Time To #DumpTheScales For Eating Disorder Treatments

Cross party MP’s and lawmakers call on the government to improve services for eating disorders in a letter, sent to Secretary of State for Health and Social care MP Victoria Atkins.

The letter, which has been signed by 23 MP’s and a member of the House of Lords, raises concerns about the palliative care pathways being used for patients with severe eating disorders.

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

““The figures alone are not creating action. This is where we need every single person who cares about the disastrous impact of eating disorders. We must be the action.  People are being turned away from services, not able to get support and enough is enough. We need the government to act now.  The day was amazing, bringing together people who are affected by eating disorders to raise awareness, offer support. It was harrowing to hear so many stories, but I am hopeful that the march will have ignited a fight in many to keep pushing for change.” Hope Virgo, MQ Ambassador

Read the full letter here:

Dear Rt Hon Victoria Atkins MP,

We are writing to you to raise our concerns over the Severe Enduring Eating Disorder Pathway (SEED), the palliative care pathways for eating disorders. We are writing to you because no one with an eating disorder should be dying or being told they cannot be helped. However, since 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 being moved 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and adults in their 30s, 40s, and 50s who are currently receiving palliative care or have had their treatment withdrawn based on length of illness.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 increasingly common and that they bring an added 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 this or 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.

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

In the recent debate to mark Eating Disorders Awareness Week, we raised the issue of palliative care pathways, but the minister said it wasn’t happening. Whether someone is being put on to an official palliative care pathway, or having treatment withdrawn for being “too complex” or “unmotivated” or being put onto a treatment break, it is the same thing.

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

We urge you to:

1. Make a clear statement that palliative care is only appropriate if the person has a separate life-limiting illness and not for an eating disorder alone. Deaths from eating disorders are preventable.
2. Set up a national confidential inquiry into eating disorder deaths similar to the national confidential inquiry into suicide and homicide, which has been successful in facilitating learning from these tragedies and improving practice.
3. Bring together experts by experience and clinicians to develop the best treatments for those struggling with eating disorders,
4. Ring fence funding for eating disorder research and treatment, which has hitherto been neglected. These include funding to implement existing good practice guidelines, such as NICE and MEED, and accountability by ICBs.

Yours Sincerely