Professional support for services working with Avoidant Restrictive Food Intake Disorder (ARFID)

Avoidant Restrictive Food Intake Disorder (ARFID) is a classified eating disorder diagnosis within both the DSM-V (2013) and ICD-11 (2022) diagnostic manuals.

According to the DSM-5, ARFID is diagnosed when:

• An eating or feeding disturbance (e.g., apparent lack of interest in eating or food; avoidance based on the sensory characteristics of food; concern about aversive consequences of eating) is manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one (or more) of the following:

• • Significant weight loss (or failure to achieve expected weight gain or faltering growth in children).
  • Significant nutritional deficiency.
  • Dependence on enteral feeding or oral nutritional supplements.
  • Marked interference with psychosocial functioning.
• The eating/feeding disturbance is not better explained by a lack of available food or by an associated culturally sanctioned practice.
• The eating/feeding disturbance does not occur exclusively during the course of anorexia nervosa or bulimia nervosa, and there is no evidence of a disturbance in the way in which one’s body weight or shape is experienced.
• The eating/feeding disturbance is not attributable to a concurrent medical condition or not better explained by another mental disorder.
• The severity of any eating/feeding disturbance occurring in the context of another condition or disorder exceeds that routinely associated with the condition or disorder, warranting additional clinical attention.

 
It is important to note that ‘picky eating’ applies to almost all people and exists as a continuum, or a spectrum, from disliking a few foods to significant restriction and avoidance. ARFID is the clinically diagnosable and severe end of this spectrum. It is not fussy eating, and the eating restriction is such that it has a significant detrimental impact on the quality of life of those affected (and their families). ARFID does not occur exclusively in low-weight status, and it is important to recognise that significant nutritional deficiency can also occur in average, and above-average, weight individuals.

ARFID is commonly associated with co-morbid autism where the avoidance of foods often stems from sensory specificity. However, not all individuals with ARFID have autism and not all individuals with autism have ARFID. Individuals can present with a chronic history of food avoidance, such as long-term sensory specificity which has worsened over time. They can also present with an acute onset of food avoidance such as a sudden restriction of foods secondary to phobia (e.g. vomiting, choking or contamination). This is often associated with trauma: however, this does not need to be a direct traumatic experience. For example, witnessing a choking episode may be sufficient to trigger the phobic avoidance.

The understanding of ARFID is often best understood as per the Venn diagram below. Most of the time, a person struggling with ARFID will have more than one presentation in combination.

If you’d like to understand more about ARFID you can view our co-produced NHS-England Film featuring both clinicians and a parent story here: NHS England ARFID Awareness Film

And the associated ARFID awareness leaflet here: ARFID Parent/Carer leaflet

THE NENC ARFID Project has co-produced resources to support the development of local services. If you would like a copy of an example MDT specialist ARFID Assessment form please contact the project lead on: [email protected]

There are also ARFID Severity Index and Severity Matrix tools currently under development. These can support services in thinking about their acceptance criteria’s for both CYP and adults. These are currently under pilot in CYPS and adult services and when available, can be obtained by contacting Clare on the email address above.

Other national resources available include:

An extensive breadth of assessment tools are available from the Maudsley Centre for Child and Adolescent Eating Disorders under ‘ARFID assessment tools and resources’
*please note that training is advised before using the full PARDI-AR-Q interview schedule.

Printed service development research, Towards an evidence-based out-patient care pathway for children and young people with avoidant restrictive food intake disorder is availble on the ScienceDirect website.

The national guidance for ARFID services is currently pending.

The NENC Provider Collaborative ARFID Project hosts two ARFID Task and Finish Groups for the development of services across CYP and Adult provision. If you would like to find out more information about either group, please contact: [email protected]

The NENC also holds an extensive contact/distribution list for the sharing of updates, resources and training opportunities. If you wish to be included on these distribution lists, please contact the ARFID Project support officer: [email protected]

FutureNHS Platform contains a significant amount of recorded content and examples of other services from North East and Yorkshire Regional Mental Health Team

To access this, register on the FutureNHS Collaboration Platform

Then request access to the North East and Yorkshire Regional Mental Health Team

Once permission is granted, follow this path by clicking each tab on the website in turn:

1. Childrens and young peoples mental health
2. Eating disorders
3. ARFID
4. Service showcase

 
These FutureNHS pages also contain ARFID data mapping reports from across the region.

