Restrained, sedated and called a liar: ARFID patient's treatment after wrong diagnosis

By Rachel Dixon, ITV News Multimedia Producer

After being diagnosed with an eating disorder, Ellen Macpherson hoped she would get the treatment she needed to recover. Instead she was restrained, sedated, and called a liar.

When now-qualified Dr Macpherson drastically lost weight while studying medicine at St Andrews University, she was temporarily pulled from her course and diagnosed with anorexia, she tells ITV News.

But she did not have anorexia, she has ARFID, a disorder where people are simply not interested in food. Ms Macpherson says she finds the sensory aspects of eating and preparing food "repulsive".

ARFID (avoidant restrictive food intake disorder) was first recognised in 2013, and is often linked to autism.

But in 2024 there has been a "dramatic increase" in cases, according to eating disorder charity Beat.

Figures, assessed for Eating Disorders Awareness Week (26 February – 3 March 2024), found in 2018 Beat’s Helpline received 295 calls for support with ARFID, or 2% of total calls.

By 2023, this Beat received 2054 calls - or 10% of its total calls for the year.  

There's very few treatment centres in the UK specifically for ARFID and its left some people waiting years for diagnosis and help.

Unlike anorexia, it isn’t driven by feelings about weight and shape.

Instead it revolves around fear about eating due to distressing experiences with food, or lack of interest or sensory issues around the texture or taste of certain foods.

Due to this key difference, Ms Macpherson left her six month stay in The Priory at Cheadle Royal Hospital in Manchester, where she was wrongly treated for anorexia, feeling her "self-confidence, self-worth, and psychological wellbeing post admission was much worse than before I went in".

She told ITV News: "There was a lot of miscommunication so they were getting really frustrated and angry with me and then I was panicking.

"It just escalated the situation, into ending up with being sedated and restrained.

"I wasn't in a place where people would've trusted my judgment at all. If I had decided, this is the reason why I'm scared to have this, and they would not have believed me for a second. I would've been able to tell that and become really, really distressed. I realized pretty quickly not to say the truth."

"The interpersonal dynamic there is extremely disruptive to you as an individual because, being in the care of people who you can tell think you're a liar is horrific.

"It does something to you psychologically that I can't describe. '

"You start to think, am I a liar? Am I the person they say I am? Am I a bad person?"

The Priory told ITV News that ARFID, is "complex and heterogeneous", meaning there are a wide range of possible underlying causes and physical symptoms.

As such, every patient is assessed and treated based on their own individual needs, by a multi-disciplinary team, they said.

The Priory also added it used sedation and nasogastric feeding under the Mental Health Act, when people with eating disorders become very physically unwell due to severe weight loss and can be at risk of dying.

If you've been impacted by this story please get in contact via yourstory@itv.com.

For help with ARFID, or any eating disorders contact Beat here.

Ms Macpherson was previously wrongly diagnosed with anorexia aged in 2012, over 12-years-later she was diagnosed with Autism and this led to her being diagnosed with ARFID.

Despite this, except from medical interventions where she was tube fed to stop her dying from malnutrition, Ms Macpherson has never been given psychological help with her disorder.

She believes if she was diagnosed as a toddler, and if there were more specialists, she would not be in this situation.

Of the estimated 55 NHS Trusts or Community Interest Companies which provide eating disorder services for adults, 38 NHS providers (78%) were unclear as to whether any of them would be able to support ARFID patients, according to eating disorder charity Beat.  

For children and young people, 44 (80%) were unclear on their websites as to whether any of them provide or support treatment for patients with ARFID.

The lack of services contributed to the death of seven-year-old son Alfie, from Stockport, died suddenly after a severely restricted diet left him malnourished in December 17, 2021.

His mother Lucy Morrison's said she tried to get help countless times but Arfid was only diagnosed after his death.

Stockport NHS Foundation Trust has since apologised and made changes.

An NHS spokesperson said: “During the pandemic, referrals for eating disorders for children increased by almost 50% and the NHS is clear that improving care for people with an eating disorder including ARFID is vital, with investment, targeted support and training helping to develop community eating disorder teams in all areas in England.    

“Since 2016, investment in children and young people's community eating disorder services has risen every year, with an extra £54 million per year since last year and extra funding continues to enhance the capacity of community eating disorder teams, including the needs of those with ARFID, across the country.”  

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