Source · Prevention of Future Deaths

Owen Hinds

Ref: 2021-0391 Date: 7 May 2021 Coroner: Laurinder Bower Area: Nottingham City and Nottinghamshire Responses identified: 1 / 1 View PDF

A significant service gap exists for Autistic Spectrum Disorder patients needing long-term dietetic support for ARFID, as no specialist service is commissioned, causing patients to fall between existing care criteria.

Date 7 May 2021

56-day deadline 2 Jul 2021

Responses identified 1 of 1

Community health care and emergency services related deaths Other related deaths

Coroner's concerns

AI summary

View full coroner's concerns

The MATTERS OF CONCERNS are as follows:

1. There is no specialist service commissioned to provide ASD patients with long term dietetic support for ARFID symptoms, despite the increasingly prevalence of ARFID diagnosis.

At the time of the inquest, I was informed that Owen did not meet the criteria for support from any of the Dietetic services.

The Nottingham City Autism Service (NCAS) went above and beyond their remit in co-ordinating support from his GP. The service is commissioned to provide diagnostic and short term post-diagnostic intervention, yet they worked with Owen (as they do with many other patients) for years in order to bridge the gap in service provision. However, they could not provide the sustained ARFID support that Owen required.

Owen did not meet the criteria for support from the Eating Disorder Service or Dietetic Services (on account of his diet concerns being linked to his ASD) or Primary Care Learning Disability Nurse (as Owen did not have an intellectual impairment).

Responses

1 respondent

Nottingham and Nottinghamshire CCG Integrated Care Board

29 Oct 2021 PDF

Action Planned

The CCG plans to develop an all-age pathway for ARFID patients, including those with ASD, through a working group, patient engagement, and service transformation. They outline a timeline of activities including needs assessment, literature review, pathway development, and workforce training. (AI summary)

View full response

Dear Miss Bower Re: Regulation 28 – Report to Prevent Future Deaths I am writing to provide you with a response to the above Regulation 28 report, dated 7 May 2021, in which you raised concerns that there is no specialist service commissioned to provide Autistic Spectrum Disorder (ASD) patients with long-term dietetic support for symptoms of Avoidant Restrictive Food Intake Disorder (ARFID). NHS Nottingham and Nottinghamshire Clinical Commissioning Group (CCG) have liaised with Nottinghamshire Healthcare Trust (NHT) to understand the circumstances surrounding this case and the clinical pathways for autistic individuals with ARFID. As a system we have developed an overarching action plan which describes our intention to develop an all- age pathway for individuals who are affected by ARFID. This pathway will ensure we are able to meet the needs of ARFID patients who are neurotypical and those who are autistic or who have other comorbidities. To ensure pathways and services are patient centred we will undertake engagement with individuals and families whose lives have been affected by ARFID within childhood and adulthood. An All Ages ARFID working group will be established to lead the pathway development work and engagement, with this being complemented by a broader service transformation programme which aims to improve the lives of individuals with Learning Disabilities and/or Autism. The Nottingham and Nottinghamshire Integrated Care System (ICS) Mental Health and Social Care Partnership Board will oversee delivery of this work. I hope the above, together with the action plan, provides you with assurance of our commitment to addressing the issues you have raised and am happy to provide regular updates regarding how this work is progressing. Please let me know if you require any further information.

Report sections

Investigation and inquest

On Twenty-Fifth March 2020 I commenced an investigation into the death of Owen Joseph HINDS, aged 26. The investigation concluded at the end of the inquest on 29 January 2021. The conclusion of the inquest was:

I a Systemic Inflammatory Response Syndrome I b Bronchopneumonia I c II Cirrhosis & Non-Alcoholic Fatty Liver Disease, Congestive Cardiac Failure, Obesity & Nutritional Impairment, Low Albumin, Autism

Circumstances of the death

Owen Joseph Hinds was a young man with Autism without Learning Disability (formerly known as Asperger's Syndrome).

His Autism led him to follow a restricted diet (which would likely now be diagnosed as ARFID - Avoidance Restrictive Food Intake Disorder).

His restricted diet led to chronic nutritional deficiency and obesity.

Professionals worked with Owen on psychological and behavioural strategies to improve his diet. There was limited sustained improvement, but it was felt that Owen retained capacity to decide what to eat and drink.

His physical health was monitored in primary care in accordance with his wishes, as he was felt to have capacity to consent to healthcare observations and frequently exercised his right to decline observations.

Sadly, Owen's lifestyle probably led to the development of chronic liver disease and a degree of heart failure. These conditions were not detected or diagnosed in life, despite monitoring, and probably contributed to his death from an overwhelming chest infection on 28 February 2020, at the Queen's Medical Centre, Nottingham.

Owen's Autism was the root cause of his tragic and untimely death because it prevented him from accessing the medical assistance that he required. There is no specialist service commissioned to provide ASD patients with long term dietetic support, and I heard this is what Owen needed

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Report details

Reference: 2021-0391
Date of report: 7 May 2021
Coroner: Laurinder Bower
Coroner area: Nottingham City and Nottinghamshire

Responses identified

Responses identified 1 of 1

All listed responses identified

Organisations named in PFD reports are normally expected to respond within 56 days. Deadline: 2 Jul 2021.

Sent to

Nottingham and Nottinghamshire Clinical Commissioning Group

Source links

Judiciary.uk page → Report PDF →

Data: judiciary.uk under OGL.