We are patients, survivors, carers, and campaigners, united by our painful journeys with eating disorders. We reach out to you with the raw truth of our lived experiences. Our lives, or those of our loved ones, hang in the balance, yet we find ourselves confronted with a health system that too often turns its back on us. We are writing to you because no one with an eating disorder should be dying or being told they cannot be helped. However, in 2023, we have seen a growing trend of people being denied treatment and told they are too complex, or not motivated enough to be helped. We have seen people being told they are untreatable and in some instances moving on to palliative care pathways. This is a new and worrying trend that seems to be increasingly normalised around the country, despite all good practice guidelines.

Social media is full of messages from people unable to get support: children as young as 10 stuck in general paediatric wards because there aren’t appropriate beds close to home; 20-year-olds who have been told they are not treatable as they are too complex; carers who have lost loved ones to eating disorders; and adults in their 30s, 40s, and 50s who are currently receiving palliative care or have had their treatment withdrawn based on length of illness. A 23-year-old woman's harrowing story epitomises this crisis. She was referred to the Court of Protection a year ago because her clinical teams considered her illness untreatable due to its length and severity. She is a young adult with a severe mental illness, whose death is preventable. She is now begging for treatment to survive but unable to access it. Would this be acceptable for any other mental illness?

Even though it is widely known that eating disorders are becoming more common and that they increase mortality risk, this national emergency is not being addressed. Despite their high prevalence, eating disorders are frequently stigmatised and viewed as a lifestyle choice, a phase that only affects white, underweight teenage girls who ultimately grow out of their illness. This myth may underlie the severe underfunding of adult eating disorder services. In fact, people of all ages, sizes, genders, and ethnicities are affected by eating disorders. This has been well documented in recent surveys by NHS Digital.

The guidance that was published on palliative care pathways by NHSE East of England for adults as young as 25 years old is alarming. It is insufficient to say that this document was retracted because we have evidence from the ground that these practices are spreading. The way the terminology is being used is highly concerning. Treatment withdrawal, whether referred to as a "treatment break" or "palliative care," results in the same outcome. One simply sounds less repulsive than the other.

People with eating disorders are not untreatable. However, the new NHSE guidance for adult eating disorders, which is currently being consulted on, mentions treatment withdrawal as a possible outcome when someone does not respond to the treatment that has been provided for them. This is discriminatory, and it would not be acceptable for any other health problems.

We appreciate that there is a lack of funding and issues in the workforce, but the NHS should be holding hope for people. People have the right to the best possible chance of recovery, which necessitates properly funded services.

This growing epidemic can only be reversed by investing in prevention, early intervention, timely, high-quality treatment without discrimination, and investment into research to find new and more effective treatments. But these cannot be at the expense of people who are already ill. Eating disorders can be life-threatening, but deaths are preventable regardless of the length or severity of the illness.

The PHSO raised the alarm in 2017 and repeated the call for urgent improvements to adult eating disorder services to help prevent avoidable deaths. There has been very little progress since. The NHS blames the government for a lack of funding, and the government blames the NHS for a lack of implementation.

Inpatient admissions have been steadily increasing across the age range, and due to a lack of capacity in the system, patients are often admitted to acute hospitals in a life-threatening situation. In the last year, there were 28000 hospital admissions across the age range. Current inpatient treatment results in poor outcomes and 40–50 percent relapse rates, and practices are outdated, lacking the integration of medical and psychological treatment. The safety and quality of treatment for this group need urgent attention.