Campaigning and advocacy are organised actions aimed at influencing organisational practices, policies, and/or public awareness. 

Read about our current and previous work related to this below:

A call for urgent action to prevent harm from malnutrition in children and adults with selective eating - May 2026

In response to the Prevention of Future Deaths report of 5-year-old Joshua Allcock, published in January 2026, the Autism Sub-Group committee rallied its parent and sibling group committees (the Paediatric and ARFID groups) to propose an open letter to NHS England highlighting that we are concerned that these are not three isolated tragedies and that action is urgently needed. 

Joshua ate a limited diet and was autistic. He died of dehydration secondary to what was posthumously characterised as avoidant/restrictive food intake disorder (ARFID). A Prevention of Future Deaths report is issued by a coroner in England or Wales to highlight safety concerns and urge action to prevent more deaths. This was the third Prevention of Deaths report related to ARFID/ selective eating within the previous 5 years, all in England, and all in autistic individuals. You can read the reports and responses for 5-year-old Joshua here, for 7-year-old Alfie Nicholls here, and for 26-year-old Owen Hinds here.

The committees agreed, and the BDA gave the go-ahead for a joint open letter, and the charity ARFID Awareness UK also added their words of support and signatures to it. The letter was sent on 18th May 2026, and shared with the heads of the NHS in Wales, Scotland and Northern Ireland a few weeks later.

Read our letter 

here.

Responses received

1) From Carol Picton-Lynas, Head of CAMHS Policy Unit, on behalf of the Department of Health in Northern Ireland

here.

2) From Jacqueline Totterdell, Director General Health, Health, Care and Prevention Group / NHS Wales Chief Executive 

here.

Individual action

We encourage all BDA members to bring this issue to the attention of their local member of parliament. Some suggested wording to use is

here.

For members of the public

We recognise that reading this letter may be upsetting for members of the public living with ARFID/selective eating, or their loved ones, who are concerned about their lack of support for this issue, and want to reassure them that although serious consequences of ARFID/selective eating do exist and seem to be increasing, they are still thankfully uncommon. Please contact your main healthcare provider (e.g., GP or consultant) if you feel you need additional support. We note that UK NHS providers and service commissioners invite patient feedback on gaps in their provision, usually via a phone number or an online form on their websites. Additionally, NHS England encourages members of the public to report any patient safety incidents, whether or not they result in harm, to their LFPSE (Learning from Patient Safety Events) service via an easy, anonymous online form at https://www.england.nhs.uk/patient-safety/patient-safety-insight/learning-from-patient-safety-events/report-patient-safety-incident/.