Children with eating disorders: a patient safety focus (by Hope Virgo)

Summary

Trigger warning: This blog contains themes that may be triggering for some people. 

Hope Virgo is an author, a multi award winning mental health campaigner, and secretariat for the All-Party Parliamentary Group (APPG) for eating disorders. In this blog, she explores the patient safety issues affecting children with eating disorders and their families.

Hope highlights how lack of investment and understanding is leading to avoidable harm and shares five key actions for change. 

This blog is part of our World Patient Safety Day 2025 (WPSD 25) series - Safe care for every newborn and every child.

Content

My campaigning work was born out of wanting to fight the injustices that so many people affected by eating disorders go through.

Having lived with anorexia from the age of 12-17 before being admitted to a mental health hospital where I began my journey to recovery, I know first-hand just how awful eating disorders are. I have spent huge amounts of life feeling frustrated by how many people get turned away from services for not having that “particular stereotypical look” and with how much neglect is taking place in treatment across the UK. 

Patient safety concerns

Often people still think someone with an eating disorder will be underweight or have been labelled with anorexia. Eating disorders are so much more than that. During my campaign work and the APPG evidence sessions, I’ve met hundreds of people who have been denied treatment for not looking that way.

We have spoken to parents who have children with avoidant restrictive food intake disorder (ARFID), who have not been able to access treatment and support. The reality is, there is a postcode lottery and a lot of children and their families aren’t being given the best chance of life. 

Many carers also tell me how often their concerns are dismissed as silly worries. This cultural dismissiveness across eating disorder services and the lack of training and funding, is leading  to huge issues for patient safety. It is causing people to die.

It can feel so hard to speak up when support is so limited, but as a parent or carer, learning to push for support is crucial. I’d also recommend looking at the amazing resources for carers produced by the organisation FEAST.

Stigma, misunderstanding and dangerous narratives

Eating disorders are an illness that is massively stigmatised and misunderstood.

Contrary to many assumptions, people with an eating disorder:

• are not making a lifestyle choice
• are not being difficult 
• are not all white females.

Eating disorders can impact people of any age, size, gender or race.

Stigma and misunderstanding leads to so many people being denied treatment for an eating disorder. 

Marked as ‘untreatable’

One narrative that we have seen in the last two years is an increasing amount of people with eating disorders being marked as untreatable, too complex and in some cases as terminal and moved to palliative care. This dangerous narrative is causing many people to be discharged from services too soon and given inadequate care. If they are discharged prematurely and still have a malnourished brain they are not being given the chance for it to fully rewire - leading them at high risk of relapse.

Time for change

For too long eating disorders have been stigmatised and underfunded, with very little specific staff training. For children’s services, whilst there has been some investment, it has been very limited. 

Five key changes to support patient safety

The APPG published a report in January 2025 calling on the government for five key things:

1. Develop a national strategy for eating disorders.
2. Provide additional funding for eating disorder services. This funding should address the demand for both adult and children’s services.
3. Launch a confidential inquiry into all eating disorder deaths.
4. Increase research funding for eating disorders: The aim is to enhance treatment outcomes and ultimately discover a cure for eating disorders.
5. Ensure non-executive director oversight for adult and children's eating disorder services. This oversight and accountability should be implemented in all NHS Trusts and Health Boards in the UK.

Recovery

When you have an eating disorder, it completely consumes you. It takes over every area of your life. And it consumes your family life too. The research shows that people can and do recover at any age, severity of illness or length of illness. So why are we allowing so many to remain stuck living with an eating disorder and denying them the care they need?

Over the last few years. we have seen pockets of good practice in services from the development of integrated enhanced cognitive behavioural (I-CBTE) therapy, to areas where GPs have quickly referred patients or supported families to recover. With the right support and treatment in place for people with eating disorders we will not only save lives but also money. Through early intervention we can prevent hospital admissions and prevent begin becoming more malnourished thus leading to quicker recovery times.

Final thoughts

Eating disorders are a serious mental health issue. They have the highest mortality rate of any other psychiatric illness yet are often hidden in plain sight. It doesn’t have to be this way. People with eating disorders can and do make full recoveries, we just need to do better to enable this to happen.

This growing epidemic can only be reversed by investing into prevention, early intervention, and timely, high-quality treatment. Access to services needs to be free from discriminating criteria and bias. The current inpatient treatment approach results in poor outcomes and 40-50 percent relapse rates.

Without a cultural shift and a complete reformation of services nothing is going to change. Campaigners, clinicians and others need to work together to make this change happen.

March with us

On 21 June, 2025, we’ll be taking to the streets of London for the third consecutive year to march for those we love, for those we have lost, and for the future generations affected by eating disorders. This march is not just a walk — it’s a statement to demand better services and put an end to the neglect faced by those struggling with eating disorders across the UK. Find out how you can join.

About the Author

Hope Virgo is secretariat for the All Party Parliamentary Group (APPG) for eating disorders, an author, and a multi award winning mental health campaigner. She founded the #DumpTheScales campaign focused on making sure every single person who needs it gets access to treatment for an eating disorder.