People with eating disorder ARFID feel 'misunderstood and misdiagnosed' in Wales
ITV Wales journalist Marina Jenkins reports
A 21-year-old girl from Pontypridd warns people living with the eating disorder ARFID often misunderstood or misdiagnosed by healthcare professionals.
Rachel is patient under Cwm Taf Morgannwg University Health Board and said, over the years, she was told by doctors she was "just a fussy eater" or wrongly hospitalised with anorexia.
Both Rachel and her mother Debra wanted to share their family's story to raise awareness about this little-known condition.
ARFID stands for avoidant restrictive food intake disorder and sees people avoid eating certain foods or food types. It can be linked to autism.
Debra said: "It’s quite a debilitating eating disorder and so misunderstood. They find everything about food difficult, how it looks, how it smells, how it tastes, the textures, so they restrict their diet based on those things.
"The treatment itself might be similar to other eating disorders but the approach is completely different."
Rachel finally got the right diagnosis when she was 18 and said: "I felt validated, like I’m not weird, I’m not wrong. The thing that we’d been saying was true the whole time was finally being accepted as true."
The number of people living with ARFID in the UK has risen sevenfold in five years, figures show.
In 2018, the eating disorders charity Beat received 295 - 2% of total inquiries. But five years later in 2023, that figure increased to 2,054 calls - now 10% of total inquiries.
The charity put ARFID at the centre of its Eating Disorder Awareness Week campaign which runs from 26 February to 3 March.
Beat’s research found that there is a significant lack of information, research and specialist treatment on ARFID.
The charity's chief executive 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."
Due to the lack of knowledge surrounding ARFID, Debra decided to set-up an online support group which has now reached more than 16,000 members across the UK and Ireland.
"I feel proud of the group itself but also really sad that there are so many people out there that need the support. People can ask any questions and it's key that they don't feel alone anymore. It's a really nice feeling."
A spokesperson for Cwm Taf Morgannwg University Health Board said: “Over recent years, we have made considerable Investments into improving eating disorder services across the life span, including the establishment of our CAMHS Rapid Intervention Service for Eating Disorders (RISE) in 2021.
"The RISE service consists of specialists from a range of disciplines including Psychiatry, Nursing, Dietetics and Psychotherapy, who work collaboratively with families and young people suffering from ARFID. The service offers timely assessments, crisis support and evidenced based therapies.
“Our focus on primary prevention, coupled with early, intensive community based intervention, has seen a significant reduction in the number of young people, including those with ARFID, presenting to services with severe eating disorders.
“Our RISE clinicians are also involved with developing national guidance and helping to shape the strategy for ARFID services across Wales.”
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