Big Brother's Nikki Grahame died following a tragic life-long battle with anorexia.

She was just 38 and had been seeking treatment for her eating disorder, with friends launching a fundraising page to get her the help she needed.

Mental health campaigner and patient representative at the Royal College of Psychiatrists and NHS England, James Downs, bravely opened up about his own battle with an eating disorder as he paid tribute to Nikki, hailed the way she helped others, and outlined the changes that need to be made...

Nikki Grahame’s death sent ripples of pain across communities who have experienced eating disorders.

For my teenage self, struggling desperately with anorexia, Nikki represented how you could have a shining and fabulous personality – and love life – even if you had an eating disorder.

Nikki tragically died at the age of 38
Nikki tragically died at the age of 38

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 six 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.

James Downs bravely shared his own story
James Downs bravely shared his own story

The costs were huge, but I was lucky to survive.

The wider tragedy here is on a large scale.

And the impact of the pandemic has only made things harder for people with eating disorders and for services to keep up.

Lockdowns have shone a spotlight on pre-existing difficulties - as our worlds have become smaller, our relationship with food, body image and exercise becomes more prominent.

With so many things seeming out of control, from our health to our jobs, no wonder people like me with eating disorders have resorted to ways of coping that might compromise their recovery.

Combine this with difficulties people have had in accessing services and the increased demand for help and there has been a perfect storm for eating disorders to get worse.

This has to and can change.

My experience was not uncommon in the 2000’s and sadly it is not uncommon today.

Nikki battled anorexia from a young age
Nikki battled anorexia from a young age

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 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”. These things are true, but the cruelty that we must address is the system that denies people care until it is often too late.

This must - and can - change.

People like Nikki and myself experienced a cruel illness within a cruel system.

James says Nikki's death shows that changes need to be made
James says Nikki's death shows that changes need to be made

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 acted now.

We need to invest in services and the workforce, so that we don’t have to set such a high threshold for access to care; we need to expand training to make sure professionals across healthcare can detect, understand and support people of diverse backgrounds with a range of eating disorders.

And we need to invest in research to make sure we can understand why eating disorders occur and what treatment works for each individual.

People don’t die from eating disorders, they die from a lack of care when they need it.

Eating disorder deaths are preventable and that is the message of hope to take away here.

Now we need change to make sure that no more lights like Nikki’s go out too soon.

* If you’re worried about your own or someone else’s health, you can contact Beat, the UK’s eating disorder charity, 365 days a year on 0808 801 0677 or beateatingdisorders.org.uk