It's heartbreaking - My 3-year-old son from Knowsley hasn't eaten in two years and I'm desperate for help

Jess McCormick and her partner say they have been passed from ‘pillar-to-post’ as they try to find out what is happening with Ronnie and what support he can get.

They have been to their GP, Whiston Hospital’s paediatrics team, dieticians and Alder Hey, but have been unable to get a confirmed diagnosis.

Jess said: “Every day is a battle to keep the panic from overwhelming me. Watching your baby son suffer and not being able to get the right help is absolutely heartbreaking.”

According to his mum, Ronnie was feeding just like any other baby until he got to 18 months, but then he started rejecting food. She said: “The only thing Ronnie is able to take on is milk and that is the only thing he has digested for two years.”

Jess became more and more worried as time passed and said Ronnie was vomiting four times a day. This prompted her to visit the A&E department at Alder Hey hospital, but was reassured Ronnie’s relationship with food wasn’t uncommon for his age.

However, Jess said she knew something wasn’t right and described instances were she would try to feed Ronnie, but said: “He just appeared to be terrified of the food and wouldn’t eat it, wouldn’t touch it, didn’t want to be near it.”

Jess continued to take Ronnie to their GP and the A&E because he was constantly vomiting and constantly refusing food. The family’s concern really started to intensify when Ronnie’s stools became loose and he was in constant bowel pain.

Jess said: “I took him to Alder Hey once again and just broke down crying. A nurse came over and they could see the distress I was in. I showed them all the photos of Ronnie’s stools and his vomiting and said we were at our wit’s end.

“A short time later, we ended up getting a call from the paediatrics team at Whiston Hospital who said they thought Ronnie could be suffering from a condition called Avoidant/restrictive food intake disorder (ARFID).”

Like many parents, Jess didn’t know what ARFID was until she looked it up. Although she is very happy to explore the possibility of an ARFID diagnosis she still wants further tests conducted to ensure Ronnie’s situation is fully understood and he gets the support he needs.

She added: “We had absolutely no idea what that was, but we looked it up straight away.”

ARFID is classified as an eating disorder by the NHS, but is not caused by beliefs about weight or body shape. It is characterised by people avoiding certain foods and limiting how much they eat and – in some cases – persons may refuse to eat food all together.

The NHS said the possible reasons for people developing ARFID are varied and complex. They include negative feelings over the smell, taste or texture of certain foods, not feeling hungry or just a lack of interest in eating.

ARFID is a highly complex condition, but the LDRS understands treatment for ARFID is not included in the National Institute for Health and Care Excellence (NICE) guidelines for eating disorders. This means the availability of services varies across the UK.

Jess was told by the team at Whiston hospital that ARFID was a likely explanation for Ronnie’s food problem, but they were not able to make an official diagnosis. Nonetheless, the family were told that Alder Hey has a specialist ARFID team and that they could get Ronnie a diagnosis there.

Jess used the self-referral form of Alder Hey’s website, but was told later on her application had been declined. It was explained to Jess that the ARFID team could not approve her request because she lives in Knowsley and has a Knowsley GP.

The LDRS understands the specialist ARFID service at Alder Hey Children’s NHS Foundation Trust is currently only commissioned in Liverpool and Sefton, meaning only patients registered to a GP in those areas can be referred or make a self-referral.

So, in spite of Jess living only a five minute walk away from Alder Hey, the fact she lives in Knowsley and has a Knowsley-based GP, she is unable to get Ronnie the help he so desperately needs.

A spokesperson for NHS Cheshire and Merseyside said: “We’re sorry to hear about the difficulties Ronnie and his family have experienced while trying to access ARFID services.

“We recognise that there is limited access to specialist ARFID services across the region and the country. We’re currently reviewing how children and families in Cheshire and Merseyside can get the support they need, wherever they live, more easily.”

Meanwhile, Jess’ fight for Ronnie and her search for answers goes on. She is now calling on NHS Cheshire and Merseyside NHS TRust to further examine its commissioning and referrals policies so children like Ronnie can access the best possible help.