Mother whose son barely eats urges NHS to act on eating disorder Arfid before another child dies
A mother from Worcestershire who believes her four-year-old son has the eating disorder, Arfid, says she will do all she can to get treatment after being told none exists in the county.
It comes as ITV news has learned that despite a recent death, there are no national NHS guidelines on how to treat Arfid which has been a recognised condition for more than 10 years.
James Cartwright-Kilcline barely eats. He survives on five 'safe' foods of which he will eat a couple a day. He won't tolerate water.
He has autism and the condiiton is more common among autistic children.
His mum Claire Cartwright-Clamp from Stourport-on-Severn suspects Arfid but says she was passed from one health professional to another when she sought help.
She said:"James goes to a specialist nursery now and they too have concerns that he has Arfid as they recognise the signs.
"I have gone back to my GP and I've gone to various medical professionals and there isn't any help, I'm told, to either refer or diagnose ARFID in Worcestershire. I have asked if James can be transferred outside the county but that doesn't also seem to be possible. So at the moment we're supposed to wait until a service might appear."
She says she's had many other parents contact her saying they are in a similar situation.
"I think parents have asked for help, and when they're told the service isn't there, they think there's nothing they can do.
"They just feel like a door has been shut in their face. And I would like to see the door opened. And I would like to see these families that are worried about their children have the care provided because we don't want another death."
What is Arfid?
Arfid stands for Avoidant Restrictive Food Intake Disorder. Signs can include:
Hypersensitivity to taste, texture, smell, appearance
Lack of interest in food
Refusal of an entire food group and fear of eating in case of choking or vomiting
It isn't picky eating or driven by body image or a desire to lose weight.
Lucy Morrison's seven-year-old son Alfie from Stockport in the North West, died suddenly after a severely restricted diet left him malnourished. She sought help countless times but Arfid was only diagnosed after his death.
Stockport NHS Foundation NHS Trust has since apologised and made changes.
His inquest found there was a lack of communication and professional curiosity about the nutritional value of his diet. For years Lucy had blamed herself.
Now the two mothers have met and Lucy is helping Claire get the help she needs.
Claire said:'When I read about Alfie's story and all he and Lucy went through it made my heart stop. It shouldn't be happening and I'll be damned if I let it happen again."
Lucy said speaking to a mother like Claire had helped her feel less alone.
"Firstly I feel heard because I realise I'm not alone. And I'm really hoping that Alfie's story and what he had to go through every day can now help James's story. And he's just one little boy. There's so many more."
A spokesperson for NHS Herefordshire and Worcestershire Integrated Care Board (ICB) said: “While we currently fund specialist services for ARFID cases, it's important to acknowledge the limited availability of such providers nationwide.
"However, the ICB recognises the importance of accessibility and local care, and is reviewing the local pathway to ensure more timely intervention and support for affected individuals and their families."
NHS England also told us it that its eating disorder guidance for children and young people is being updated to include Arfid and is due to be published later this year.
Meanwhile Birmingham based charity The Feeding Trust is doing its own work to raise awareness and support children with eating problems across the UK.
Natalie Morris, the CEO and founder said:"We're looking at developing something we call our Eating Learning Curriculum, which supports educational settings to help children who've got feeding difficulties within their settings. The idea is to really develop some of those skills that they need to help them to learn to eat and to develop a healthier relationship with food.
"Globally up to 25% of children at any point in their life will experience some problem with with their feeding.
"About 10% of those will actually go on to have a really quite significant difficulty with their feeding
"That rate is even higher for children who've got medical learning or developmental differences."
For help and advice on Arfid go to Beat, the Eating Disorder Charity or Arfid Awareness UK