The number of people in the UK who have a previously little-known eating disorder, in which those afflicted avoid many foods, has risen sevenfold in five years, figures show.
The eating disorders charity Beat received 295 calls about avoidant restrictive food intake disorder (Arfid) in 2018 – comprising 2% of its 20,535 inquiries that year. However, it received 2,054 calls last year, which accounted for one in 10 of its 20,535 requests for help. Many were from children and young people or their parents.
Andrew Radford, Beat’s chief executive, said: “It’s extremely worrying that there has been such a dramatic increase in those seeking support for Arfid, particularly as specialist care isn’t always readily available.”
Patchy provision of NHS help meant many people were experiencing long delays before accessing support, he added.
Eight in 10 eating disorder service providers did not state on their website whether or not they offered Arfid care, research by Beat found.
“All too often we hear from people who have been unable to get treatment close to home or have faced waits of months or even years to get the help they need,” Radford said.
Arfid is much less well-known than anorexia or bulimia. It is “an eating disorder that rarely gets the attention it deserves”. The sharp increase in cases should prompt NHS chiefs to end the postcode lottery in care for Arfid and ensure that every region of England had a team of staff fully trained to treat it, he added.
“Unlike other eating disorders such as anorexia or bulimia, Arfid isn’t driven by feelings around [someone’s] weight or shape,” Radford said. “Instead, it might be due to having sensory issues around the texture or taste of certain foods, fear about eating due to distressing experiences with food, for example choking, or lack of interest in eating.”
The disorder can be especially challenging to diagnose because it has such a wide range of symptoms that include:
Feeling full after eating only a few mouthfuls and struggling to consume more.
Taking a long time over mealtimes or finding eating a chore.
Sensitivity to the texture, smell or temperature of foods.
Eating the same meals repeatedly or eating food only of the same colour, such as beige.
Radford said: “As with any eating disorder, there’s a risk of physical complications such as malnutrition, but due to the lack of awareness around [Arfid] the risks aren’t always recognised and medical emergencies can be downplayed.”
It is unknown how many people in the UK have Arfid. But given that studies have found that between 1% and 18% of those with an eating disorder have it, and that 1.25 million Britons have an eating disorder, the number of people with Arfid could range from 12,500 and 225,000 sufferers, according to Beat.
An NHS Digital survey in November on the mental health of children and young people in England aged eight to 25 found that one in eight (12.5%) of those aged 17-19 had an eating disorder last year. Rates were four times higher in young women than young men.
Dr Amy Wicksteed, the chair of the British Psychological Society’s faculty for eating disorders, said the rise in calls to Beat about Arfid “was concerning and in keeping with similar trends reported within the US regarding calls to health insurance claim lines. Unlike some other eating disorders, it isn’t caused by a negative body image or a desire to lose weight.”
She said the three main presentation of Arfid were:
Avoidance of sensory aspects, such as particular tastes, smells, textures and look of foods.
An apparent lack of interest in food.
Concern about adverse consequences, such as a fear of choking or vomiting or fear of new foods
NHS eating disorders services have been struggling to cope with a post-Covid spike in the number of people seeking help. Referrals during the pandemic rose by 50%, NHS England said.
A spokesperson said: “The NHS is clear that improving care for people with an eating disorder is vital, with investment, targeted support and training helping to develop community eating disorder teams in all areas of England.”
• This article was amended on 27 February 2024 to make it clear that not all of the three features described by Dr Amy Wicksteed have to be present for a diagnosis of Arfid.
