Yorkshire families battling 'postcode lottery' to get treatment for rare eating disorder
Private clinics say they're being 'overwhelmed' with referrals for ARFID as people struggle to find treatment on the NHS
Last updated 17th Apr 2023
We can reveal families in Yorkshire battling a little-known eating disorder are facing a postcode lottery to get treatment.
Avoidant Restrictive Food Intake Disorder – more commonly known as ARFID – is a condition where people avoid certain foods, leaving them with an extremely limited list of items that they can eat. Often they have to be a certain brand or presented in a specific way – and the person’s food intake can become so limited they need to be tube fed.
But families around the region have told us the provision for diagnosing and treating it on the NHS remains extremely limited, despite it being recognised medically in the UK since 2013.
"Given the choice, she would starve"
Luane’s 15-year-old daughter has struggled with ARFID since weaning, but it took several years and trips to the health visitor and GP before she finally came across the condition on the internet.
“Given the choice, she would starve herself,” says Luane.
“Literally, she would not eat. She has gone significant numbers of days without eating. And no amount of pressure by anybody will encourage her to eat.
“She’s getting to the point now where she wants to go out with her friends and to go on trips with school, but even just managing a day away from the house is hard.
“When I finally found out what ARFID was and started to speak to professionals, I always got a ‘you think it could be what?’
“When you’re the one that’s in the position of having the knowledge when you’re speaking to medical professionals it’s concerning. But then it’s not like that everywhere. You see a real mixed pattern of provision.”
Her daughter was eventually referred to the CAMHS team in Barnsley where she lives, but they told her they don’t have a pathway to treat ARFID.
Luane says they instead treated her for anorexia, but when it became clear that was actually making things worse they discharged her.
She was then told that Sheffield Children’s Hospital has a treatment pathway, but their request for treatment was declined because they live just outside the Sheffield border.
She eventually got a diagnosis privately, but they could not afford to pay for treatment so her battle with ARFID continues.
South West Yorkshire Partnership NHS Foundation Trust, which runs Barnsley CAMHS, said: “Unfortunately there isn’t a commissioned service for ARFID support In Barnsley. Our CAMHS team work with other providers in the borough to ensure care needs are met wherever possible, and would only discharge someone where it is safe and appropriate to do so.
"We are committed to providing help and care wherever we can to make sure children and young people in Barnsley get the support and care that is appropriate for them and addresses their needs. As a part of the South Yorkshire ICS we are working collaboratively to provide more opportunities for care and support across the area.”
'Nowhere for people to go'
And Luane isn’t alone – we’ve heard from families all over the region experiencing similar problems.
“The diagnosis isn’t new,” says Dr Julia Coakes, a consultant psychologist from Insight Eating based in Leeds.
“I made my first diagnosis in 2014. But the services aren’t meeting the needs.
“They don’t yet have the diagnostic capabilities. You need a clinical psychologist and a dietitian to make the diagnosis together. And there aren’t many psychologists in the CAHMs teams."
The clinic is getting enquiries about ARFID from all over the country, with four referrals on one day recently.
“I have spoken to parents where the child ends up in hospital. I spoke to one recently where they haven’t got a diagnosis of ARFID, but they have got a nasogastric tube.
“So they’re being fed artificially because they don’t eat enough foods, but nobody was trained to give a diagnosis.”
Similarly, the Food Refusal Clinic in Birmingham has an extremely long waiting list with families from all over the country seeking help.
Consultant psychologist Dr Gillian Harris is from there: “The problem is that there’s nowhere for them to go. The GP might refer them to a dietitian, who would know what the child SHOULD eat, but the child just doesn’t eat it. It’s not that they won’t eat it, they can’t eat it.
“I’m spending a lot of time now helping to set up services. We’re trying to move it into the NHS so that people don’t have to come and pay money for a diagnosis they should get for free. It’s a recognised disorder.”
We've asked NHS England for a response.
The local picture
We asked the NHS Integrated Care Boards in Yorkshire and Lincolnshire what provision they currently have for diagnosing and treating ARFID – you can see their responses below:
NHS WEST YORKSHIRE ICB:
Bradford & Craven: No specialist pathway for children and young people with ARFID. If a child is referred to specialist CAMHS with a possible ARFID diagnosis, this will be taken into account within their care and support plan.
Calderdale: Currently considering the commissioning of an ARFID pathway for children and young people
Kirklees: ARFID would form part of the Eating Disorder service commissioned on behalf of Kirklees Health & Care Partnership as part of ‘Thriving Kirklees’
Leeds: No specialist treatment pathway for ARFID
Wakefield: Investment has been agreed to develop an ARFID pathway with CAMHS, but there have been difficulties recruiting staff with the right skills and experience so it hasn’t been possible to move forward with a start date.
NHS SOUTH YORKSHIRE ICB:
There are no local services specifically in relation to ARFID but due to the increase in presentations locally, we are working with local NHS providers to develop a service.
Sheffield Children's hospital says its Eating Disorder Assessment and Treatment Team (SEDATT) team do manage some young people in the Sheffield catchment area with ARFID, but there is currently no multi-disciplinary service to treat young people outside of Sheffield.
NHS HUMBER & NORTH YORKSHIRE ICB:
There are no services specifically commissioned for children and young people to diagnose and treat ARFID
NHS LINCOLNSHIRE ICB:
There are currently no local NHS services which diagnose and treat ARFID, and no services are being commissioned by the ICB. However, Lincolnshire Partnership NHS Foundation Trust are currently working to develop a business case outlining what a Children and Young People ARFID pathway would look like in Lincolnshire and may consider a pilot if funding is available