Hope Virgo: What needs to happen to stop people with eating disorders being failed by the healthcare system?

Summary

In this blog, Hope Virgo, author and Secretariat for the All Party Parliamentary Group (APPG) on Eating Disorders, examines the crisis that continues in eating disorder services in the UK and the devastating impact this is having on patients and their families. She highlights how failures in services lead to avoidable deaths. Hope shares the key recommendations from a new report by the APPG and calls for adequate funding and attention to ensure people with eating disorders receive the help they need to recover.

Content

Eating disorders are among the most serious and life-threatening mental illnesses but have been overlooked and underfunded for far too long. Because of this, eating disorders have one of the largest treatment gaps in modern healthcare. In the past decade, we have seen an alarming rise in eating disorders, a trend that only worsened during the Covid-19 pandemic.[1] What was already a struggling support system for people affected by eating disorders has collapsed under this pressure. Too many people are waiting for support from treatment services that have been grossly underfunded and neglected for many years. In addition, public perception of eating disorders is still dominated by narrow stereotypes—but eating disorders don't discriminate and affect people of all ages, genders and ethnic backgrounds.

Understanding the situation for people with eating disorders in the UK

Over the last six months, the All-Party Parliamentary Group (APPG) on Eating Disorders has been meeting with people affected by eating disorders, clinicians, researchers and campaigners to gain an accurate picture of what is going on in the UK. The stories we have heard are harrowing and eye-opening to the epidemic of eating disorders that our healthcare system faces. We have heard stories of people:

• being denied treatment for not being thin enough.
• spending nights in A&E being hydrated, only to be discharged out into the community with no follow-up plan or treatment package.
• people being discharged from inpatient and outpatient treatment at low BMIs. In some cases, this has resulted in organ failure, suicide or repeat admissions to A&E where people have been crying out for support, only to be blamed for their condition. 
• avoidable deaths.

These stories have added to the evidence seen in the pre-pandemic survey of adult community eating disorder services, which highlighted significant shortcomings in community services’ capacity to manage risk. Only around 40% of services provided complete medical monitoring and/or had good links with acute hospitals.[2] Unfortunately, as the severity of a patient's illness increases, the likelihood of them seeking and accepting help decreases significantly. This means that the inability of 50% of services to provide follow ups or assertive outreach to patients who do not engage further increases the risk of deterioration these patients in the community.

The statistics we have from the Office for National Statistics (ONS) show much lower mortality figures than we believe to be the case, which is likely due to inaccuracies in recording practices. For those with anorexia, deaths are often caused by physical complications such as malnutrition, gastrointestinal issues, metabolic disturbances, cardiovascular events or infections, and recorded as such. Type 1 diabetes with disordered eating (T1DE) significantly increases the risk of premature mortality. These risks can be reduced with improved services and targeted medical training. Several psychiatric conditions can occur alongside eating disorders, including substance misuse, personality disorders and self-harm. This further heightens the risk of a person dying, which is why we need integrated care to bridge gaps between eating disorder and other mental health services. International studies have shown that integrated, timely services can improve outcomes and prevent deaths.[3]

Zara had an eating disorder and tragically died from suicide. Zara’s mum, Debs, believes her daughter would still be alive if she had received the support she needed and asked for. 

“My beautiful daughter, Zara—intelligent, sassy, kind, and compassionate—took her own life on 22 September 2021 after struggling with an eating disorder for nearly 10 years. Zara was diagnosed with Anorexia Nervosa in May 2013 and was admitted to an Eating Disorder Unit almost immediately. Instead of being good news for her recovery, this is when the nightmare began. From May 2013 to June 2021, Zara endured 13 inpatient admissions across seven different units, including three years as a continuous inpatient—nearly two of which she spent without ever leaving one of the units or going outside. With each admission, her eating disorder and mental health deteriorated further. During this time, she was restrained daily, often by a minimum of six people holding her down. She received very little therapy, and instead, there was a culture of patient blaming and shaming. In the last two years of her life, Zara was crying out for help, but no one would listen. The Eating Disorder Unit discharged her completely, handing her over to the community mental health team. I spent nearly every day taking ligatures off her, lifting her down from her wardrobe when I found her near unconscious, and performing CPR when I found her in the shower. There was little to no support from our community psychiatrist; we were left to cope alone. No matter how much we pleaded for help, it was a constant battle, and we never received the support Zara so desperately needed. My beautiful daughter should never have died from this illness. There was a whole world out there for her, and she had so much to give. But ultimately, Zara felt like everyone had given up on her. She was only 24 when she died, but she was exhausted, and didn’t know any other way to keep going without support."

