Over one and a quarter million people in the UK are living with an eating disorder. Yet, many of these people are being failed by a glaring and dangerous gap in the treatment landscape, becoming trapped in a cycle of waiting lists, hospitalisations, and relapses.

Inpatient hospitalisation for an eating disorder is most often a late stage and emergency care treatment that focuses on addressing the immediate physical symptoms rather than the underlying issues and trauma at the root of the disorder.

Treatment guidelines

In 2004, guidelines by the National Institute for Health and Care Excellence (NICE) recommended outpatient treatment for eating disorders in the first instance. These guidelines were updated in 2017 to stress the need for community-based treatment as soon as an eating disorder is suspected, as well as transition out of inpatient care as soon as patients are considered medically stable.

Regrettably, there has been little evolution in the treatment landscape since these guidelines were first published 15 years ago. The latest data suggests that inpatient admissions - and readmissions - for the disorder have been increasing throughout that period.

As someone who has specialised in eating disorders psychiatry for over 25 years, I believe that the treatment landscape for eating disorders must react rapidly to better meet the needs of individuals – and to do so it must focus on holistic, outpatient, and day patient treatment options that can be integrated into patients’ everyday lives, according to their needs.

Early intervention is key

The current treatment system predominantly focuses on those at more developed stages of an eating disorder who are most "at risk" because of their physical symptoms. A lack of understanding and options for people at an earlier stage of their illness has led to an ingrained rhetoric that people may only qualify for treatment if they are "thin enough" and their symptoms are life-threatening.  In fact, some eating disorder services exclude patients who are above a certain body mass index as "not being severe enough" for specialist services. This leaves many patients confused about how to get help. It is widely accepted that early intervention can prevent the patient developing a severe and enduring eating disorder, yet it is not always being offered.

It is very often a difficult and lengthy process to access treatment for those at earlier stages of an eating disorder’s development. When someone is considered not to be "ill enough" for residential - or even for any specialist - care, treatment is presently limited to primary care and non-specialist care providers. This approach is too often delayed by long waiting lists, meaning treatment is fragmented and insubstantial for those patients who require more contact.

Case study

There are numerous examples of individuals whose illnesses have sadly worsened as a result of not being able to access treatment at an early enough stage. One mother who shared her story found there were limited suitable treatment options available when her daughter started showing the signs of anorexia nervosa at the age of 16. She wasn’t “thin enough” for inpatient hospitalisation and was put on a six-month waiting list for general cognitive behavioural therapy. The ad-hoc therapy and GP services supporting her daughter were unspecialised and insufficient but she had nowhere else to turn for advice or support:

“It felt like we missed an opportunity to nip the illness in the bud at an early stage, when intervention can really make a difference. Instead, we wasted months waiting for unsuitable treatment, which allowed the behaviours to become ingrained and even harder to tackle. If we had been able to get my daughter help sooner, I think we would have prevented her illness getting as bad as it did.”

Guidelines by NICE and by the leading eating disorders charity Beat stress that early intervention in the treatment of eating disorders is crucial to recovery. Yet, a 2017 survey by Beat of 1,478 English people with eating difficulties found that on average, people spend 176 weeks waiting for eating disorder treatment, and for 27% of people, treatment did not begin for over three years after their symptoms emerged.

By this point, the disorder will likely have become enduring and far harder to treat, while the person's physical health may have seriously deteriorated to such dangerous levels that the only option is hospitalisation.

An alternative to unnecessary prolonged hospitalisation

Inpatient hospitalisation for an eating disorder is most often a late stage and emergency care treatment that focuses on addressing the immediate physical symptoms rather than the underlying issues and trauma at the root of the disorder.

It is a necessary option for those who are critically ill and require immediate stabilising treatment.

However, there is little evidence to suggest that longer-term hospitalisation, past this point, offers any benefits over an outpatient or day patient programme, and is often unnecessary for those who are no longer at clinical risk. Yet inpatient treatment can last up to six months or longer and is significantly more expensive.

With inpatient care often taking place at a location far away from the patient’s home, prolonged treatment can be distressing and disruptive to a patient’s life.  It can dissociate people from their family and social networks, leaving them unsupported and unable to effectively transition back into their everyday lives.

Additionally, many inpatient wards are known as “universities of bad behaviours” for the ways in which patients learn to falsify their weights, hide food, and avoid effective treatment, habits that are clearly counterproductive to sustained recovery.  In fact, under the current treatment landscape, relapse rates for anorexia and bulimia are worryingly high, in the range of 35-60%.

Disrupting the current landscape

One exciting prospect to fill this gap is the emergence of a new system of care that focuses on early intensive, multidisciplinary day treatment.

Orri, based in central London, is the UK’s first multidisciplinary intensive day clinic for eating disorders not linked to an inpatient service. Treatment takes place through a tailored and “stepped” programme structure, providing everything from full-day support, to evening-only and weekend programmes for those with daytime commitments such as work or college. This type of treatment, whilst popular and proven on the continent and in the US, is relatively rare in the UK.

Patients undergoing treatment at clinics such as Orri will receive a tailored programme of individualised, group and family therapy delivered by a multidisciplinary team consisting of psychiatrists, psychotherapists, psychologists, occupational therapists, and dieticians.

Treatment plans are flexible in intensity and duration. They can include body-based therapy such as yoga and meditation, individual dietary advice, individual psychiatry sessions, psychotherapy and psychological input, active care therapy and occupational therapy input (such as practical cooking lessons and sessions on eating out), and group sessions on everything from menu planning to sexual health and intimacy.

Treatment is designed to fit around a patient’s needs as they return to their lives without an eating disorder - preventing expensive and long-stay inpatient hospitalisation and the high likelihood of readmission.

The stepped care approach can also contribute to helping carers feel more empowered as they can take a more active role in the person's recovery, with education and peer support offered to address the significant impact that eating disorders can have on family dynamics.

This is a stark and much-needed alternative to hospitalisation.

The launch of clinics such as Orri signals an important shift on current provision for the early intervention and longer-term management of eating disorders.

Orri is currently applying to participate in clinical trials to determine the clinical and cost effectiveness of an intensive “stepping into day treatment” approach versus in patient treatment “as usual” for eating disorders.

It is hoped that the findings of such trials will support advice to government to facilitate scaling of the early intensive, multidisciplinary day treatment model across the NHS, potentially opening the door to large-scale, long-term and well-overdue disruption of the treatment landscape.

 

 

For more information about anorexia and where to seek support, see MHT's disorders hub