High Risk Avoidant Restrictive Food Intake Disorder Service

Avoidant restrictive food intake disorder is a relatively newly recognised condition that describes feeding difficulties such as:

• an apparent lack of interest in eating or food
• avoidance based on the sensory characteristics of food
• concern about aversive consequences of eating (for example being sick or choking)

To be given a diagnosis, the feeding difficulties must be severe enough to impact the child or young person’s ability to meet their:

• energy needs
• nutritional needs
• psychosocial functioning (ability to perform their day-to-day activities)

This would typically be associated with:

• concerns around weight or failure to grow as expected
• nutritional deficiency
• dependence on alternative feeding (such as supplements or tube feeding)
• significant difficulties in psychosocial functioning, which means difficulties functioning in daily life (such as poor school attendance, not eating all day at school, unable to attend family, peer or school functions)

Our team comprises a:

• clinical psychologist
• specialist dietician
• specialist occupational therapist
• clinical coordinator

We also work alongside our colleagues from community paediatrics and child psychiatry.

• Not every child or young person with restricted food intake or with disordered eating will have an eating disorder. Eating disturbances including acute food refusal can be features of other conditions or difficulties.
• The team works with families, young people and other services known to them, to consider what may be driving or maintaining their restrictive eating difficulty.
• Joint working approaches are the foundation to deliver holistic care for mental and physical health needs. We work with other services because a joint approach is needed to better meet the needs of children experiencing restrictive eating difficulties.
• We may signpost to other services and resources, where other needs are identified as a priority.
• All young people and families can access and engage with recommended resources for learning, support and avoidant restrictive food intake disorder awareness.
• We value hearing the child or young person’s voice and understanding the difficulties the avoidant and restrictive eating has on the whole family.

All children and young people must be registered with a Cornwall GP. They must be between 8 and 18 years of age. Referrals should also meet the following criteria:

• escalating food or fluid restriction, likely to lead to imminent hospital admission or a refeeding risk
• risk of Mental Health Act assessment or mental health admission
• after a medical emergencies in eating disorders (MEED) assessment, red alerts which identify a median BMI of less than 70% or an amber MEED of 70% to 80% with ongoing weight loss
• meeting MEED red risk assessment criteria
• rapid loss of weight (not caused by an acute illness) of 1kg per week for 2 weeks, linked to escalated restricted food intake
• unintentional harm through food restriction, which poses a severe or life-threatening risk
• chronic malnutrition where a child or young person declines prescribed nutritional supplementation due to ARFID
• escalating risk of nasogastric tube, nasojejunal tube, or percutaneous endoscopic gastrostomy feeding due to food restriction
• likely to meet the clinical criteria for a diagnosis of ARFID that does not relate to a medical condition, lack of food provision, or weight or body shape concerns

Exclusion criteria

• Any other medical, emotional, or psychological concern which might be causing an inability to eat (this includes pain)
• Lack of access to adequate food and fluid
• Functional swallowing difficulties
• Intentional restriction to lose weight or avoid weight gain such as anorexia, bulimia, or other specified feeding or eating disorder (these conditions are managed by the Children and Young People's Eating Disorder Service)
• Neurodegenerative or other significant long-term condition

Cornwall paediatricians

All referrals that meet the high-risk criteria will need to be discussed with the Royal Cornwall Hospitals NHS Trust paediatric ARFID consultant. You can send the referral by email to: cft.referrals.cyp-arfid@nhs.net. Please include 'ARFID referral' in the subject header.

Please do not use the Children and Young People's Eating Disorder Service referral form, as this is not an accepted pathway for our service. A separate referral form is available from our service.

Devon paediatricians

If you are making a referral for a child registered with a Cornwall GP, call or email the ARFID service. Again, referrals must meet the high-risk criteria.

GP or other health professionals

Triage according to health needs. If you feel the referral meets the threshold above, please refer directly to the Royal Cornwall Hospitals NHS Trust paediatric ARFID consultant. Email cft.referrals.cyp-arfid@nhs.net. Again, please include 'ARFID referral' in the subject header. If the referral does not meet the threshold, consider the information below.

Further information

For selective eating referrals with concerns around growth of nutrition but that do not meet the criteria, more information is available. Read advice on dietetic support available for children or young people with restricted eating.

Families

Lots of information is available for families. The other dropdown boxes on this page will signpost you to extra support.

For immediate concerns, contact the child or young person's GP. In an emergency, call 999 or refer to the emergency department. Young people and families can also receive mental health support from NHS 111. Call 111 and select option 2.

We welcome your views, feedback and suggestions about how we can improve our service.

• Ages 9 to 11 day services experience of service questionnaire.
• Ages 12 to 18 day services experience of service questionnaire.
• Parent of carer day services experience of service questionnaire.

• Signposting to a range of resources, information and support.
• Online parent carer group.
• Voluntary, community or social enterprise organisations.
• Parent Carer Cornwall Neurodevelopmental Hub.

