This blog is written by MQ ambassador and eating disorders campaigner James Downs following the launch of the APPG report: The Right to Health: People with Eating Disorders are Being failed at Westminster on Wednesday the 23rd of January. (Pictured above, MQ Ambassador and campaigner Hope Virgo who led the report and Professor Gerome Breen from Kings College London who contributed to the report.)
It is well known that eating disorders are among the most serious and life-threatening mental illnesses. Yet they remain some of the most neglected.
For far too long, those affected have been failed by an underfunded system unable to meet their needs. As someone with lived experience of these failures, I know the devastating impact they can have on individuals and families alike. It is time to confront this crisis and demand the reforms desperately needed to save lives.
When I developed anorexia as a teenager, I was already in child and adolescent mental health service – ideally situated for early intervention, which we know gives individuals the best chance of recovering. But the system I found myself in was ill-equipped to help me and failed to recognise that eating difficulties could happen to males too. As a result, it was over six years before I was able to access specialist psychological treatment. By this stage, not only were my difficulties entrenched and more resistant to treatment, I’d also lived with years of desperately poor quality of life – a life I nearly lost on so many occasions. This story is not uncommon, but action is still needed years later if we are to prevent others sharing the same experiences as me today.
In the past decade, eating disorders have risen at an alarming rate. The COVID-19 pandemic amplified this trend, exacerbating an already broken system. Too many individuals are left waiting for care or, worse, are turned away entirely. Whilst the quality of support you can access matters, it’s also true that far too often no support is available at all. In the case of eating disorders, I’ve seen from both sides of the patient/policy divide that thresholds for accessing treatment are so high that even very unwell people are left with little to no support from statutory services. With severe anorexia, I was told I was “too underweight to engage with treatment” and to come back to services when I’d miraculously done the initial stages of recovery without support. Years later, with bulimia, I was told I was “too medically stable” and “not underweight enough” to be seen as an outpatient, despite multiple admissions to hospital for physical complications and suicide attempts during the period when I was denied treatment.
Not being able to receive healthcare when you need it is not a neutral thing, nor is being in treatment for an eating disorder a guarantee that you will be helped, rather than harmed. Underpinning the whole of eating disorder care is the principle of ‘doing no harm’, yet my experiences show that the systems we currently have for treating eating disorders has the potential for harm built-in. It’s not harm-free to sit on a waiting list. It’s not harm-free to be told directly or indirectly that your problems aren’t serious enough to qualify for treatment. It’s not harm-free to overlook the prevention of eating disorders and simply hope for the best. And it’s not harm-free to ignore the historic and contemporary suffering caused by failures in our eating disorder services in favour of lip-service and defending reputation.
Eating disorders like mine are often described as “competitive,” but the truly problematic competitiveness in eating disorder services is the one where people are incentivised to become increasingly unwell in order to access care in the first place. The resources of many services are so stretched that support has to be rationed, creating an arbitrary hierarchy of need based on poorly-evidenced criteria deciding whose suffering is more urgent and warranting attention than another’s.
One of the core issues is the persistent stigma surrounding eating disorders. Public perception often reduces them to a narrow stereotype, yet we know that eating disorders are largely experienced by people who are not underweight, and affect people of all genders, ages, and ethnic backgrounds. However, healthcare professionals still lack training, and treatment remains ill-equipped to address the diversity of experiences and co-occurring conditions that people with eating disorders often have.
I recall feeling invisible in a system that didn’t know how to help someone who didn’t fit the stereotype. Stigmatising narratives only exacerbate the knowledge and treatment gap that leaves countless individuals without the care they need.
Grappling with these challenges is no small task. In recent months, the All-Party Parliamentary Group (APPG) on Eating Disorders has created a roadmap for reforms that is rooted in the testimonies the APPG has heard in recent months from patients, families, researchers, and clinicians. The report, ‘The Right to Health: People with Eating Disorders are Being failed’ highlights children as young as four being diagnosed with avoidant/restrictive food intake disorder (ARFID) who are unable to access specialist treatment. In my work as an Expert by Experience, I routinely meet parents and other patients grappling with the anguish of poor services and preventable deaths, and each story only reinforces the urgent need for change. These failures are not isolated incidents but evidence of a system overwhelmed, underfunded, and broken.
(Left: James Downs speaking at the launch of the report at Westminster.)
Reform must begin with a comprehensive national strategy for eating disorders.
The APPG’s recommendations start with adequate funding to meet demand. This means not only reducing waiting times but also ensuring timely, evidence-based treatment for every individual. Mandatory training for all health workers – including GPs, nurses, and dentists – is essential to improve early detection and intervention. I cannot count the number of times I encountered healthcare professionals who lacked even a basic understanding of eating disorders, even in emergencies, leading to missed opportunities for care and my life being put at risk.
Another critical step is investing in an inclusive public health campaign. Current messaging often conflates obesity and eating disorders, and overlooks disorders other than anorexia, creating harmful narratives that reinforce stigma. We need campaigns that reflect the diverse realities of those affected.
Research must also be a priority.
Despite the severity of eating disorders, research funding remains shockingly low. This limits our understanding and hampers progress toward better treatments and improved outcomes for all patients. As someone who has seen the limitations of current treatments myself, I know how vital it is for clinicians and patients to have more options for individualised, effective interventions.
Patient safety must be at the heart of reform.
The APPG has called for a confidential inquiry into all eating disorder-related deaths to identify and address systemic failures. 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.
Ultimately, people with eating disorders, their families and supporters, and wider society cannot afford to ignore this crisis any longer. The need for reform is urgent. Despite the tragic consequences people live with today, there are a range of solutions that can be implemented, and the way forward towards a more positive future for people with eating disorders is clear. As someone who has lived through the consequences of a broken system, I urge the government to act. The time for excuses has passed. When every delay costs lives, the time for action is now.
Read the report
10 Facts about eating disorders
The post Lives on the line: Calls for systematic change in eating disorder treatment first appeared on MQ Mental Health Research.
