expand and improve research into eating disorders.
This is the second year of the project, following on from the work that was completed in the first year.
This Project:
This is an opportunity to be part of an ambitious project to establish a UK-wide NHS research network which will cover both child and adult eating disorder services; the Eating Disorders Clinical Research Network (EDCRN).
This board sits alongside:
The function of the board is to act as a “critical friend” to the EDCRN, providing guidance at key intervals throughout the timeline of the study. This will enable researchers to improve the lives of those suffering with eating disorders by learning more about why some treatments work better than others, identifying underserved groups and understanding how to make adaptions to people’s care to make it more effective. The network will also enable many more people with lived experience to take part in the pioneering Eating Disorders Genetics Initiative (EDGI) study.
This project is planned and co-led with people with lived experience. It will provide an opportunity for you to be involved in research and contribute to what is happening in clinical services. As well as this it will give you practical experience with research and coming together with like-minded individuals to have your voice heard and improve services in the future.
While we are eager to hear from people with a range of eating disorder experiences (e.g. both lived and living), we recognise that some of the material discussed at Board meetings may be triggering to people actively experiencing an eating disorder. If you feel that this could be an issue, this may not be the right opportunity for you.
Role description:
Benefits of taking part:
Becoming an advisory board member is an exciting opportunity to make positive change to the care and treatment of eating disorders across the U.K.
By becoming a member, you will receive:
Who are we looking for?
We are looking for people with lived experience of having an eating disorder, aged 12-17, based in the U.K. All panel members must be in stable recovery of their eating disorder for at least 18 months.
The recovery criteria for panel members are defined 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.
Advisory Board Meetings:
As part of the advisory board, you would meet with fellow members as part of a group of up to ten people. There will be three 2-hour board meetings a year between January and September 2025, all conducted via Zoom.
Beat Co-Production staff will facilitate meetings and there will also be dedicated staff available to provide any support needed. Beat and clinical staff will also be available for support before and after meetings.
KCL and Beat 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 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
Want to Take Part?
If you would like to become an advisory board member on the KCL 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 advisory board, what will be involved, support available, meet staff members you would be working with and ask 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: https://forms.office.com/e/TMu5z4FTHq
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.