• Multi-disciplinary team consultations offered to referring healthcare professional.
• Training to support professional staff teams.

What should I expect from a multi-disciplinary team consultation?

Our multi-disciplinary team consultations usually run on a Tuesday. They enable services who already have professional relationships with the child or young person and family to seek specialist clinical advice and guidance. The consultation will be held with the referring professional not with the child or young person or family.

To help us understand the impact of the feeding difficulties on the child or young person and family we will send out several forms and questionnaires for the referrer to complete with the family prior to the consultation. There will be a combination of clinicians at these meetings, usually including a medic and allied health professionals.

The consultations will be held either in person or online via Microsoft Teams with the referring professional or team to discuss their referral, current concerns and expectations for the child and young person.

As a team, we will develop a formulation report based on our discussions at the consultation. The referring professional will then arrange to meet with the family to share the formulation report.

The service do not offer direct interventions as part of a consultation but seek to support other services to implement a range of options.

What should I expect from an initial assessment?

The child or young person and family will be offered an initial in person (face-to-face) assessment in either the medic led clinic or allied health professional led clinic (such as psychologist, dietician, or occupational therapist).

These clinics usually run on a Tuesday. The assessments generally last up to 2 hours.

There will usually be between 2 and 5 clinicians including a combination of medic, psychologist, occupational therapist, and dietician. This can seem like a lot of people, but it helps us to make a more complete assessment of your child or young person’s current difficulties and aims to avoid multiple assessment with different professionals.

The team may need to do some physical monitoring (such as weight, height, blood pressure) and potentially a blood test. However, this will be highlighted in your appointment letter and support will be provided if needed.

To help us understand the impact of the feeding difficulties on the child or young person and family we will send out several forms and questionnaires for the family to complete prior to the assessment.

Parents and carers need to attend the assessments with their child. It is really important to get the perspectives of everyone involved. We offer time for parents to speak with the clinicians without the child or young person present and where appropriate for the child/ young person to speak with the clinicians individually.

We value hearing the child or young person’s voice and understanding the difficulties the avoidant and restrictive eating has on the whole family.

What happens at the end of the assessment?

The initial assessment aims to develop a shared understanding between the child or young person, family and professional of the feeding difficulty. This determines whether the service is the right service for them.

If it is not the most appropriate service, the assessment provides alternative recommendations for that individual. This could include getting advice with some suggested strategies or escalation to getting risk support. A copy of this outcome report will be sent to the individual or family, GP, referrer and other teams who support the family. This could include redirection to another service for example Eating Disorder Service or CAMHS.

If this is the most appropriate service, the child or young person may be offered further sessions.

At this point the child or young person will be assigned a link allied health professional from the service.

Where will an assessment be offered?

Depending on whether you attend a medic led or allied health professional led clinic, the assessment is most likely to take place in mid-Cornwall, for example in Truro.

• Urgent medical review.
• Complex case discussion.
• Support from Multi-Agency Rapid Response Service, Sowenna, safeguarding and referral where needed.

What should I expect?

• Getting risk support is for children and young people who need urgent medical review and safety planning with the paediatrician.
• Where children, young people or parent or carer have not consented or under the Mental Capacity Act or Mental Health Framework, a complex case discussion may be needed with the referring health professional.
• If high risk of suicide, serious self harm, self neglect and/or risk to others, support may be considered from the Multi-agency Rapid Response Service. In some circumstances mental health inpatient admission may be required. A safeguarding and multi-agency referral unit referral may also be required.
• The service will not hold ongoing clinical responsibility for children or young people on the getting risk support pathway.

Avoidant restrictive food intake disorder is most typically a chronic condition, with food restriction being long standing and so the child or young person may not present as acutely physically unwell.

Any of the red flags below indicate a clinical emergency and referrers must follow the guidance given.

Red flags

Any 1 or more of the following:

• heart rate less than 40 beats per minute or irregular
• blood pressure sitting systolic less than 80mmHg, diastolic less than 50mm Hg
• temperature less than 35.5 C
• food intake of no food or less than 500Kcal per day for 5 days or more
• weight loss of more than 1kg per week for 2 consecutive weeks
• fluid restriction resulting in symptoms of dehydration or poor urine output

For any red flags, the referrer must contact the child or young person’s GP on the day for advice and onward referral to the local paediatric team (for all young people up to the age of 18).

Contact information

• Royal Cornwall Hospitals NHS Trust (Treliske), call 01872 250 000 or contact the on-call consultant paediatrician
• University Hospitals Plymouth NHS Trust (Derriford), call 01752 202 082 or contact the on-call consultant paediatrician

Resources

• Maudsley Centre for Child and Adolescent Eating Disorders.

Should your child or young person’s mental health, physical health or risk worsen, contact their current health professional to share this information.

