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.
