Teesside woman backs calls for an urgent overhaul in eating disorder care
An All-Party Parliamentary Group is calling for a new national stategy
Last updated 1st May 2025
A woman from Teesside is backing calls for an urgent overhaul in eating disorder care - after a new report is highlighting "widespread neglect".
It comes as an All Party Parliamentary Group finds what it's calling "one of the largest treatment gaps in modern healthcare."
It's now urging for a funding injection into prevention, diagnosis and treatment outcomes.
Michaela Harris is from Middlesbrough and she has ARFID, an avoidant/restrictive food intake disorder and she said: "The ways in which we have to go about in order to even just get listen to before a diagnosis, it's disgusting. We have to pretty much be on our death beds before someone will sit back and be like 'yeah, I think there's a problem here. I think we'll investigate this.' It's very heartbreaking.
"When you have a whole family watching you deteriorate and there's nothing they can do for you, it's soul-destroying. It really is and something needs to change and fast.
"It's excruciating and when you're begging and begging for help and all you're being told, all I kept hearing at every appointment that I was going to near enough every week, was that I 'wasn't small enough', 'there was nothing they could do', 'they couldn't see anything wrong' with me and all they could do was a blood test. It makes you feel like such a lost cause.
"A lot more money needs to go into the research of ARFID and looking into a more suitable treatment for us. It's a lot harder because of the fact that ARFID is in every case so different, so there's not one set treatment that will work for ARFID.
"You've also got to take into consideration that a lot of us with ARFID, we also have other conditions alongside of it so for me, I have PTSD that was developed alongside of it, so they can't really focus just on ARFID and that makes it so much more difficult.
"Why don't we deserve the same as anybody else with any other different eating disorder? I'm not putting any other eating disorder down, I would never do that but if I had anorexia, bullimia or pretty much any other eating disorder, I would be so much more recognised and I would get so much more help and I just think that's so shocking.
"A lot more training needs to be given even for like community doctors. They need to know what ARFID is because nine times out of 10, they haven't heard of it and you go to someone like that and they'll not know or have even heard of what's wrong with you. That needs to change and drastically."
All Party Parliamentary Group on Eating Disorders Report Launch: The Right to Health: People with Eating Disorders being failed
Today (22nd January), the All-Party Parliamentary Group (APPG) on eating disorders will launch a report highlighting the widespread neglect within eating disorder services across the UK. They say eating disorders are among the most serious, potentially life-threatening and life-altering mental illnesses but have been overlooked and underfunded for far too long. Consequently, eating disorders represent one of the largest treatment gaps in modern healthcare.
Wera Hobhouse, Chair of the APPG on Eating Disorders, said: "I have campaigned in Parliament to improve Eating Disorders for 6 years and in that time Eating Disorder services have become much worse rather than better. This detailed report puts together not only what is wrong but gives a very sharp focus on what must change."
Hope Virgo, campaigner and Secretariat of the APPG, stated: “Over the last few years, the situation for those affected by eating disorders has worsened. People are being denied treatment for being ‘too thin,’ ‘too sick,’ ‘not sick enough,’ or are being labelled ‘untreatable,’ despite clear evidence that people with eating disorders can and do recover. The fact that individuals are being discharged with BMIs under 15 is absolutely unacceptable and a complete injustice. We are sending people home to die. The question we must ask is: why, in the face of overwhelming need, are we still ignoring this crisis?”
The APPG says in the past decade, there has been an alarming rise in eating disorders, a trend exacerbated by the COVID-19 pandemic. It added that what was already a fragile support system for those affected has now collapsed under immense pressure. Too many people are waiting for treatment, and too many are being failed. This crisis, however, predated the pandemic, and we must not use it as an excuse for continued inaction.
Richard Quigley MP said: "Every year we are encouraged to "do" something to support mental health. Eating disorders never quite make it onto the list. Sympathy is forthcoming, but action isn't. We now have the tools to help every person suffering an eating disorder, we now need the will to deliver that help. This government has committed to improving mental help support and this APPG will work to make sure eating disorders are supported too."
The public perception of eating disorders remains narrow, often reduced to a stereotype of a teenage, emaciated white female. While this group is affected, it represents only part of the reality.
