Professional Developments for Disordered Eating

Experts in autism and experts in eating disorders have come together and identified that the needs of young people with an eating disorder and autism were not always being best met. By listening to those with lived experience they understood that reasonable adjustments were not being adequately implemented to support service access, service experience and care quality for neurodivergent people across our region. It became clear that the evidence base for eating disorder treatments was neuronormative and didn’t serve everyone equally.

The CYP Provider Collaborative established a project team, bringing autism and ED pathway clinical expertise together, alongside those with lived experience, to challenge and raise awareness of inequalities.

The Statement of Commitment: Delivering neurodivergent affirming care in eating disorder treatment for children and young people is our clear statement of intent. Our statement of ambition from it is unwavering: To embed these essential values as a way of being – for all clinicians and within all teams for all our service users.

We’ve also been working on further work products, developments and shared learning. This includes a series of Neurodivergent Affirming Care examples for across the Eating Disorders Pathway:
5 Clinical Practice Reflections and Suggestions from those with Lived Experience

In partnership with other regional and national services, the NENC ARFID project developed Emergency re-feeding plans for sensory restrictive eating disorder admissions to acute paediatric wards to guide care and treatment for sensory and neurodivergent reasonable adjustments. There is also an additional patient-facing supplementary sensory admissions resource available to service users to promote self-efficacy and autonomy over their health and treatment. These documents have been very well received nationally and have contributed to positive improvements in patient care experience.

The neurodivergent affirming project group, together with national partners, is currently in the process of expanding upon this work. Together, these partners are developing a new resource to support acute admissions for those who have both anorexia nervosa and autism/sensory needs. This document will be shared here when completed. The current aim for this work is to share by summer 2025.

Eating Disorders and Neurodivergence: a stepped care approach is an excellent publication to develop a further comprehensive understanding of eating disorders and neurodivergence.

The PEACE Pathway for Eating disorders and Autism developed from Clinical Experience is also an excellent source of information, resources and support for professionals and patients alike.

The National Centre for Autism and Mental Health also has a range of courses for healthcare professionals ranging from short courses to PG-Cert and PG-Dip higher education levels.

The broad spectrum of disordered eating presentations can include disordered eating secondary to life events (such as bereavement), neurodivergent eating difference, extreme dieting, eating addiction, and more. Restricted Intake Self Harm (known as RISH) aims to describe the specific subset of patients who present with restricted intake (both foods and fluids) as a method of self-harm. It is not diagnostic and is an emerging formulation-based understanding of a specific sub-set of the disordered eating presentations. A formulation is an explanation or hypothesis of how an individual comes to present with certain behavioural characteristics.

The evidence base for RISH is new and evolving. Contributing to this field of understanding is an all-age national Consensus Conference piece of work conducted by the NENC CYP Provider Collaborative with expert national partners. This work represents multiprofessional clinical consensus and current best practice. The Clinical Working Group for this piece included 13 authors across 6 multiprofessional disciplines, and 7 contributors across 5 disciplines, together with those with lived experience. It is the product of an 22-month project including 7 virtual conferences, tangent specialist working groups and multiple drafts and reviews leading to a 30-page document titled: Practice considerations for the management of RISH across care settings and age.

Why does RISH matter?
As the document describes, RISH as a terminology came about following research by Fenton and Morris into patient experience. This research found that individuals who identified with RISH felt that the existing terminologies did not adequately describe their difficulties or fit their experiences. They reported experiencing existing diagnostic and descriptive categories as being belittling, dismissive, broad or confusing. Following publication of the RISH Practice Considerations, the Project Lead received feedback from an individual with lived experience. What she describes in her email about the impact of the document perfectly encapsulates why work into understanding RISH better is so important. With her consent, her experience and feedback is shared below:

“… just wanted to thank you, and the team, who put together the RISH document earlier this year.

RISH was referenced by a parent in a group I am a part of, which focuses on support for individuals and families managing eating disorders with a dual diagnosis of autism. Being unfamiliar with the term I turned to google and found the document.

