Time To #DumpTheScales For Eating Disorder Treatments

MPs and lawmakers from all parties are calling on the government to improve eating disorder services in a letter to Secretary of State for Health and Social Care Victoria Atkins.

The letter, which has been signed by 23 MPs and one member of the House of Lords, raises concerns about palliative care pathways being used for patients with serious eating disorders.

This letter also follows the recent #DumpTheScales march in London, organized by MQ ambassador and activist Hope Virgo (pictured above at the march in April 2024).

“Numbers alone do not generate action. This is where we need all the people who care about the disastrous impact of eating disorders. We must be the action. People are being turned away from services, they can’t get support and enough is enough. We need the government to act now. The day was incredible, bringing together people affected by eating disorders to raise awareness and offer support. It was heartbreaking to hear so many stories, but I am hopeful that the march has started a fight for many to continue pushing for change.” Hope Virgo, MQ ambassador

Read the full letter here:

Dear MP Victoria Atkins:

We are writing to express our concerns about the Severe and Enduring Eating Disorders (SEED) Pathway, palliative care pathways for eating disorders. We are writing to you because no one with an eating disorder should die or be told they can’t be helped. However, since 2023, we have seen a growing trend of people being denied treatment and being told they are too complex or not motivated enough to receive help. We have seen people being told they are not treatable and, in some cases, being moved to palliative care pathways. This is a new and worrying trend that appears to be becoming more normalized across the country, despite all best practice guidelines.

Social media is full of messages from people who cannot get support: children as young as 10 stuck in general pediatric wards because there are no suitable beds close to home; 20-year-olds who have been told they have no treatment because they are too complex; caregivers who have lost loved ones to eating disorders; and adults ages 30, 40, and 50 who are currently receiving palliative care or who have had treatment withdrawn due to the duration of the illness. The heartbreaking story of a 23-year-old woman sums up this crisis. She was referred to the Court of Protection a year ago because her clinical teams considered her illness untreatable due to the duration and severity of it. She is a young adult with a serious mental illness, whose death is preventable. She now begs for treatment to survive, but she cannot access it. Would this be acceptable for any other mental illness?

Although it is widely known that eating disorders are becoming more common and carry an increased risk of mortality, this national emergency is not being addressed. Despite their high prevalence, eating disorders are often stigmatized and seen as a lifestyle choice, a phase that only affects underweight white teenagers who eventually outgrow 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 carried out by NHS Digital.

Guidance published by NHSE East of England on palliative care pathways for adults as young as 25 is alarming. It is not enough to say this or to say that this document was retracted because we have evidence on the ground that these practices are spreading. The way the terminology is used is very worrying. Withdrawal of treatment, whether called “treatment discontinuation” or “palliative care,” produces the same result. One just sounds less repulsive than the other.

People with eating disorders are not untreatable. However, the new NHSE guidance for eating disorders in adults, which is currently being consulted on, mentions withdrawal of treatment as a possible outcome when someone does not respond to the treatment they have been given. This is discriminatory and would not be acceptable for any other health issue.

The SEED Pathway is an official pathway found in Nottinghamshire, Lincolnshire, Northamptonshire and the Black Country partnerships, but beyond this we are seeing more and more cases of people with eating disorders moving into palliative care.

In the recent Eating Disorders Awareness Week debate, we raised the issue of palliative care pathways, but the minister said that was not happening. Whether someone is placed on an official palliative care pathway, taken off treatment for being “too complex” or “unmotivated,” or placed on a treatment break is the same.

We need cross-party support for eating disorders, and for the NHS to work with the government and experts to identify solutions and best treatment practices for people affected by eating disorders.

We urge you to:

1. Make a clear statement that palliative care is only appropriate if the person has a life-limiting illness and not just for an eating disorder. Deaths from eating disorders can be prevented.
2. Establish a confidential national inquiry into eating disorder deaths similar to the confidential national inquiry into suicide and homicide, which has been successful in facilitating learning from these tragedies and improving practice.
3. Bring together experienced experts and doctors to develop the best treatments for those struggling with eating disorders.
4. Limited funding for research and treatment of eating disorders, which has been neglected until now. These include funding to implement existing good practice guidelines, such as NICE and MEED, and accountability by ICBs.

Yours sincerely