Wednesday 22 July 2026
First Steps ED, supported by members of the REDCAN network, is today (Wednesday) calling on the National Institute for Health and Care Excellence (NICE) to update its eating disorders guideline to include Avoidant/Restrictive Food Intake Disorder (ARFID) – the only eating disorder currently excluded from the guidance that influences clinical care across England.
The call is backed by a new report, “Improving ARFID Care: Learning from Experience”, which brings together the experiences of service users and families from four eating disorder charities. Their accounts describe years of misdiagnosis, families accused of neglect when seeking help, children losing safe foods because of well-meaning but harmful school messaging, and adults forced to fund their own nutritional supplements after being turned away by NHS services.
ARFID is a feeding and eating disorder characterised by extreme avoidance or restriction of food intake – not driven by concerns about weight or body image, but by sensory sensitivity, fear of aversive consequences such as choking, or low interest in food. It was only formally recognised as a diagnosis in 2013, and awareness among healthcare professionals remains low. Despite many people having never heard of it, 29% of First Steps ED’s referrals in June were ARFID-related.
Because ARFID sits outside the NICE guideline NG69, there is no nationally recognised treatment pathway. GPs have no framework for identifying or referring it and most NHS eating disorder services do not treat it. Families are passed from service to service, often waiting years for a diagnosis and finding, when they do, that no funded local provision exists.
Charities including First Steps ED have pioneered treatment pathways and are already delivering the kind of person-centred, knowledgeable care that produces positive outcomes – but without sustainable funding, that support is not available to everyone who needs it.
The report’s four recommendations are: that educators and healthcare professionals receive mandatory ARFID training, and that schools adopt an “all food is good food” approach for children with the condition; that the blame culture experienced by parents is addressed; that national guidelines are introduced for the prescription and funding of nutritional supplements; and that commissioners fund and scale the peer support models already developed by the charity sector, rather than waiting for the NHS to build equivalent expertise from scratch.
Daniel Magson, CEO at First Steps ED, said: “The voices of people affected by ARFID and their families are rarely heard. Low awareness is often flagged as an issue that makes diagnosis, treatment and everyday life harder for those with ARFID, but our roundtable highlighted issues we didn’t expect – like the lack of support in schools, how parents feel blamed by authorities and the financial burden on families.
“The recommendations in our report are not ambitious or expensive in themselves. They require will, training, and a small number of policy changes. Most importantly, they also require professionals, commissioners and funders to recognise ARFID as a condition and the expertise that has been built by charities like ours. Including ARFID in the NICE guidelines and treating it like any other eating disorder will be a crucial first step in ensuring it is taken seriously and enabling the smaller, simple changes to take place.”
Rowan Miller, Development Director at REDCAN (Regional Eating Disorder Charities Alliance and Network) said: “Eating disorder charities know that ARFID can lead to serious medical consequences for young people and adults. The rising number of people with ARFID that our specialist charities support shows how big the problem is. Yet there’s no mention of ARFID in NICE guidelines, which means people go undiagnosed by the NHS for too long and miss out on the help they need. If NICE includes ARFID into eating disorders guidelines, GPs and others will be more likely to refer people earlier to experienced agencies like ours, so they get the right help.”
Richard Quigley MP said: “For people living with ARFID and their parents and carers, it feels like there are no routes to help. It’s absolutely right that NICE guidelines should include an ARFID pathway – just because it’s a difficult eating disorder to treat, doesn’t mean we shouldn’t do everything we can to try.”
First Steps ED and its REDCAN partners are calling on NICE to open a scoping review for the inclusion of ARFID in NG69, and on NHS commissioners to begin funding specialist VCSE providers to deliver ARFID care now, ahead of any guideline update.
The full report is available at https://firststepsed.co.uk/blog/improving-arfid-care-learning-from-experience/
ENDS
For media enquiries, please contact First Steps ED’s Communications Consultant, Rachel Gonzaga, on 07918 590 166.
Notes to editors:
About First Steps ED
First Steps ED is a national eating disorder charity supporting people of all ages, genders and backgrounds. In the field of eating disorders, we offer the widest range of high-quality care focused on the needs of the individual. The services include psychotherapy, counselling, workshops, peer support and online tools for everyone impacted by eating disorders, including family and loved ones. https://firststepsed.co.uk/
About REDCAN
REDCAN is the UK’s alliance of regional eating disorder charities. We’re eight specialist agencies working across different parts of the country to support people with eating disorders and eating distress to recover, and to prevent eating disorders from happening. We aim to transform UK support so that anyone with eating distress or an eating disorder can get the right help in their community. We want prevention of and early intervention for eating disorders to become a national priority.