I don’t know Nikki Grahame. Nonetheless, her death on Friday has hit me very hard, as it has many of us who have suffered with eating disorders.

Anorexia is a cruel and devastating illness, not just for the sufferer but for those around them. It completely overwhelms your entire life. You don’t care about how much you are upsetting people who watch on helplessly as you slowly disappear. You don’t care about the statistics telling you how dangerous it is. Sure, other people die. But you won’t. You’re different. It won’t happen to you.

Access to eating disorder treatment in the UK is patchy at best and negligent at worst. Despite NICE guidelines stating that BMI should not be used to assess severity of an eating disorder or whether help will be offered, services up and down the country have their hands tied by a criminal lack of funding that has persisted for many, many years. Eating disorders are estimated to cost society over £15m per year, and it’s likely based on the huge surge in referrals since coronavirus hit that this has increased.

On average, people wait a year or more from the onset of symptoms to seek help. Waiting lists are very long even to reach assessment, and if fortunate enough to be offered treatment, the wait is often longer still. It does not take long for eating disorders to alter neural pathways and they can become entrenched very quickly, yet services are unable to act on this knowledge due to such a significant lack of resources.

One thing that is so insidious about anorexia (or any eating disorder for that matter), is that it convinces you that you’re not really that sick. There’s always just a little bit further to go. I’ll just lose another kg, then I’ll ask for help. Once I reach that BMI I’ll be ready for treatment. So to have those very feelings validated and reinforced by services saying that your BMI/symptoms don’t tick the right boxes is devastating. Many people turned away from services won’t ever become ‘sick enough’ for treatment, and are then either in a position where they recover alone (incredibly difficult), seek private support (not an option for most), or just function with an eating disorder forever, which they might not die from but will have their quality of live massively impacted. It shouldn’t have to be like this.

My experience with eating disorder services has been mixed. I had no access to specialists as a child so was treated by the generic CAMHS service in inpatient, day patient and outpatient until I turned 18. In adult services, which I’ve used on and off for 10 years, I have had varying luck. My first time, with a diagnosis of anorexia, I waited 14 months from assessment to treatment as due to my BMI not being significantly low, I was a routine case. I was offered CBT-E which was unsuccessful and I left halfway through, feeling utterly hopeless. The second time I waited around 5 months. I had psychodynamic psychotherapy which helped significantly and I left feeling much more hopeful. A few years later I returned and was then given a diagnosis of purging disorder. I was offered a group therapy which I could not commit to due to work so was discharged, only to become one of those people who functioned with an eating disorder for the next few years, unbeknown to the outside world. Two years ago, I asked for a referral back and was rejected without assessment based on my BMI not meeting criteria for anorexia. I persisted and was then offered an assessment, by which point due to my weight and rate of deterioration I was considered an urgent case and assigned a case manager only six weeks later. By that time I was too unwell for therapy, so did a day patient programme before starting CBT-E again, which this time was much more successful.

It’s been an absolute rollercoaster, and as helpful and amazing as my service are once treatment starts, they have on many occasions over the years reinforced to me that I am more deserving of treatment when my BMI is lower. Early intervention is so, so valuable and had a significant impact on rates of sustained recovery, but it just doesn’t exist. That is not the fault of services themselves, but a result of years of underfunding that force their hands to treat only the very sickest of people – most of whom would not have got so unwell had there been more support.

Every death from an eating disorder is a tragedy and I truly believe they are preventable. Anorexia is a treatable illness. It might take some people much longer than others, and many of us won’t reach full recovery, but that doesn’t mean that the alternative is death. There needs to be more support at both ends of the spectrum: for those at the onset of their illness, to those who have been severely and chronically unwell for many years. You need to be just the ‘right’ amount of sick for services. Too well, and you don’t meet criteria. Too ill, and you’re a lost cause. It is thought that over 1.25m people in the UK have a diagnosable eating disorder, yet there are less than 500 inpatient beds for adults nationally and day patient services are scarce. The resources available cannot possibly meet the needs of people who require that increased level of support.

Why do up to 20% of people with anorexia remain chronically unwell? Why is treatment not working? Eating disorders are incredibly complex illnesses and therapy is not one-size-fits-all, however research into effective treatment is minimal based on the percentage of funding eating disorders get from the pool of money given to mental health research and care (which is still pitiful). Evidence bases are often out of date despite knowing that there is a huge population of people not responding to what is currently on offer.

As long as the underfunding of services continues, people will needlessly die as a result of their eating disorder.

Something has to change.