Zara's story is one of many similar stories that are unfolding for countless others across the country. Behind these tragedies are systemic failures, often overlooked and hidden behind a lack of national data, questionable legal decision-making and cost-saving agendas. 

New APPG report—The Right to health: people with eating disorders failed

The APPG on eating disorders has released its first report into the state of eating disorder services in the UK. It makes five recommendations for the Government, including the call for a confidential inquiry into all eating disorder deaths.

1. Development of a national strategy for eating disorders. This strategy will encompass adults and young people, with sufficient funding to reform all services. The goal is to provide timely, evidence-based treatment for every individual with an eating disorder. The national strategy will include:

   - mandatory eating disorder training for all healthcare workers (including GPs, dentists and nurses).
   - investment in a public health campaign to clarify messaging around obesity and eating disorders.
   - funding for the implementation and integration of evidence-based treatment practices, including collaboration between services.
   - mandatory health screening for high-risk groups.
   - training for carers.

2. Additional funding for eating disorder services. This funding should address the demand for both adult and children's services.
3. Confidential inquiry into all eating disorder deaths.
4. Increased research funding for eating disorders. The aim is to enhance treatment outcomes and ultimately discover a cure for eating disorders.
5. Non-executive director oversight for eating disorder services. This oversight and accountability should be implemented in all NHS Trusts and Health Boards in the UK.

James Downs, a Researcher and Campaigner who shared his own lived experience as part of the APPG evidence sessions, told us that, “Patient safety must be at the heart of reform. Transparency and accountability about the failures in eating disorder services are long overdue, and every NHS Trust and Health Board must include non-executive directors focused on eating disorder services to provide ongoing scrutiny and progress.”

With integrated, well-resourced, and evidence-based treatment, recovery is possible, even in the most severe cases and after many years of suffering. Despite this, coroners, families and communities continue to see too many lives needlessly lost. This should not be happening. Eating disorders are treatable illnesses. They are dangerous and life-threatening when untreated, undertreated or poorly treated. But this risk to life is preventable, and deaths from eating disorders are not inevitable. 

Suzanne Baker, Carer Representative at F.E.A.S.T., gave evidence for the APPG and said, “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.”

A confidential inquiry is urgently needed to identify modifiable factors that contribute to preventable deaths. We need to see targeted interventions, service improvements and enhanced professional training to address gaps in care delivery.

Our question for the Government and the NHS is this: Why in the face of crisis is so little being done to support those affected by eating disorders?

Join the conversation

• Do you have an eating disorder or care for someone who does? We'd like to hear about your experience of accessing services and support.
• Are you a healthcare professional working in eating disorder services? Share your reflections about how care and treatment can be improved and made accessible to all.

You can join the conversation by commenting below (you'll need to sign up to join the hub first) or get in touch with us directly by emailing [email protected]

References

1 NHS Benchmarking Network. Accessed 12 January 2025
2 Viljoen D, King E, Harris S et al., 'The alarms should no longer be ignored: Survey of the demand, capacity and provision of adult community eating disorder services in England and Scotland before COVID-19'. BJPsych Bull. 2023; 48(4):1-9
3 Castellini G, Caini S, Cassioli E et al, 'Mortality and care of eating disorders'. Acta Psychiatr Scand. 2023; 147(2): 122-133

Related reading

• In conversation with Hope Virgo: “The withdrawal of treatment from people with eating disorders is a national crisis that’s being ignored.”
• Your illness worsens – so care is cut off. This is the scandal playing out in eating disorder treatment (Guardian, 25 February 2024)
• The right to health: People with eating disorders are being failed (22 January 2025)

About the Author

Hope Virgo is an author and a multi award-winning international advocate for people with eating disorders. Hope helps young people and employers to deal with the rising tide of mental health issues and is a recognised media spokesperson, having appeared on BBC Newsnight, Victoria Derbyshire, Good Morning Britain, Sky News and BBC News. Hope is the founder of #DumpTheScales, which acts as the secretariat for the All Party Parliamentary Group (APPG) on Eating Disorders. #DumpTheScales organises an annual march for better treatment and support for people with eating disorders.