I am an adult, living in New Zealand, who has experienced significant sexual trauma. Alongside PTSD I developed a restrictive eating disorder which has been labeled as Atypical Anorexia, and ARFID (and a few other unofficial diagnosis/summarized observations) …none of which have ever felt ‘right’, and in treatment I have been acutely aware of the differences in experience between myself and my peers with more typical presentations (preferred foods, and the tendency of peers with anorexia to hide food/lie about intake being two of the stand out things). While the labels have followed me, I have said for some time I have a restrictive eating disorder, rooted primarily in communication. I’ve been fortunate to have some great support (alongside some not so great support), and over time, we have navigated our way with adjustments and accommodations to get me to where I am now – maintaining adequate nutrition, all be it in a less than typical way, and with a shift in focus to using alternative means of communication (with greater insight into the impact that restriction has on my functioning and therefore working hard not to go down that slippery slope).

It was so validating to read my experience described in the document…to understand that my response isn’t unique, and to see that our sometimes (an) atypical approach to things, which caused a few raised eyebrows, and at times resistance, is in fact exactly what you are recommending.

How awesome to have a ‘guide book’…and perhaps in time, a recognized alternative diagnosis. I have shared with some of the people who have supported me over the years and they are really excited that there has been some progression in this area… great to have you leading the way!

I hope not to need it, but (I) have filed the document away and if requiring further support down the track and will be sure to share, to help ensure access to appropriate support. Many Thanks to the team who worked on this”.

The London Transformation Partners document is an excellent clinical consensus guidance providing management advice across the range of disordered eating presentations.

Additionally, the British Dietetic Association (BDA) Mental Health Specialist Group has produced an excellent toolkit for dietitians working with Emotionally Unstable Personality Disorders

Understanding presentation differences between Anorexia, RISH, Autism, and Avoidant Restrictive Food Intake Disorder can feel difficult and confusing. The Primary Care Children and Young People’s (CYP) Eating Disorders (ED) Decision Tree has been developed by North East and Yorkshire Regional Mental Health Team, in collaboration with our Eating Disorder and Primary Care Clinical Leads, and the NENC CYP Provider Collaborative. The tool explores what steps to take in primary care when a young person presents with restricted oral intake and provides signposting information. The tool includes a blank page at the end for recording local service details (text can be added to PDF documents using a PDF editor).

Pervasive Arousal Withdrawal Syndrome (PAWS) was formally understood as Pervasive Refusal Syndrome (PRS), and much of the available literature uses this term. However, as ‘pervasive refusal’ implies behavioural controllability it is now commonly understood and referred to as PAWS. This is experienced as less blaming and therefore more clinically helpful.

PAWS is a syndrome of extreme severity, to such an extent that it is life threatening. Although not a diagnostic classification, PAWS is a complex condition that leads to social withdrawal, with inability or worsening function in various domains including (but not limited to) eating, drinking, mobility or communication. The affected individual regresses and is unable to self-care, and quite characteristically will resist rehabilitation or remain entirely passive. Response to praise may be atypical, which further impacts their recovery journey. Affected individuals are involuntarily withdrawn but remain fully conscious. They may sometimes sleep in the day as well as at night but are rousable. Even for those who are not mute, it is difficult to gauge their cognitions. On recovery, they may struggle to clearly recall how they felt or what they were thinking during this time. In typical cases, they may show distress when attempts towards rehabilitation are made.

The NENC CYP Provider Collaborative recognised the complexities of supporting those with PAWS and noted that support for these individuals was historically required from one of a few specialist treatment centres located across the UK. This invariably meant that individuals were placed at least 2.5 hours (each way) from their home with a typical admission duration of >18 months. Recognising this and observing that there was a poor understanding of PAWS across clinical settings, we embarked upon this project to develop insights for service improvement.

We sought to draw together the current research literature and combine it together with expertise from the specialist centres, wider regional and international experts and with broad lived experience perspectives (from the UK, USA, France and New Zealand). The subsequent 2 year multi-professional project produced a robust 29-page all-age document which seeks to:

• Improve the clinical understanding of PAWS
• Share findings of helpful best practice in the treatment of PAWS for consideration and application across a range of care settings.

