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.

In time we plan to share here further work products, developments and learning. This includes a series of neuroaffirmative good practice examples and we also aim to deliver a collaborative learning event in 2025.

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.

We will also share here practical pathway examples of working helpfully with those with RISH when these are available.

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

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 young people 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 those with PAWS, noting that support for those individuals was historically needed from one of a few specialist treatment centres located across the UK, at least 3 hours from a person’s home, typically for a duration of more than 18 months. Recognising this, our work sought to draw together the current literature, together with expertise from these specialist centres, regional experts and with broad lived experience perspectives (from the UK and USA). The working group initiative and subsequent 24-page all-age document arose from recognising that there was a poor understanding of PAWS across clinical settings. This therefore led to unintended unhelpful clinical practice, which exacerbated the presentation and led to prolonged admission stays – typically located a significant distance from home. This document therefore seeks to collate expert consensus and research evidence to:

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

 
Since embarking on this learning, the NENC Provider Collaborative has successfully offered 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) but especially, because it has been possible to deliver this care close to home.

This document is being finalised to ensure academic integrity and will then be available here.

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.

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.