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Nikki Grahame’s death brings dangerous gaps in eating disorders treatment into plain sight

The news of Nikki Grahame’s death has shocked many of us. It has sent ripples of pain across communities who have experienced anorexia and other eating disorders themselves. I remember watching Nikki on Big Brother, with her legendary phrases and unique charisma, and thinking that there was hope. For my teenage self, struggling desperately with anorexia, Nikki represented how you could have a shining and fabulous personality – and you could love life – even if you had experienced an eating disorder.

Anorexia nearly cost me my life. As a teenager diagnosed at 15, I spiralled over the coming years into a cruel illness that stripped me bare. Countless visits to the emergency department to restore the electrolytes in my blood that kept my heart from stopping at any moment, endless sleepless nights for my parents who were offered little support. At one stage, doctors told me they weren’t sure they would be able to keep me alive, even with medical intervention.

Eventually, help came, but this was over 6 years after my diagnosis. During this time, I was told I was “too underweight” for treatment, and that I didn’t have the capacity to engage with therapy because I was so malnourished and emaciated. I had to drop out of school, then university, then work. The costs were huge, but I was lucky to survive. I averted personal tragedy.

But the wider tragedy here is on a large scale. My experience was not uncommon in the 2000’s, and sadly it is not uncommon today. Since then the problem has only grown, with increasing hospital admissions and referrals to specialist services seen year on year. For every person like Nikki who wasn’t able to get the help that she needed, there are many more right now who can’t get access to any support, or when they do it’s not good quality. There are many more families like Nikki’s who live with grief at the tragic loss of their loved ones.

Many people I have encountered through treatment for eating disorders have since died and they’re often very young. Always with amazing gifts, talents, and a determination to contribute to the world. But I refuse to believe that deaths like these or Nikki’s are to do with “the terrible nature of anorexia” or as a result of “anorexia being a cruel illness”. Yes, these things are true, but the cruelty that we must address is the system that denies people care until it is almost - or actually - too late.

This has to change and can change. People like Nikki and myself experienced a cruel illness within a cruel system. We might not be able to change the prevalence of eating disorders overnight, but we can improve the system that treats them.

In my work as a patient representative with the NHS and Royal College of Psychiatrists, I know that things could get better for people needing support for eating disorders if we took the following steps:

These things are not impossible - they just require different choices. We shouldn’t have had to wait for so many to have been lost so young to devastating illnesses within an equally devastating system. People don’t die from eating disorders, they die from a lack of care when they need it.

Eating disorders deaths are preventable, and that is the message of hope. Now we need the change to back it up and make sure that there are no more lights like Nikki’s that go out too soon.

Contributed by James Downs

James Downs is a writer, mental health campaigner and expert by experience in eating disorders. He holds various roles at the Royal College of Psychiatrists and NHS England aimed at improving support for those experiencing mental health problems and eating disorders, and for their carers. James also represents various UK mental health charities and is a yoga and barre teacher. He has written extensively about his own experiences - from textbook chapters to blog posts - with the hope that those who read his work find comfort, affirmation and hope. @jamesldowns on Twitter and Instagram