Charity report calls for ARFID to be added to NICE guidelines

A charity report has called for ARFID, or Avoidant Restrictive Food Intake Disorder, to be added to NICE guidelines, warning that patients are being left without specialist care.

ARFID is an eating disorder. Signs can include: - hypersensitivity to taste, texture, smell and appearance - a lack of interest in food - refusal of an entire food group - fear of eating in case of choking or vomiting

It is not picky eating, and it is not driven by body image or a desire to lose weight. The charity BEAT estimates it could affect up to a quarter of the UK population.

The report draws on patients' experiences. Chloe, 18, and her mum Amanda were making the most of the sunshine with a picnic. But it was a light lunch because Chloe feels comfortable eating only a few foods. She said: "I feel exhausted every day because constantly I've got food on my mind." She said she can get bad migraines from looking at meat and would feel sick. Amanda said Chloe is not a fussy eater: she physically and mentally cannot eat foods others eat, such as salmon, because of taste and texture linked to autism, with ARFID adding avoidance.

After 10 sessions with an NHS dietitian, Chloe was told to get help from a charity because there was no further pathway for ARFID. In the South West, fewer than 30 per cent of eating disorder services treat ARFID, compared with almost 90 per cent that treat anorexia, according to the report.

Daniella Peters, whose six-year-old son Tommy has ARFID, said a lack of support from health professionals led her to turn to friends and books for advice. She said a paediatrician appointment told her the family would have to "jump through hoops" to get help. Tommy dropped two centiles in a month, a point at which professionals intervene, but the family was given no further instructions.

Eating disorder charities want ARFID added to NICE guidelines, and the campaign has been backed by MPs. The report says that without this, there is no standardisation process, provision varies by region, and funding is uneven. ARFID has been recognised as an eating disorder since 2013, but there is still no clinical guidance on how to support it within the NHS and charity sectors.

Chloe shared her experiences in the new report, which highlights the need for clear treatment pathways and more awareness. Asked what NICE guidance would change, she said: "I think if there was more known about it, especially from health professionals, you could get more help." She added: "I think it's just sad, really, that the NHS don't know enough, and then we're just kind of left to suffer."

The Department of Health and Social Care did not respond directly to questions about ARFID and the NICE guidelines. It said the NHS has published new guidance to develop and deliver more consistent care for eating disorders in children and young people across the country, including those with ARFID.