ANCORRA (Anorexia Nervosa: Comparison of Refeeding Rates in Adults) project

Background:

The ANCORRA (Anorexia Nervosa: Comparison of Refeeding Rates in Adults) project is being run by Cambridge and Peterborough NHS Foundation Trust and the University of Sheffield.

About 200,000 people in the UK live with anorexia. When they go into the hospital for help, doctors aren't sure exactly how much food they should give them at first.

• If they give too little, the person stays weak and recovers slowly.
• If they give too much too quickly, it can cause "refeeding syndrome" - a serious health problem where the body’s chemistry gets out of balance.

We want to find out which is better: a ‘higher calorie’ or ‘lower calorie’ meal plan. We especially want to make sure this research includes people often missed by care, such as men, ethnic minorities, and neurodivergent people.

This Project:

This study happens in two stages:

• Stage 1 (Checking if it feasible & realistic): We will talk to patients, their families (carers), and doctors to see if our study plan is realistic. We want to make sure the meal plans are acceptable and that it’s easy for people from all backgrounds to take part.
• Stage 2 (The Trial): If the plan works, we will start the main study. When a patient arrives at the hospital, they will be given one of the two meal plans. Which one they get is decided by chance (like flipping a coin).

In stage 2, We will follow 536 patients for a year to see how much weight they gain, how long they stay in the hospital, and - most importantly - how they feel. We will keep listening to feedback from patients and staff to make the study as easy and helpful as possible.

Why we need your input:

There will be three ways in which we will seek input into our study:

• PPI panel. This will be an online meeting with a group of other EBEs who have experienced refeeding for anorexia. The panel will meet regularly, around every 6 months, over the next 5 years. In the PPI panel meetings, we will seek your advice on the design of our study to help ensure we are doing something that really helps patients and makes them feel supported. In doing so, we will minimise the barriers to taking part in the study, discussing topics such as how to recruit people, consent people and collect data from people. We will seek your thoughts on the questions we will ask people with lived experience about their experience of treatment and their views about our study. We will also explore how to tell people about the results of the study.

• Carer panel. This will be similar to the PPI panel but attended by carers of those that have experienced refeeding for anorexia.

• Workshop. We would like to invite EBEs and carers to a workshop to discuss our proposed study. In this workshop, we will firstly tell you what other people (EBEs, carers, medical staff) have told us about the research, and then you can have your say on whether you think the project is doable. We will work with you to finalise how the study is designed, for example how people are recruited and how we collect data.

Role description:

• To bring your own, unique lived experience of eating disorders to contribute towards the project to ensure the voices of those with lived experience are heard.
• Contribute ideas, suggestions & actively take part in decision making.
• Be mindful and respectful of other people’s experiences and viewpoints, recognising that each board members’ experience is valid and welcomed.
• Complete any allocated tasks, including reading necessary information, and contribute to group actions.
• Ensure communication is honest and open, and where appropriate, challenge respectfully and be mindful and considerate of other people’s feelings.
• Ensure that you uphold principles of equality, diversity and being inclusive.
• Asking for help if required and seeking support to ensure your wellbeing from appropriate Beat members of staff.

Benefits of taking part:

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:

• A training session delivered by Beat on becoming an advisory group member
• A tailored support plan developed collaboratively with yourself and Beat
• Payment for the time you contribute towards taking part in the board

Who are we looking for?

For the PPI panels, we are looking for 15 Experts by Experience (EBEs). One panel will consist of 10 EBEs with lived experience of anorexia and hospital admission for refeeding. The second panel will consist of 5 EBEs of caring for someone with anorexia and hospital admission for refeeding.

For the workshops, we are looking for 15 Experts by Experience (EBEs). We are looking for 10 EBEs with lived experience of anorexia and hospital admission for refeeding, and 5 EBEs of caring for someone with anorexia and hospital admission for refeeding.

All participants must be 18+, based in the UK, and meet our wellbeing criteria below:

• You are able to manage eating disorder thoughts and identify potential triggers, with healthy ways to address these.
• You are willing to discuss any current eating disorder thoughts or behaviours with the Co-Production team, who will assess the safety of you taking part in the project.
• There is no requirement for previous professional support or diagnosis. If you have had professional support, we will ask you if you are currently accessing treatment for your eating disorder and assess the impact this may have on your taking part.

We want to make sure that our advisory boards are fully representative of the diverse communities across the UK, and so we are particularly keen to hear from people from people who identify with any of the following:

• Minoritised ethnic, national and cultural backgrounds
• LGBTQIA+ communities
• People with physical disabilities
• Neurodiversity
• Men

Meetings:

For the PPI panels, there will be two meetings per year throughout the project. Each meeting will be 2 hours long. The panels will be held from April 2026 to December 2030. There is potential for two panel meetings in person (one in Year 1, one in Year 5), which will take place in Sheffield. The rest of the panels will take place virtually via Zoom.

For the workshops, you will be asked to attend a workshop in the first year of the project for half a day. The workshop will be held in February 2027 in Sheffield or Cambridge.

CPFT and The University of Sheffield staff will facilitate the meetings and workshops and there will also be dedicated Beat staff available to provide any support needed. Beat staff will also be available for support before and after meetings.

CPFT 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 £27.50 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 [JR11] [RC12]

Want to Take Part?

If you would like to become a member on this 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 project, 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 Tuesday 24 March 6-7pm.

To register for an information session please complete our sign-up form:

ANCORRA Information Session Form – 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.