As your Parent Carer Forum, we know many families are seeking clarity about support for children and young people experiencing Avoidant/Restrictive Food Intake Disorder (ARFID) or significant difficulties with restricted eating. We recently received an update from Berkshire Healthcare NHS Foundation Trust (BHFT), who provide CAMHS across Buckinghamshire, and I want to share the key points directly with you.

This information will not solve the current challenges overnight, but it does confirm that the issue is recognised and that work is underway to improve provision.

There is currently no agreed ARFID pathway

BHFT have confirmed that:

  • There is no formal ARFID pathway in Buckinghamshire at present.
  • No single service currently holds responsibility for assessing or supporting children with suspected or diagnosed ARFID.
  • ARFID was not included in the original national guidance for Eating Disorder services, which means it was never built into CAMHS specifications.

This lack of a pathway is something families have been experiencing for some time, and it is helpful to have official confirmation of the gap.

BHFT have identified this as a service gap — and work is underway

Importantly, BHFT have recognised that ARFID support is a missing piece within local services. They are now developing an options appraisal to explore what future provision could look like, including:

  • What type of ARFID support is needed
  • Which professionals and services should be involved
  • Whether this can be delivered within current capacity
  • Whether new investment will be required

There is no confirmed timescale, but BHFT aim to progress this work over the summer.

For families, this means that although support is not yet in place, the need is formally acknowledged and planning has begun.

Audit and pilot work: what BHFT found

BHFT shared findings from their recent audit and pilot work, which give a clearer picture of the children being referred for ARFID support.

Many children referred did not meet ARFID criteria — but still needed support

Out of 60 young people referred:

  • Only 27% met the diagnostic criteria for ARFID
  • The remaining children still had significant restrictive eating difficulties, but driven by other factors such as:
    • Anxiety
    • Sensory needs
    • Concerns about shape or weight
    • School‑related stress

These children were supported through CAMHS teams, dietetics, occupational therapy, or signposting to other appropriate services.

This is an important point for families: not meeting ARFID criteria does not mean your child’s eating difficulties are dismissed. BHFT recognise that restrictive eating can have multiple causes and still requires support.

High overlap with autism and ADHD

BHFT reported that:

  • 85% of all children referred had autism, ADHD, or both (diagnosed or suspected)
  • 100% of those who met ARFID criteria were neurodivergent

This aligns strongly with what families tell us: restrictive eating is extremely common among neurodivergent children and young people.

BHFT have acknowledged this and are considering how to meet the wider needs of children with restricted food intake, not just those who meet ARFID criteria.

This includes looking at:

  • Dietetic support
  • Physical health monitoring
  • Management of nutritional risk

for children whose eating is restricted for any reason.

Why this update matters for families

From a Parent Carer Forum perspective, this update is helpful for several reasons:

  • It clarifies the current situation: there is no ARFID pathway, and families are not missing something — the pathway simply does not exist yet.
  • It confirms that BHFT recognise the gap and are actively working on solutions.
  • It shows that BHFT understand the complexity of restrictive eating, especially in neurodivergent children.
  • It reassures families that work is underway, even if change will take time.

We know the absence of a clear pathway can be frustrating and worrying for families. However, this update gives us a foundation to continue advocating for a robust, co‑produced ARFID and restrictive eating pathway in Buckinghamshire.

Our next steps as a Parent Carer Forum

We will continue to:

  • Push for transparency around the options appraisal
  • Advocate for a pathway that reflects the needs of neurodivergent children
  • Highlight the importance of dietetic and physical health monitoring
  • Ensure families’ lived experiences shape any future service
  • Keep you updated as soon as we receive further information

Your experiences and voices are essential in shaping this work, and we will continue to represent them strongly.