Over the past six months, the APPG on Eating Disorders say they have met with patients, families, clinicians, and researchers who shared deeply personal and harrowing accounts of the failure of mental health services. Stories include children as young as four being diagnosed with avoidant/restrictive food intake disorder (ARFID) but unable to access specialist support, families losing loved ones due to systemic neglect, and professionals struggling to provide life-saving treatment in an underfunded and overwhelmed environment.
Key Recommendations:
1. National Strategy: Develop a comprehensive national strategy for eating disorders for both adults and young people, with adequate funding to meet demand. 2. Service Reform: Ensure all individuals with eating disorders can access timely, evidence-based treatment. 3. Confidential Enquiry: Establish a confidential enquiry into eating disorder-related deaths. 4. Research Investment: Allocate significant funding for research into eating disorders to improve prevention, diagnosis, and treatment outcomes. Suzanne Baker commented: “Anyone who has supported a loved one with an eating disorder knows that these are not choices but complex, biologically-based illnesses. Treatment must focus on full recovery and enabling individuals to live well. This requires timely access to acute physical and psychological care throughout the duration of illness, supported by adequately funded specialist services and pathways. Integrated, continuous care across community, day-patient, and inpatient services is essential. It is a national scandal that this basic treatment expectation is not being met, leading to preventable deaths. Recovery should be the goal for every patient—a goal that is entirely achievable with the right treatment.”
Freedom of Information For Children and Adult Eating Disorder Services
Following evidence that individuals with eating disorders are being discharged at dangerously low BMIs, the APPG say they submitted Freedom of Information (FOI) requests to hospital trusts across the country. This was first undertaken in 2023 and repeated in 2024, covering data from January to October. The findings are deeply alarming, revealing instances of patients discharged with BMIs as low as 13, often justified by claims that individuals "did not want to get well."
According to DSM-5 criteria, a BMI under 15 signifies extreme severity, while ICD-11 highlights that a BMI below 14 in anorexia nervosa is associated with severe underweight, high risk of physical complications, and substantially increased mortality. MEED states that a BMI below 13 indicates a high impending risk to life. Discharging patients at such low BMIs places them at grave risk, as evidenced by deaths from physical complications and suicide. These practices reflect a worrying pattern of neglect in some regions.
One of the most alarming things that they say they discovered via the FOI was that services where patients are discharged at a low BMI tend to be services led by teams that do not believe in ongoing treatment for long-term recovery for patients with long-standing illness. This is a significant area of controversy. Some experts have proposed the concept of severe and enduring eating disorder (SEED) and advocate for “quality of life” intervention instead of active treatment... However, empirical research shows that recovery rates improve over time and that recovery is possible for patients irrespective of duration or severity of the illness. People with lived experience therefore advocate for active treatment at any stage, in line with NICE and NHSE guidelines,.
Postcode Lottery in Eating Disorder Services
Their FOI requests were sent to all trusts across the UK, asking for the BMI of inpatients and community patients with eating disorders at the time of discharge. Only nine trusts were able to provide this data, as most do not record BMI at discharge in a central database.
The data they obtained shows significant regional disparities in discharge practices:
- In some areas, multiple patients with BMIs under 15 were discharged, including cases with BMIs as low as 11.
- A notable number of patients with BMIs of 15–20 were discharged from both inpatient and community settings, indicating inconsistencies in care thresholds.
These data expose a postcode lottery in the availability and quality of eating disorder services, with some regions exhibiting particularly high discharge rates at dangerously low BMIs. The alarming findings from this FOI exercise underscore the urgent need for national oversight and standardisation of eating disorder services.
To ensure patient safety and equitable access to care, it is vital that:
- Trusts are required to record BMI at discharge in a central database.
- Patients are not to be discharged under a BMI of 15
- Discharge decisions are guided by clinical need and the potential for long-term recovery, rather than resource constraints or philosophical biases within teams.
- National monitoring of standards to address the significant regional disparities in care.
The APPG say without urgent action, individuals with eating disorders will continue to face inconsistent and inadequate care, with devastating consequences for their health and wellbeing. Despite pockets of good practice across the UK such as FREED, ICBTE, Ellern Mede’s Autism ED Pathway, and Innovative Services such as the WaterLily Project, throughout our evidence gathering, dangerous discharges emerged as a recurring issue, highlighting systemic failures in accountability, inconsistent commissioning, inadequate training across services, and a glaring lack of support for both patients and carers, each contributing to the deepening crisis in eating disorder care.
For more information and support, visit BEAT - the UK's eating disorder charity.