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 the end of 2025.

You can also listen to this Autism and Eating Disorders (EDAC) Research Podcast: A dietitians Perspective with the NENC Provider Collaborative Advanced Eating Disorders Dietitian, Clare Ellison.

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 NENC Provider Collaborative, with national partners and individuals with lived experience, has co-produced this resource for supporting nutritional intakes in individuals with attention deficit hyperactivity disorder (ADHD).

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.

Pica is an eating disorder characterized by the persistent consumption of non-nutritive, non-food substances over a period of at least one month.

From the ICD-11 Diagnostic Manual (Code: 6B80)
Pica is characterized by the persistent eating of non-nutritive, non-food substances over a period of time that is inappropriate to the developmental level of the individual and not culturally or socially normative.

Diagnostic Features:
• Persistent consumption of substances that are not typically considered food and have no nutritional value (e.g., soil, paper, hair, paint).
• The behaviour is not part of a culturally accepted practice.
• The behaviour is developmentally inappropriate (e.g., not typical for the individual’s age or cognitive level).
• The ingestion behaviour is not better explained by another mental or medical disorder unless it is severe enough to warrant independent clinical attention.

Exclusions:
• Eating behaviours that are part of cultural or religious practices.
• Ingestion of substances due to nutritional deficiencies alone, unless the behaviour persists and meets the criteria above.
• Behaviours that occur exclusively during another mental disorder unless they are clinically significant in their own right.

While occasional mouthing of non-food items may be developmentally normal in infants and toddlers, Pica is diagnosed when such behaviour persists beyond the expected developmental stage or occurs in older individuals. Pica is most frequently observed in children, pregnant individuals, and those with learning difficulties or neurodevelopmental disorders.

Clinically, Pica can lead to a range of complications, including gastrointestinal obstruction, dental injury, parasitic infections, and heavy metal toxicity (e.g., lead poisoning from paint ingestion). Assessment should include a thorough history of the ingested substances, frequency and context of the behaviour, developmental and psychosocial background, and any associated medical or psychiatric conditions. Laboratory investigations may be warranted to identify underlying deficiencies or toxic exposures.

Supporting clinicians working with individuals with Pica:
• The PARDI-AR-Q assessment and outcome tool is validated for use with Pica, ARFID and Rumination Disorder and is available from: Featured resources – The Maudsley Centre for Child and Adolescent Eating Disorders
• The National Pica Advisory Service (TNPAS) is an excellent source of information
• The Williams (2015) Severity Index may be used to support decision making regarding severity:

Risk assessment (Williams, 2015)

1. Mild – Mouths objects & has swallowed small pieces of paper/strings & passed with no difficulty
2. Moderate – Mouths objects & has swallowed small pieces of paper/strings or other items considered non-dangerous in small amounts – has experienced one or two incidents of coughing up items
3. Severe – Mouths objects and has swallowed small pieces of paper/strings or other items considered non-dangerous in small amounts – has experienced one or two incidents of choking and coughing up items – has also had X-Rays to rule out pica on more than one occasion
4. Dangerous – Ingests foreign object at least weekly – history shows several X-Rays & documented ingestion of foreign objects considered dangerous – screws, bolts, jewellery, metal/coins
5. Life-threatening – Has had one or more surgeries for the removal of foreign objects and continues to engage in pica at least once every 30-90 days

Severity index for Pica (Don E. Williams, Ph.D., BCBA-D @ 2015) Note: This is one tool that may be helpful but should not be the sole determinate or of staffing, programs or dangerousness.

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.

The Centre for Clinical Interventions includes excellent self-help resources for mental health problems, including disordered eating, that staff can signpost to.

Further self-help support can be found at: www.bebodypositive.org.uk

The Centre for Clinical Interventions also has a YouTube page which demonstrates various therapeutic techniques for clinicians and students.

Additionally, this 9 minute video is an excellent demonstration of clinical value of ‘connecting before directing’ regarding therapeutic help for eating difficulties: www.anorexiafamily.com/videos-eating-disorder-anxiety-child