Confusion between avoidant restrictive food intake disorder, restricted intake self-harm, and anorexia nervosa: developing a primary care decision tree

Clare Ellison is an Advanced Dietitian and North East and North Cumbria Provider Collaborative Project Lead.

Ursula Philpot is a Consultant Dietitian and North East and Yorkshire Regional Mental Health Team Clinical Lead for Eating Disorders.

Eating disorders are typically and appropriately managed in specialist services. However, despite national policy recommending self-referral as an access route,¹ in most cases the front door is via a referral from primary care.

While GPs and Additional Roles Reimbursement Scheme (ARRS) mental health staff remain in an excellent position to do this, they are of course over-burdened, short on time, and, in most cases, not expert in this area. Restriction of food intake can indicate a range of nuanced clinical presentations within the eating disorders spectrum, each needing a different treatment approach. This increases the unintentional likelihood of initially mislabelling restricted eating presentations as the most well-known eating disorder: anorexia nervosa. Doing so could lead to inappropriate signposting, frustrating bounce-back referrals, assessments without treatment, or treatments that are not best suited.

One such example of this knowledge gap was the inclusion of avoidant restrictive food intake disorder (ARFID) in psychiatric nomenclature. Although ARFID has been clinically included in diagnostic manuals since 2013,² we identified an ongoing significant lack of knowledge and awareness of the condition and wrote an ARFID awareness article for the BJGP.³

In terms of an evolving specialist clinical narrative to which primary care is likely not privy, there is also a non-diagnostic emergence of understanding some presentations of restricted eating known as restricted intake self-harm (RISH). RISH is a formulation-driven term that aims to describe the subset of patients who present with restricted intake (both foods and fluids) as a method of indirect self-harm. In this way it is different from AN.

Traditionally, those with a RISH presentation were categorised under either atypical AN, other specified feeding and eating disorder, or ‘disordered eating’. However, public and patient engagement across our locality found such terminologies were experienced as belittling, dismissive, and overly broad. The engagement group felt that the term RISH was the most accurate at describing their difficulties, improving validation and understanding, and therefore improving treatment engagement and success.

Consequently, the term RISH was coined, driven by child and adolescent psychiatrist Clare Fenton, and further validated by a national working group exploring research and practice-based suggestions (due soon). As a result of this work locally, the primary care clinical leads in our area (across the North East, North Cumbria, and Yorkshire) began to hear of these developments, recognised a clinical need, and asked how to work in partnership to support this need.

So, what do you do when faced with a knowledge and awareness gap and busy clinicians in an environment of time-pressured appointments and the need for accurate onward referrals? The step-by-step Children and Young Peoples (CYP) Eating Disorder (ED) Decision Tree was developed.

The CYP ED Decision Tree tool was developed by the North East and Yorkshire Regional Mental Health Team, in collaboration with our ED and primary care clinical leads, and the North East and North Cumbria Provider Collaborative. The tool deliberately takes a practical, logical, and step-by-step approach to best assist time-poor clinics. It explores what steps to take in primary care when a young person presents with restricted oral intake, crucially differentiating between those of body dysmorphia and those without. In doing so, it provides an educative opportunity around this difference that doesn’t minimise concern as a result. The tool then provides further information, signposting, and suggestive next steps. It includes a condensed version of understanding the highest risk flags in eating disorders, and a blank page at the end to complete with your local services for onward referral.

You can access the tool at the following URL: https://www.cntw.nhs.uk/wp-content/uploads/2024/08/Primary-Care-ED-Decision-Tree.pdf

References
1. NHS England. Access and waiting times standard for children and young people with an eating disorder: commissioning guide. 2015. https://www.england.nhs.uk/wp-content/uploads/2015/07/cyp-eating-disorders-access-waiting-time-standard-comm-guid.pdf (accessed 17 Oct 2024).
2. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th edn. Arlington, VA: American Psychiatric Association, 2013.
3. Ellison C, Philpot U, Fuller S, et al. What is avoidant restrictive food intake disorder? Br J Gen Pract 2024; DOI: https://doi.org/10.3399/bjgp24X738957.

Featured photo by David Vig on Unsplash.