Please note: this content is from CYP services however the principles are applicable to other ages

The NENC ARFID Project has co-worked with many people with lived experience of ARFID, and their families. It’s incredibly important to them that that the professionals they see:

• Listen and take their concerns and worries seriously so that they feel heard and understood
• Act with empathy and compassion for the challenging situation they are in
• Are non-judgemental, non-critical and non-blaming
• Avoid making assumptions
• Make reasonable adjustments to accommodate their needs and communication preferences – this is particularly important for those with co-occurring autism
• Take reasonable steps to improve their knowledge of ARFID or can appropriately acknowledge the limitations in their understanding and seek to signpost to those with more knowledge of the condition

 
Regarding establishing services or pathways for those with ARFID, those with lived experience tell us that it is important that any developments:

• Create pathways which are clear and easy to navigate/understand – that service users avoid being ‘bounced around’ different services
• That clinicians/professionals have adequate knowledge and skills to support them/their loved ones
• That they are seen quickly from the point of referral (within fpur weeks for routine referrals/within one week for urgent referrals)
• That services seek to include clear and comprehensive ARFID diagnosis if/where possible

FutureNHS Platform contains a significant amount of recorded content and examples of other services* from our neighbouring partners in North East and Yorkshire Regional Mental Health Team

To access this, register on the FutureNHS Collaboration Platform

Then request access to the North East and Yorkshire Regional Mental Health Team

Once permission is granted, follow this path by clicking each tab on the website in turn:

1. Childrens and young peoples mental health
2. Eating disorders
3. ARFID
4. Training

 
The content includes 1 hour training modules on:

• ARFID early identification training
• Assessment, diagnosis and identification of risk
• Nutritional strategies for ARFID
• Paediatric management of ARFID
• ARFID treatment options
• Managing emetophobia and choking phobia in ARFID
• Family Based Treatment in ARFID

 
* Please note: this content is from CYP perspective however many of the principles are applicable to other ages.

Through the North East and Yorkshire Regional Mental Health Team on FutureNHS you will also find:

• National webinars on all-age services and delivering support to adults and older adults
• A 3-hour introduction to ARFID training module
• A 1-hour learning event on communication and language for working with autist people
• Training on autism and eating disorders
  Training on how to use CCi guided self-help worksheets
• Motivational interviewing training

 
You can also find course-style learning material from: www.bebodypositive.org.uk under the ARFID and clinician tabs.

The University of Winchester offer a comprehensive distance learning ARFID course: Diagnosing and Managing ARFID – A comprehensive course

The North East and Yorkshire Regional Mental Health Team are running an ARFID Champions programme (for professionals working with CYP across our region). To find out more, please contact: [email protected] or [email protected]

We are currently only aware of dietitian-specific resources for ARFID. Other professions/disciplines will be added if/as we become aware of them.

The British Dietetic Association (BDA) has an ARFID Specialist Interest Group (SIG). This group hosts a CPD meeting every two months. To join this, you must be a member of both the BDA and the Mental Health Sub-Group (MHSG). To gain access, please contact: [email protected]

This BDA ARFID SIG is currently developing an ARFID training course, dietetic toolkit for clinical practice, NDR resource and dietetic competency standards.

The ARFID position statement for dietitians is available here: ARFID Position Statement

• Professional resources are available from ARFID Awareness UK
• Cognitive-Behavioural Therapy for Avoidant/Restrictive Food Intake Disorder: Children, Adolescents, and Adults (Book) by Jennifer J Thomas and Kamryn T. Eddy (available in print)
• CBT for ARFID: Patient and Family Workbook A guided self help guide for patients and families using CBT-ARFID (CBT-AR).
• Medical emergencies in eating disorders (MEED): Guidance on recognition and management (CR233)
  MEED Guidance for assessing and managing medical risks in eating disorders is the essential risk assessment tool used for all eating disorders, including ARFID, across all ages.

 
In partnership with other services, the NENC ARFID project developed Emergency re-feeding plans for sensory restrictive eating disorder admissions to acute paediatric wards

This is currently under review and the second edition will be made into an all-age guideline, with an additional patient-facing supplementary resource. When available, these can be obtained by contacting: [email protected]

The offers below are currently only available for CYP services. Discussions about the development of parallel services for adult cases are in discussion/development.

The NENC ARFID Project hosts a Virtual Consultation Support (VCS) Pod. This is a monthly virtual meeting where two clinical cases are submitted for expert MDT and community advice and guidance. Any service/professional within NENC working with CYP aged 8-18 with ARFID/suspected ARFID are able to submit a case discussion request. Alternatively, professionals are welcome to join to learn more from the case discussions and practice being shared. To join the VCS Pod or to find out more information please contact:[email protected]

The North East and Yorkshire Regional Mental Health Team offer a Community of Practice case consultation model. Here case examples from anywhere across the NENC&Y are discussed with practice suggestions shared by all joining members. To join the Community or Practice or find out more please contact: [email protected] or [email protected]

BEAT host an Eating Disorders Community of Practice for nurses, GPs and the primary care workforce. For more information visit this page on the BEAT website

There is now a comprehensive website available with resources, webinar content and extensive signposting. Please direct patients and/or families to Support for Avoidant Restrictive Food Intake Disorder (ARFID)

Service access for both assessment and treatment varies across NENC depending on age and locality. In most cases, dedicated ARFID services remain under development in local areas. Information about dedicated local pathways will be added as and when this is available