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Investigation and inquest
On 20ᵗʰ December 2021, I commenced an investigation into the death of Alfie Anthony Kevin Nicholls. The investigation concluded on the 12ᵗʰ January 2024 and the conclusion was one of Narrative: Died suddenly where his death was contributed to by malnutrition which was caused by a severely restricted diet and where the level of malnutrition and the consequential risk it posed was not recognised by professionals until after his death.
The medical cause of death was 1a) Sudden death in child with features of malnutrition on a background of developmental delay and an autistic spectrum disorder
Circumstances of the death
Alfie Anthony Kevin Nicholls was a child with autism who was in full time education at a special school and was under the care of the child development unit. He was also known to children’s services, and there was an allocated social worker to support him and his family. As a consequence of his autism and sensory issues, Alfie had a difficult relationship with food and a restricted diet from a young age. Following him starting school, his diet became increasingly more restricted. Health, Education and Social Services professionals involved in his care did not communicate effectively between themselves or with his family about his diet and so did not have a clear understanding of how severely restricted his diet had become and how extremely limited it was in nutritional value. The risk that his nutritionally poor diet could present to his physical health was not understood or recognised by professionals involved in his care.
On 17ᵗʰ December 2021, he collapsed at his home address and was taken to Stepping Hill Hospital. Attempts to resuscitate him were unsuccessful and he died at Stepping Hill Hospital on 17ᵗʰ December 2021. A post-mortem examination found evidence of significant malnutrition caused, on the balance of probabilities, by his severely restricted diet, that on the balance of probabilities, contributed to his collapse and death on 17ᵗʰ December 2021
Coroner’s concerns
1. The inquest heard evidence that Avoidant Restrictive Food Intake Disorder (ARFID) was not widely understood by those involved with children and adults who may be impacted by it. That included a lack of awareness of what it was and how to approach it amongst Health, Education and Social Work professionals. The inquest was told that until awareness of it improved then similar situations to that of Alfie could go unrecognised with similar consequences.
2. Evidence before the Inquest was that in addition to there being increased awareness amongst professionals there needed to be strategies within and across Health, Education and Social care to ensure effective strategies were put in place and those with ARFID or at risk of developing ARFID were identified and managed effectively.
3. A feature of the evidence before the Inquest was a normalisation of poor and restricted eating by children with autism. This meant that the impact on their overall health and wellbeing was not considered. Children with autism were measured against each other in relation to their eating with phrases such as “we have children with poorer diets …” being used.
4. Whilst there was an Education, Health and Care Plan (EHCP) in place for Alfie there was little evidence that EHCPs were being used as a holistic tool to understand the inter relationship between health and education. There was evidence that those writing EHCPs needed to consider a child more holistically for the EHCP to cover all the aspects that it was meant to cover and not just to focus on education.
5. The Inquest heard that the school nurse service could play a vital role in identifying health issues and supporting other professionals. This key role was significantly impacted by the high demand on the service and the very high caseloads school nurses working with complex children were being asked to carry nationally.
6. The role of a dietitian in supporting children with eating disorders could be fundamental in maximising the nutritional value of what they consumed. Demands on the service and a limited understanding of how they could work to support children with disorders such as ARFID (nationally) meant that there was rarely regular input from dieticians.
7. ARFID, the Inquest was told, could lead to medical emergencies in eating disorders (MEED). The evidence given at the Inquest was that whilst this concept had been the subject of guidance amongst Psychiatrists it had been less publicised and there had been far less guidance by other Royal Colleges. In particular the Inquest was told that MEED needed to be far better understood by medical professionals in acute settings such as Emergency Departments and Paediatrics to avoid a situation where the impact of ARFID and the medical risk it posed was not understood until it was too late.
Information checked against the published report and official responses