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]

We have also co-developed an ARFID Severity Index and Severity Matrix tool for both children and adults with our national partners. These can support services in thinking about their acceptance criteria for both CYP and adults. The Matrix Tools have been shared nationally and if you would like a copy, please download from the following links:
Severity Index and Severity Matrix Tool – Adult
Severity Index and Severity Matrix Tool – Children and Young People

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’. These include short assessment screen tools which are helpful in triage, and PARDI questionnaire/clinical interview tools which are helpful in assessment and/or diagnosis.
*please note that training is advised before using the full PARDI-AR-Q interview schedule.

Literature detailing example specialist pathway is available here: Towards an evidence-based out-patient care pathway for children and young people with avoidant restrictive food intake disorder

The national guidance for CYP ARFID services is currently pending.

Group programmes are available across the country in a range of formats. These include:

• 2 parent group sessions for basic psycho-education and to assess readiness before starting 1:1 clinical work
• Clinical pathways with the offer being parents groups (face to face). In some places, these are ‘symptom based’ and without formalised or diagnostic assessment
• Adjunct or supplementary support groups and drop-in formats
• Peer support formats
• 3rd sector carers groups programmes
• 3rd sector ARFID group programmes (for adults / those over 16)

 
Group programme offers also vary in terms of their number of sessions, duration and capacity. Content also varies but they all typically include psychoeducation, with longer group programmes including more details on developing effective carers or treatment/exposure strategies.

Although as yet, none of these provide published studies there is emerging data showing positive outcomes both for nutritional change and patient/carer experience. Group programmes appear to show tentative capability for managing high volumes of need in a cost-effective way, particularly for those mild to moderate presentations.

Hazel is an Occupation Therapist working with SYEDA who are a 3rd sector organisation running an effective ARFID group programme for 16-24 year olds. Her kindly shared reflections on what makes this group successful included:

• Start with the person at the centre – this is their journey
• Everyone is different. Therefore make the group programme focused on individual goals – weave opportunities for individuals to develop, build and reflect on this as often as possible.
• Offer a safe group space to reflect, explore and understand eating difference
• Remove as many rules as possible (e.g. what people have to ‘complete’ or how they should interact)
• Ensure your participation numbers enable everyone to feel heard and to be validated
• Create a group for people to ‘come as they are’
• Clinician skill is more than just ARFID knowledge – it’s about hearing people’s stories and being able to pick out what is important.

The NENC Provider Collaborative ARFID Project hosts two ARFID Task and Finish Groups for the development of services across CYP and Adult provision, for the North East and North Cumbria. 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

 
This picky and selective eating affirmations resource – AutisticMeltdowns – is also really helpful for professionals to hold in mind.
It comes from the Lived Experience Educator website which hosts a lot of valuable content related to neurodiversity.

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 National Centre for Autism and Mental Health runs a 2-day online course for Autism and Eating Disorders/Disordered Eating (including ARFID)

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]

The British Dietetic Association (BDA) has an ARFID Sub Group. This group hosts a CPD meeting every two months. For details and to join please visit: ARFID Specialist Sub-Group – British Dietetic Association (BDA). You can also follow the subgroup on instagram via: @bda_arfidsubgroup

This BDA ARFID Sub group has developed an ARFID training course, and is currently developing a dietetic toolkit for clinical practice, NDR resource and dietetic competency standards.

The ARFID position statement for dietitians is available here: ARFID Position Statement and will be reviewed and updated shortly.

There is an informal WhatsApp group for occupational therapists (OT’s) working in eating disorders with an interest in ARFID. This group aims to connect and share resources, training, interesting news studies, jobs or news stories. It is a semi closed group for only registered OT’s or OT students. Please scan this QR code to request to join.

Details of bi monthly MS TEAMS meeting are shared via this whats app group. These meetings give further opportunity for networking, sharing resources and it is hoped with time workstreams will be developed to enhance OT work and evidence base working with ARFID. The group is supported by North East and Yorkshire regional mental health team (NHS England) but OT’s are welcome from any part of the country. More information can be found from [email protected] or [email protected]

The British Dietetic Association ARFID Sub-Group wrote an awareness raising article – What is avoidant restrictive food intake disorder? – for the British Journal of GP’s Life Magazine which includes additional signposting information for primary care.

The Primary Care Children and Young People’s (CYP) Eating Disorders (ED) Decision Treehas been developed by 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 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).

A collective of specialist dietitians from the BDA ARFID sub-group have co-produced a practical and helpful resource to support vitamin and mineral supplementation in those with ARFID or sensory difficulties (all age).

• 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).
• And here you will find a 1 hour CBT-AR Training video for ARFID
• 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 regional and national services, the NENC ARFID project developed Emergency re-feeding plans for sensory restrictive eating disorder admissions to acute paediatric wards

This is suitable for all ages and was shared nationally.

This file may not be suitable for assistive technology. If you use assistive technology (such as a screen reader) and need a version of this document in a more accessible format, please email [email protected]

An additional patient-facing supplementary sensory admissions resource has been co-produced with wider services and service users.

As well as providing various validated assessment tools, the Maudsley Centre for Child and Adolescent Eating Disorders shares several downloadable resources. These include the ‘what matters to me’ parent/carers evaluations and the ‘ARFID Intervention Monitoring Sheet (AIMS)’ (parent/carers or self). These can help you to evaluate clinical interventions and support you in establishing meaningful shared clinical goals. These resources are available to download from the Maudsley Centre for Child and Adolescent Eating Disorders

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

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

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