In conversation with Hope Virgo: “The withdrawal of treatment from people with eating disorders is a national crisis that’s being ignored.”

Summary

A growing number of patients with eating disorders are reporting having treatment withdrawn by services, often without notice and without their consent. We spoke to eating disorder campaigner Hope Virgo about how pressures on services, enduring stigma around eating disorders and dangerous new narratives are leading to the practice of treatment withdrawal. Hope explains how this is affecting vulnerable patients and highlights that as the number of people developing eating disorders increases, the risks to patient safety will only get worse.

About the Author

Hope Virgo is an author and a multi award-winning international advocate for people with eating disorders. Hope helps young people and employers to deal with the rising tide of mental health issues. She is also a recognised media spokesperson, having appeared on various platforms including BBC Newsnight, Victoria Derbyshire, Good Morning Britain, Sky News and BBC News. Hope is the founder of the #DumpTheScales campaign which put eating disorders on the Government's agenda and is the organiser of the annual Dump the Scales march for better treatment and support for people with eating disorders.

Questions & Answers

In 2022, an article published in a Royal College of Psychiatrists newsletter sparked controversy amongst people with eating disorders and those who work with and care for them. The author of the article, a consultant psychiatrist working for a community eating disorder service in the East of England, suggested “stepping back if there are no changes or if the patient’s behaviours are getting worse,” and that where patients had an illness lasting more than five years, treatment should be withdrawn.[1] The Royal College of Psychiatrists later published an article providing a counterargument to the piece,[1] but there are growing concerns that the views expressed in it are prevalent—and are having an impact on eating disorder treatment in the NHS.

Withdrawal of treatment for patients with eating disorders

According to Hope Virgo, a leading eating disorder campaigner, there are worrying signs that these views are not theoretical ideas, or practices isolated to one geographical area. She is concerned that this ideology is widespread and having a practical impact on the care and treatment received by people with eating disorders, right now. 

“NHS East of England published guidance on palliative care pathways for adults as young as 25 years old—that is alarming.” This guidance referred to people suffering from what is known as Severe and Enduring Eating Disorders (SEED) and suggested that patients could be discharged or placed on a palliative pathway if their doctor felt they weren’t responding to treatment.[2] “It isn’t enough to say that this document was retracted, because we have evidence from the ground that these practices are spreading. The terminology being used is highly concerning. Patients are frequently reporting having their treatment withdrawn, with professionals referring to this as a ‘treatment break’ or ‘palliative care’. But whatever term you use, it results in the same outcome—one simply sounds less repulsive than the other. We are now discussing concepts such as ‘terminal anorexia’, which give people with eating disorders no hope that they will ever recover.”

Several patients have shared their experiences of services in the East of England with Hope, and they report common themes of being told they are too dependent on therapy, that they don’t want to engage or that they have used up their allowance of treatment. One patient describes living with the “pressure and fear” of being told they have “one last chance to get better.” Several patients also described conversations with healthcare professionals in which these staff members expressed their worry that patients would die because of withdrawal of treatment.

Hope also believes that national policy is beginning to take on and include the idea of ‘untreatable’ eating disorders. “The new NHS England 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 clearly discriminatory.”

She tells me the story of a 23-year-old whose experience illustrates the consequences of treatment withdrawal.[3] “This young woman 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 is unable to access it. We must ask ourselves the question: Would this approach be acceptable for any other mental illness?”

Another concerning pattern that patients are reporting is that they are being discharged without their knowledge and without being accurately informed of the reasons. One patient who was being treated at an eating disorder service in the East of England was told verbally that her BMI made her unsuitable for treatment, while the discharge reason given in her medical record read, “not wanting to engage in eating disorder specific work.” The patient says this was not true, and that the service discharged her on several occasions despite her being “desperate for treatment.” The patient later made a good recovery at an inpatient unit in another part of the country. 

That clinicians can decide to withdraw treatment without the awareness of or consent from the patient is a serious patient safety issue. It is vital that patients are given clear and accurate information about their treatment, so that they can engage in shared decision making about next steps. Another patient described their confusion about what to expect next, saying “I think I’ve been discharged, but it hasn’t been very clear.”

Eating disorder services urgently need reform

Hope explains why she believes labelling patients ‘untreatable’ is becoming increasingly common in the NHS. As well as eating disorder services facing demand that hugely outstrips resources, inaccurate perceptions of eating disorders remain rife even amongst professionals. “Eating disorders are still massively stigmatised illnesses, often viewed as a lifestyle choice or a ‘phase’ someone goes through. Many people still have this misconception that they only impact white, middle-class underweight girls, and whilst these views are slowly changing, the stigma is still there.” 

“For decades we have had people turned away for not being thin enough. 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 combination of this stigma and decades of inadequate funding and research for eating disorders has created an environment where services are being cut off to those who need them the most.”

A call to action for the Government on eating disorder services

It is well known that eating disorders are becoming increasingly common[4][5] and carry an increased mortality risk.[6] Without decisive action, Hope fears that the problem will only get worse.

“It’s a national emergency that is not being addressed. My social media is full of messages from people who are 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. Adults in their 30s, 40s and 50s who are currently receiving palliative care or have had their treatment withdrawn based on length of illness.”

“At the moment we pretty much have a one-size-fits-all model. If a person isn’t responding to treatment, the service places the blame on the patient without looking at what else can be done. There are pockets of good practice such as the integrated cognitive behaviour treatment (I-CBTE) model of care that is being used in Oxford, but we are not seeing these models being rolled out across the country.”

Eating disorder campaigners are calling on the Government 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 Safety in Mental Health, 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. Ringfence funding for eating disorder research and treatment, which has historically been—and continues to be—neglected. These include funding to implement existing good practice guidelines such as NICE and Medical Emergencies in Eating Disorders (MEED) guidance, and accountability by ICBs.

Beyond this, Hope believes that there is work to do right across the NHS workforce. “We need to ensure that every single healthcare worker is trained in eating disorders—that they have a proper understanding of how to treat people and what treatment options are out there.” 

But for Hope, the biggest issue that needs tackling remains the stigma that stops eating disorders being seen as deserving of treatment. “With cancer we would try other avenues if treatment wasn’t working, so why aren’t we doing that with eating disorders? People with eating disorders who are not responding to treatment are not being difficult. We need to see what other treatments we can try.”

If you are a patient or carer who has been affected by treatment withdrawal or a healthcare professional who would like to share your  perspectives, we'd love to hear from you. If you prefer, we can share your story anonymously. You can comment below or email the hub team

Related reading

• People with eating disorders should not face stigma in the health system and barriers to accessing support
• ‘Terminal anorexia’: a lived experience perspective (3 July 2023)
• Your illness worsens – so care is cut off. This is the scandal playing out in eating disorder treatment (Guardian, 25 February 2024)
• Top picks: Ten resources on eating disorders

References

1 Faculty of Medical Psychotherapy Newsletter, Autumn/Winter 2022. Royal College of Psychiatrists, 27 October 2022

2 This document was retracted so we are unable to provide a reference link.

3 Eastham J. 'Anorexia patients may be given palliative care not life-prolonging treatment under new NHS guidance'. The Telegraph, 9 September 2023

4 Young people with eating disorders in England on the rise. Children's Commissioner, 1 August 2023

5 'Hospital admissions for eating disorders up more than 50 per cent since first lockdown'. The Telegraph, 23 February 2024

6 Ayton A, Ibrahim A, Downs J et al. From awareness to action: an urgent call to reduce mortality and improve outcomes in eating disorders. BJPsych, 18 October 2023