'Dramatic increase' in people seeking help for ARFID

After we investigated the lack of services in Yorkshire to treat an eating disorder called ARFID, a national charity says it's seen a 'dramatic increase' in people seeking help.

Avoidant/restrictive food intake disorder means people avoid certain foods or limit what they eat. It can happen for a number of reasons, including sensitivity to tastes, textures, or smells, distressing experiences while eating such as choking, and low interest in food.

Eating disorder charity Beat said its helpline received more than 2,000 phone calls in 2023 from people seeking support for ARFID – 10 per cent of the total. That’s up from 295 calls in 2018.

Chief executive of Beat Andrew Radford 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.

"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.

"ARFID is an eating disorder that rarely gets the attention it deserves, and it's unacceptable that that seems to apply to funding, too.

"Now is the time for NHS decision-makers to ensure that anyone who needs support can get it from trained and fully equipped teams across the country."

Last year we told you about the lack of services across Yorkshire to treat ARFID, with a mum from Halifax getting in touch to tell us about her son who’d gone more than 50 days without eating food.

Samantha Loughrey’s 12-year-old son has been fed via a tube since 2021, but she hasn’t managed to find a service that will actually treat the eating disorder.

Almost a year on, we caught up with Samantha who told us she’s still battling to find help.

Her son did receive hospital treatment to get the feeding tube replaced last year after it fell out, but she says they haven’t had any other medical help:

“He’s seen absolutely nobody, and the people he gets referred to just bounce him back because they won’t touch it because of ARFID.

“A dietician has not been in touch with me for over 12 months. I cannot get any medical help for my son.

“It rules his life, he misses out on most things because he can’t be around food.

“He’s very lethargic, very underweight. And it’s very, very stressful on us as parents just trying to get somebody to listen and somebody to help. We’ve given up really.

“It’s a sensory fear of food, and my son’s been like that since he was 18 months old. He’s only eaten one food for the last 6+ years. People just don’t get it. They’ll say ‘he’ll eat eventually’, but it absolutely does not work like that.

“He cries to me and says ‘why am I like this mum, I want to eat, I want to be normal’. And he tries and tries, but it’s just something in his head…I just can’t explain it. It is a fear of food, it’s like seeing spiders that you don’t like every day.”

ARFID was recently in the headlines following the death of 7-year-old Alfie Nicholls in Stockport. He was left extremely malnourished but medical experts had failed to diagnose him with the disorder.

Samantha says she was devastated when she heard about it:

“I was in tears because it has to get to that stage for a child to die for somebody to listen.

“And my child was at that stage a few years ago, and who knows he might be now.

“The lack of understanding from medical professionals…often you’re educating them. That is very, very stressful for a parent to have to do that as well as look after your poorly child.”

An NHS spokesperson said: "During the pandemic, referrals for eating disorders for children increased by almost 50% and the NHS is clear that improving care for people with an eating disorder including ARFID is vital, with investment, targeted support and training helping to develop community eating disorder teams in all areas in England.

"Since 2016, investment in children and young people's community eating disorder services has risen every year, with an extra £54 million per year since last year and extra funding continues to enhance the capacity of community eating disorder teams, including the needs of those with ARFID, across the country."

A spokesperson for NHS West Yorkshire Integrated Care Board said:

"NHS West Yorkshire Integrated Care Board plans to establish an Avoidant Restrictive Food Intake Disorder (ARFID) care pathway for Calderdale, which is being developed as part of the Calderdale Open Minds service (Child and Adolescent Mental Health Services), a partnership of local organisations. These plans are at an early stage.

"Children and young people who are demonstrating restrictive eating patterns can be referred for an ARFID diagnostic assessment to an approved NHS provider. This is usually through a patient’s GP.

"Whilst we cannot comment on individual cases, we would encourage anyone who is worried or has concerns about their follow up care to contact their local health care provider."