If following assessment your child or young person is accepted for further sessions, they will be placed on a waiting list. Waiting times for this can vary depending on the clinical demand for the service.

Although your child or young person may be allocated a link professional to assist with your communication with the team, we provide a team approach to support your child or young person’s journey through our service.

Due to demand for our services, we encourage you to inform of us of any appointments you may need to cancel or rearrange. We follow a ‘was not brought’ policy. This policy means we have a limit of missed appointments we can accept before considering discharge from the service. This is to ensure all children and young people waiting are safeguarded and allows other people waiting for support to access help in a timely way.

We are not a crisis service. Professionals can provide a maximum number of appointments at any given time due to supporting many children and young people. This means that if your child or young person is open to the team and requires more intensive support due to an increased risk to themselves or others, a support request can be made to our Multi-Agency Rapid Response Service for enhanced risk support if clinically appropriate.

We understand that coming to meet unfamiliar people and sharing personal information with us can feel an overwhelming or a worrying experience.

Your first experience of meeting our team will be at your initial assessment. This assessment hopes to explore a range of topics so that we can better understand you.

We will ask you questions about:

• family life
• hobbies
• education
• your physical health including eating and drinking
• what you are struggling with at present
• how things could be better for you
• any goals you might have
• your safety within yourself, at home and in the community

We encourage you to think about some of these topics, your strengths, and challenges ahead of the appointment and you are welcome to write notes down and bring this with you. This might be helpful in making sure you share as much information with us as you can to help your assessment outcome.

We offer you time to be seen alone in the assessment if that would be helpful for you.

We are here to learn what your needs are. This might mean that other services might be more helpful for you based on what you would like support with.

Attending appointments is not something you have to do. It is your choice to work with us as your care will be led by you.

If you do not feel ready to work with us, or if you decide you would like to stop attending once you have started, we will respect your decision and will provide safety planning for you.

If we feel that you are at high risk of harm and not feeling able to work with us, we may discuss alternative options with you and your parent or carers.

All information you share with us in your appointments will be kept confidential between yourself and the team. If you share any information with a professional that suggests you may have been or are currently at risk of harm from others or to others, we have a duty of care to share this with the relevant services. If we need to do this, we will be open with you as to why we are doing this and who we are sharing this information with.

If you require reasonable adjustments to be made prior to your appointment, let us know as soon as possible.

• Aneurin Bevan Paediatric ARFID Service.
• ARFID Awareness UK.
• Beat Eating Disorders: The UK's eating disorder charity.
• Food refusal and avoidant eating in children, including those with autism spectrum conditions: Practical guide for parents and professionals by Gillian Harris and Elizabeth Shea.
• National Eating Disorders Collaboration Australia ARFID factsheet.
• North East and North Cumbria NHS Provider Collaborative ARFID Resource Library.

Videos

• Autistic teen's avoidant eating workbook.
• Cornwall Council Autism in Schools Team.
• Helping your autistic child: A self-help guide for parents.
• National Autistic Society.
• Neurodiversity Hub eating and drinking advice.
• Pathological Demand Avoidance Society.
• Pathway for eating disorders and autism: Developed from clinical experience.
• Supporting autistic people with eating disorders: A guide to adapting treatment and supporting recovery.

• Cornwall Council health visiting.
• Infant and Toddler Forum weaning advice.
• NHS Start for Life feeding your baby advice.
• NHS Start for Life weaning advice.
• Thriving Together Team.

• Be Body Positive.
• Mental health support team for children.
• Kooth.
• SilverCloud.
• Young Minds.
• Young People Cornwall.

• British Dietetic Association guide to health eating for children.
• British Nutrition Foundation toddlers nutrition advice.
• Caroline Walker Trust: Search the publications list for the following eating well guides:
  • first year of life
  • 1 to 4-year-olds
  • learning disabilities

• Avoidant restrictive food intake disorder guide for parents and carers: By Rachel Bryant.
• Charlie Waller Trust: Supporting a child with an eating problem guidance for parents and carers.
• FEAST: A global support and education community of and for parents of those with eating disorders.
• NHS Cornwall and the Isles of Scilly Talking Therapies: A free, confidential service for people aged 16 years and over who are registered with a GP in Cornwall and the Isles of Scilly. Provide treatment for common mental health difficulties such as low mood, stress, and anxiety. You can refer yourself to this service without support from your GP.

• Making sense of your sensory behaviour: Sensory approach for parents and carers.

• Child Feeding Guide.
• Ellyn Satter Institute.
• Gentle Eating Book: The easier, calmer approach to feeding your child and solving common eating problems.

• New Maudsley skills-based training: Caring for a loved one with an eating disorder.
• Parental Minds: New Maudsley approach online workshops for anyone caring for a loved one with an eating disorder including ARFID.
• Parent support and education workshops in Cornwall: Introduction to sensory processing.
• Understanding sensory processing and integration in teenagers and adults: Online workshop.