Systematic Change Needed in Eating Disorder Treatment

This blog post is authored by MQ ambassador and dedicated eating disorders advocate James Downs, reflecting on the recently released APPG report titled: The Right to Health: People with Eating Disorders are Being Failed, presented at Westminster on January 23rd. Featured in the photo are MQ Ambassador and campaign leader Hope Virgo and Professor Gerome Breen from Kings College London, who made vital contributions to the report.

Understanding the Severity and Neglect of Eating Disorders as Life-Threatening Mental Illnesses

It is widely acknowledged that eating disorders rank among the most serious and potentially lethal mental health conditions. Despite their severity, they are often overlooked and inadequately addressed within our healthcare systems. For too long, individuals suffering from these disorders have encountered a system lacking the necessary funding and resources to adequately support their recovery journey. With personal experience of these systemic failures, I am acutely aware of the profound impact that neglect can have on both individuals and their families. It is imperative that we confront this ongoing crisis and advocate for the essential reforms needed to save lives and provide effective care.

As a teenager struggling with anorexia, I was already engaged with a child and adolescent mental health service—ideally positioned for early intervention, which is critical for optimal recovery outcomes. However, the system I encountered was inadequately prepared to support me, failing to recognize that eating disorders can affect individuals of all genders. Consequently, it took over six years before I could access the specialized psychological treatment necessary for my recovery. By that time, my struggles had become deeply entrenched and increasingly resistant to treatment, resulting in a prolonged period of exceptionally poor quality of life—a life that I nearly lost on several harrowing occasions. My experience is not unique, and urgent action is still needed to prevent others from enduring similar suffering today.

In recent years, the prevalence of eating disorders has surged alarmingly, a trend that was exacerbated by the COVID-19 pandemic, which revealed and intensified the flaws in an already strained system. Too many individuals find themselves waiting excessively for care, or worse, are completely turned away. While the quality of available support is crucial, far too often, the absence of any support is the harsh reality. From my perspective as both a patient and advocate, I have observed that the criteria for accessing treatment can be so stringent that even severely ill individuals are left without adequate assistance from statutory services. When I was experiencing severe anorexia, I was told I was “too underweight to engage with treatment” and instructed to return only after I had managed initial recovery stages on my own. Later, in my battle with bulimia, I was deemed “too medically stable” and “not underweight enough” to qualify for outpatient care, despite multiple hospital admissions for physical complications and suicide attempts during that time.

The inability to access healthcare when needed is a serious issue, and being in treatment for an eating disorder does not guarantee safety or improvement; in fact, it can sometimes lead to further harm. The foundational principle of ‘do no harm’ should govern all aspects of eating disorder care, yet my experiences reveal that our current treatment systems are often inherently detrimental. It is not without harm to be placed on a waiting list or to be told, directly or indirectly, that your issues are not severe enough to warrant treatment. Furthermore, neglecting the prevention of eating disorders and simply hoping for the best is a harmful approach. Ignoring the historical and ongoing suffering caused by inadequacies in our eating disorder services in favor of mere platitudes and protecting institutional reputation is unacceptable.

Eating disorders are frequently characterized as “competitive,” yet the real and troubling competition lies within the services themselves, where individuals feel pressured to deteriorate further in order to qualify for care. The resources of many treatment facilities are overly strained, resulting in the need to ration support. This creates an arbitrary hierarchy of need based on poorly substantiated criteria that determine whose suffering is deemed more urgent and deserving of attention than others’.

A significant obstacle in addressing eating disorders is the enduring stigma that surrounds them. Public perceptions often pigeonhole these disorders into a narrow stereotype; however, it is crucial to recognize that eating disorders can affect individuals who are not underweight and can impact people of all genders, ages, and ethnic backgrounds. Unfortunately, many healthcare professionals still lack adequate training, and available treatment options often fail to address the diverse experiences and co-occurring conditions that those with eating disorders frequently face.