This week Worcestershire Parent Carer Forum brought together three Directors from NHS Herefordshire and Worcestershire Integrated Care Board (ICB) and Natalie Morris, CEO & Founder of the Feeding and Eating Disorder Foundation (formerly The Feeding Trust) to discuss how the county can better diagnose, support and treat children with ARFID (Avoidant/Restrictive Food Intake Disorder) and wider feeding difficulties.
Here’s what we already knew, locally and nationally, what we learnt and what was agreed:
The Picture in Worcestershire
- ARFID and feeding difficulties are one of the top-five issue raised with the Parent Carer Forum, mostly but not exclusively, by families of neurodivergent children – both those with a formal diagnosis and those awaiting a diagnosis for autism &/or ADHD.
- Community paediatrics waiting lists are pushing 3 years and support often falls short even once families reach the front of the paediatrics queue.
- GPs typically screen by weight alone; if weight looks acceptable, feeding problems often go uninvestigated, and nutritional harm can surface only much later.
- There is no dedicated Worcestershire ARFID pathway – general paediatric and dietetic support exists, but nothing designed for ARFID.
- The only real funding route for support is via an Individual Funding Request (IFR) to the ICB and very few requests succeed. However, it is impossible to request support without a diagnosis and no pathway exists.
- Some GPs are incorrectly diagnosing ARFID, but still there is no support available.
- Previously Worcestershire Parent Carer Forum commissioned training from the Feeding & Eating Disorder Foundation for both families and health professionals. Both sessions attracted 45+ attendees, showing strong demand for help and more information.
- Some “picky eating” training exists in Worcestershire but is significantly outdated and realistically is doing more harm than good.
The National Picture
- NICE guidance on ARFID isn’t expected for around two more years.
- Feeding and eating difficulties cross health, education and social care, which is a key reason no single service has traditionally owned the problem.
- There are strong links to neurodivergence, but also to medical conditions, trauma and general developmental delay.
- The Feeding & Eating Difficulties Foundation no longer runs standalone clinical services nationally, as funding routes have largely closed, and instead focuses on training and support within schools and other settings.
What we Learnt
- The Feeding & Eating Disorder Foundation has secured funding to start work in some Worcestershire special schools.
- Birmingham’s new pilot ARFID pathway was immediately overwhelmed with referrals; it has since been renamed “feeding and eating difficulties” and uses multidisciplinary triage.
- A very recent national ARFID webinar and an eight-month, 100+ participant national consultation (led by FED) confirms the same gaps nationally. A positioning paper called ‘Building Consensus for Paediatric Feeding Disorder: A UK-led Community of Participation position paper on diagnostic and service gaps in early childhood’ was published and is available for Worcestershire to adopt.
- ARFID and feeding difficulties are in Worcestershire ICB’s commissioning intentions for 2027. This is the first time ARFID has been on the list and a named lead has already been tasked to develop a pathway.
What’s Agreed and Proposed
- Build a locally-designed pathway rather than commission an external standalone service.
- Develop it jointly across the ICB’s four-area cluster that include, Herefordshire, Worcestershire, Coventry and Warwickshire.
- The design process should involve ICB commissioners, clinical leads, paediatricians, FED Foundation, all 4 parent carer forums, councils and schools.
- Natalie Morris will link the ICB team with Birmingham’s more established pathway lead.
- Adopt a tiered model: universal training for family hubs, preschools and special schools; an internal Worcestershire multidisciplinary team (psychology, speech and language therapy, occupational therapy, dietetics) for triage; and improved specialist eating disorder provision for the most clinically unwell.
- Broaden scope beyond ARFID alone to include related difficulties such as dysphagia and general developmental feeding delay.
- Ensure any new model has funded service capacity behind it, not just training for already-stretched staff.
- The ICB lead to raise joint commissioning conversations with the cluster’s four children’s services directors and to keep the four Parent Carer Forums involved to keep SEND family voice central.
