People with eating disorders should not face stigma in the health system and barriers to accessing support

Summary

People with eating disorders often find it difficult to get help and treatment from the health system because of pervasive stigma, misinformation and stereotypes around eating disorders. In this blog, Hope Virgo, an eating disorder survivor and mental health campaigner, looks at the barriers people face when they try to access support, and talks about her own experience of being told she was ‘not thin enough for support’. She calls for long-overdue action on funding, training and awareness of eating disorders within the NHS.

Content

When we talk about eating disorders, a lot of people will immediately think of a white, emaciated teenage girl. This stereotype, combined with high levels of stigma, is a huge contributing factor as to why so many people affected by eating disorders are unable to access support from the health system. When people face barriers to accessing eating disorder services, it prevents them from getting potentially life-saving help.

Hospital admissions for people with eating disorders have increased by 84% in the last five years. Eating disorders are not new illnesses, but what we know is that they have increased rapidly throughout the Covid-19 pandemic. The pandemic created huge amounts of uncertainty and isolation, and a perfect storm for the development of eating disorders, and for eating disorders to really thrive. With the high numbers of people struggling, we have an emergency on our hands and the importance of tackling the increase and the issues around patient safety is crucial. 

In 2017, the Parliamentary and Health Service Ombudsman (PHSO) report ‘Ignoring the alarms’ highlighted issues around patient safety following the death of five women from anorexia. The report made a number of recommendations around training and funding. But what we have seen is that whilst there have been more conversations, not much action has been taken. There has been limited progress in respect of the PHSO recommendation about the training of doctors and other medical professionals.

There have been some steps forward, such as the recent guidance published by the Royal College of Psychiatrists ‘Medical Emergencies in Eating Disorders’, but we have seen very limited progress in ensuring doctors are trained to recognise and take seriously the signs of eating disorders. One consultant told me that some regions of the country don't even have consultant-led care.

The stigma around eating disorders not only plasters across society and healthcare, but across the government, and is perhaps one of main reasons why eating disorder services have been massively underfunded for decades. The lack of funding and understanding around eating disorders creates multiple barriers that people affected by eating disorders are facing when they try to access services, such as:

• not be able to get treatment based on their sex or gender
• not being able to access treatment because their BMI is too low or too high
• not fitting in to narrow, specific guidelines for treatment
• the lack of beds available (for adults there are just 455 specialist beds in the UK for eating disorder treatment).

Added to these barriers is the fact that we have continued to normalise eating disorder culture as a society, and many people are able to function at a high level with an eating disorder. Often people are unable to see that anything is the matter, and their behaviours are even praised as healthy!

I have had first-hand experience of the barriers and stigma people face from the health system when seeking help and treatment. When I relapsed in 2016, I had been out of hospital for eight years and I was terrified of ending up in hospital again, of getting to that point where I would lose control. That relentless anorexic voice was nagging at me day in, day out.

After four months of battling with that voice in my head, I decided it was time I reached out for help. I referred myself and got an appointment at an Eating Disorder Unit in London only to be told, “I wasn’t thin enough for support.” I left the appointment not sure what to do; all I had wanted was someone to talk to, someone to take my relapse seriously and to give me some help. I felt like a fake, a hypocrite. 

The month that followed was a mess. I couldn’t shake that anorexic voice that was slowly destroying me again, making me feel suicidal, taking over my every waking moment. One evening I sat at the train station for hours and just wanted to give up on life altogether. I remember thinking about how much better life would be for everyone if I wasn’t here. Something stopped me ending my life that evening, and I had this realisation that if I wasn’t thin enough for treatment I would have to manage this on my own.

The fact is, my experience is far from unique. The stigma, lack of funding and issues around workforce are impacting people daily. We know the statistics but what we often forget is behind the stats are lives, loved ones…

It is time eating disorders were tackled as a matter of urgency and received the adequate funding they deserve, because no one should be dying of an eating disorder, or condemned to a life of illness, in 2022.

You can follow Hope on Twitter and Instagram.

About the Author

Hope Virgo is an Author and a multi award-winning international advocate for people with eating disorders. Hope helps young people and employers (including schools, hospitals and businesses) to deal with the rising tide of mental health issues. She is also a recognised media spokesperson, having appeared on various platforms including BBC Newsnight, Victoria Derbyshire, Good Morning Britain, Sky News and BBC News. Hope is the founder of the #DumpTheScales campaign which put eating disorders on the Government's agenda. The campaign has gone from strength to strength making change happen on a national scale.