 
You can view the final document here: Pervasive Arousal Withdrawal Syndrome (PAWS): practice considerations for the management of PAWS

Since embarking on this learning, the NENC Provider Collaborative has successfully offered local inpatient treatment for an individual with PAWS. This is significant because it represents a shorter treatment duration than is typically experienced by those with PAWS (less than 11 months compared with >18 months) and it was possible to deliver this care close to home.

Both our RISH and PAWS documents include advice relating to reducing restrictive practice interventions relative to the disorder. These have authorship support from Sarah Fuller, Advanced Specialist Dietitian and Research Fellow with Imperial College London who has been pivotal in advancing the understanding of restrictive practice research in the UK.

Further information and practical advice for clinicians working with children and young people is available on this webpage: Paediatric restrictive practices and nasogastric feeding guidance

With these papers offering further practical advice and application:

• Nasogastric tube feeding under restraint: practical guidance for children’s nurses
• Nasogastric tube feeding under physical restraint: understanding the effects on parents and how to support them

The NENC CYP Provider Collaborative is a close partner with the national eating disorders charity, Beat and fully supports their recent report “there’s no place like home” which strongly aligns to the national and regional vision for keeping care closer to home.

In further support of this, the NENC CYP Provider Collaborative is an active member of Beat’s 2 year campaign advisory group which aims to guide their campaign to have intensive community treatment and/or day treatment available to all who need it, at all ages, in all parts of the UK.

The Project Lead (Clare Ellison) also wrote this article about an example of CEDS in-reach working and the resultant impact on reducing tier 4 admission stays for children and young people with an eating disorder between 2019 and 2022 in North Cumbria.

Eating difficulties, eating distress and problematic school-food culture are often cited as challenges for academic professionals, school children and their carers. These issues include those with diagnosable eating disorders, but also encompass a significant number other young people struggling with eating related difficulties.

The School Food Resource has been written by the North East and Yorkshire (NEY) Regional Mental Health Team, in consultation with eating disorder champions within the NEY Region, as well as with specialists in eating disorders, education, and mental health. The aim of the resource is to support staff in primary and secondary schools to provide a healthy and safe environment for all students to eat food at school. It does not seek to replace existing national policy or guidance, but to provide a useful regional resource to support schools.

It is of primary importance that pupils aim to eat regular nourishing food across the school day, to fuel their bodies and minds properly to remain healthy and maximise learning potential. The Eating Disorder Champions have reported numerous individual instances of young people who do not eat at school. This resource is designed to support schools in understanding and exploring the context for a young person not eating, and to provide practical guidance for staff in supporting them. The resource includes information on observable behaviours, helpful ways to start a conversation, helpful next steps and approaches to avoid, curriculum suggestions, sensory suggestions and much more.

It is recognised that there are limits to the amount and depth of changes that schools can make, however, the resource aims to provide support for making those changes that are possible in a positive way. Where there are Mental Health Support Teams (MHSTs) working within schools, the resource and training videos should be used alongside and in collaboration with MHSTs.

What additional support is available nationally?

• Beat is the UK’s leading eating disorder charity. Beat share advice for those who may be worried about a pupil. The charity also offers a program called School Professionals Online Training (SPOT) for schools. By accessing SPOT, school professionals will be taught how to spot the early signs of an eating disorder, talk to a pupil exhibiting them, engage their families, and support them to seek medical assessment. SPOT is currently funded for school professionals (including school nurses) in Primary, Secondary and Sixth form schools in the UK.
• Pooky Knightsmith provides a Guide to Whole-School Strategies and Practical Support.

The North East and North Cumbria CYP Provider Collaborative has been involved in supporting further pieces of clinical and strategic work. These include:

• The development of new QNIC/QED standards for feeding management on inpatient units for CYP. This work is being led by Helen West and Ursula Philpot – advanced/consultant dietitians and PhD researchers). The development of these standards aims to reduce restrictive practice, support safe re-feeding, account for neurodivergence and individuality, and improve positive feeding and admission experiences.