CHARITIES and counsellors have backed calls for urgent improvements to the way Jersey supports people experiencing a little-known condition that causes extremely restricted eating.
And the chief executive of Jersey Eating Disorders Support has said she has seen a growing number of Islanders presenting with Avoidant/Restrictive Food Intake Disorder known as ARFID.
The condition, which is increasingly recognised within neurodivergent communities such as those with autism or ADHD, is marked by extreme anxiety around food, overwhelming sensory sensitivities, or a fear of choking or vomiting.
Eve Janes, a counsellor and neurodivergent support specialist, said she believed the situation in Jersey was part of a wider national failure to recognise and respond to ARFID.
She described the current level of support on the Island for neurodivergent people on the whole as “an utter disgrace”.
“I have autistic adult clients trying to deal with ARFID themselves in the UK, and even they are struggling to get access to the right support, even when able to access care privately,” she said. “So this really is a national issue that I feel should be addressed as a priority.”
Ms Janes said the lack of professionals trained to recognise and treat ARFID was a barrier to early intervention.
“I would 100% be pushing for more training – training and psychoeducation for first-liners like doctors, nurses, social workers and teachers,” she said. “And of course, more neurodivergent-affirmative counsellors, therapists and specialists for the Island.”
“I think it would be incredible to train up a specialist in ARFID in the Island. But that takes time, and as I have been informed, we’re also without a paediatric nutritionist on the Island now too, so that in addition adds urgency to fill this hole in the care young people of this Island so desperately need.”
The comments come after the JEP this week revealed the experience of 20-year-old Lily Chapman, who was diagnosed with ARFID in 2020 after a 15-year struggle to find answers.
Her mother, Penny Chapman, has since urged the government to create a clear pathway for ARFID diagnosis and treatment, to train professionals and to provide long-term family support.
For Lily, ARFID means being unable to eat more than a handful of very specific foods. She skips meals entirely and cannot swallow many medications, including antibiotics, because her brain processes them like food.
The Health Department has confirmed it is currently reviewing the eating disorder care pathway, including for both adults and children with ARFID.
Meanwhile, JEDS chief executive Karen Dingle spoke about the impact of the condition on both individuals and families and encouraged Islanders to reach out if they needed support.
She said: “It is very hard for anyone caring for or living with someone with ARFID or any eating disorder, so with this in mind, we are considering starting a new Carer Only Support Group which would be peer-led by carers who have supported loved ones with eating disorders.”
JEDS already runs twice-monthly support sessions for adults affected by eating disorders – either directly or as carers – and Ms Dingle said that one of their trainee counsellors discovered they had ARFID themselves after attending the group.
“One of our trainee counsellors discovered that he had ARFID by going to the group support sessions, so he has lived experience of the condition, which can be so helpful in his work with our clients.”
Anyone interested in joining JEDS’ support sessions or registering interest in a carer-only group can email: hello@jeds.je.
