This blog is written by MQ Ambassador and eating disorder campaigner James Downs following the launch of the APPG report: The right to health: people with eating disorders are being failed in Westminster on Wednesday 23 January. (Pictured above are MQ ambassador and campaigner Hope Virgo, who led the report and Professor Gerome Breen of 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. However, they remain some of the most neglected.
For too long, those affected have been failed by an insufficient system that cannot meet their needs. As someone with lived experience of these failures, I know the devastating impact they can have on both individuals and families. 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 the child and adolescent mental health service, ideally placed for early intervention, which we know gives people the best chance of recovery. But the system I found myself in was ill-equipped to help me and didn’t recognize that eating difficulties could happen to men, too. As a result, it took more than six years before he was able to access specialist psychological treatment. By this stage, not only were my difficulties entrenched and more resistant to treatment, but I had also lived with years of desperately poor quality of life, a life I almost lost on so many occasions. This story is not uncommon, but action is still needed years later if we are to prevent others from sharing the same experiences as me today.
In the last decade, eating disorders have increased at an alarming rate. The Covid-19 pandemic amplified this trend, exacerbating an already broken system. Too many individuals are left waiting for attention or, worse, are rejected outright. While the quality of support you can access matters, it is also true that all too often there is no support available at all. In the case of eating disorders, I have seen from both sides of the patient/politics divide that the thresholds for accessing treatment are so high that even very evil people have little or no support from legal services. With severe anorexia, I was told I was “Too low to interact with treatment” and returning to services when I miraculously made the initial stages of recovery without support. Years later, with Bulimia, I was told I was “Too medically stable” and “Not underweight enough” Being seen as an outpatient setting, despite multiple hospital admissions for physical complications and suicide attempts during the period I was denied treatment.
Not being able to get medical care when you need it is not neutral, nor is being in treatment for an eating disorder a guarantee that it will help you, rather than harm you. Moving up to the totality of eating disorder care is the principle of “do no harm,” however, my experiences show that the systems we currently have in place to treat eating disorders have the potential for harm built in. It is not without harm to sit on a waiting list. There is no harm in being told directly or indirectly that your problems are not serious enough to qualify for treatment. It is not without harm to overlook eating disorder prevention and simply hope for the best. And there is no harm in ignoring the historical and contemporary suffering caused by failures in our eating disorder services in favor of lip service and reputational advocacy.
Eating disorders like mine are often described as ‘competitive’, but the truly problematic competitiveness in eating disorder services is where people are incentivized to become increasingly unwell in order to access care in the first place. The resources of many services are so stretched that support must be rationed, creating an arbitrary hierarchy of need based on poorly evidenced criteria that decide whose suffering is more urgent and warrants care than that of another.
One of the central problems is the persistent stigma surrounding eating disorders. Public perception often reduces them to a narrow stereotype, but 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, health 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.
