Prevention of Future Deaths reports · 2021
Regulation 28 report to prevent future deaths, reference 2021-0391, written 7 May 2021. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.
| Date of report | 7 May 2021 |
|---|---|
| Reference | 2021-0391 |
| Deceased | Owen Hinds |
| Coroner | Laurinder Bower |
| Coroner area | Nottingham City and Nottinghamshire |
| Category | Community health care · Other related deaths |
| Source | judiciary.uk record · original PDF |
| Responses published | 1 |
Text extracted from the PDF text layer. Reproduced verbatim, including the scan's own layout.
Regulation 28: REPORT TO PREVENT FUTURE DEATHS (1) NOTE: This from is to be used after an inquest. REGULATION 28 REPORT TO PREVENT DEATHS THIS REPORT IS BEING SENT TO: 1 Nottingham and Nottinghamshire Clinical Commissioning Group 1 CORONER I am Miss Laurinda Bower, HM Assistant Coroner, for the area of Nottingham City and Nottinghamshire 2 CORONER’S LEGAL POWERS I make this report under paragraph 7, Schedule 5, of the Coroners and Justice Act 2009 and regulations 28 and 29 of the Coroners (Investigations) Regulations 2013. 3 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 4 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 5 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). 6 ACTION SHOULD BE TAKEN In my opinion action should be taken to prevent future deaths and I believe you (and/or your organisation) have the power to take such action. 7 YOUR RESPONSE You are under a duty to respond to this report within 56 days of the date of this report, namely by 02 July 2021. I, the coroner, may extend the period. Your response must contain details of action taken or proposed to be taken, setting out the timetable for action. Otherwise you must explain why no action is proposed. 8 COPIES and PUBLICATION I have sent a copy of my report to the Chief Coroner and to the following Interested Persons …………………………………………………………………………………………………………………… I have also sent it to National Autistic Society …………………………………………………………………………………………………………………… who may find it useful or of interest. I am also under a duty to send the Chief Coroner a copy of your response. The Chief Coroner may publish either or both in a complete or redacted or summary form. He may send a copy of this report to any person who he believes may find it useful or of interest. You may make representations to me, the coroner, at the time of your response about the release or the publication of your response by the Chief Coroner. 9 Miss Laurinda Bower HM Assistant Coroner for Nottingham City and Nottinghamshire Dated: 7 May 2021
1 response published against this report on judiciary.uk. A response is a body's written reply to the coroner's concerns; publication is at the discretion of the Chief Coroner's office, so an absent response does not mean nobody replied.
Sir John Robinson House Sir John Robinson Way Arnold Nottingham NG5 6DA Date: 29 October 2021 Miss Bower Assistant Coroner Nottinghamshire 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 liaised with Nottinghamshire Healthcare Trust (NHT) to understand the circumstances surrounding this case and the clinical pathways for autistic individuals with ARFID. (CCG) have 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. Yours Sincerely, p.p. Associate Director of Commissioning, Contracting & Performance – Mental Health and Community Avoidant Restrictive Food Intake Disorder (ARFID) Pathway Development Action Plan Objective Actions Develop All Ages ARFID Pathway Review recommendations from regional CAMHS ARFID pilot and national work around ARFID Timescales (By When) Nov ‘21 Owner Commentary All Ages ARFID Task and Finish Group Awaiting publication of regional reports. Undertake review of clinical cases to understand current provision and service gaps Oct ‘21 Completed. Undertake needs assessment, including prevalence and impact of comorbidities such as ASD Undertake literature review and understand evidence base for the treatment of ARFID Review current service provision Engagement with children, young people and families affected by ARFID Develop preferred pathway with recommendations for service delivery Jan ‘22 Jan ‘22 Jan ‘22 Apr ‘22 Jun ‘22 Obtain approval of preferred pathway and resources Jul ‘22 Implementation of agreed pathway Monitor and evaluation of agreed pathway Undertake skills audit and training needs analysis across specialist and non-specialist services to identify training requirements Nov ‘22 Ongoing Apr ‘22 Explore development of expanded roles within primary care Mar ‘23 Develop workforce capability across the All Ages ARFID pathway and relevant support services All Ages ARFID Task and Finish Group Page 1 of 2 Explore with Health Education England (HEE) the development of workforce competencies around ARFID Expand LeDeR reviews to include autistic people Expand the learning from deaths mortality reviews to autistic people in addition to people with learning disabilities Develop Annual Health Checks for autistic people Identify themes from LeDeR reviews and embed processes to ensure that learning from deaths inform improvements in practice across the system Incorporate the learning from the Learning Disability Annual Health checks and develop Annual Health Checks for autistic people, in line with the NHS Long Term Plan, and to include specific physical health requirements relating to ARFID and incorporating learning from the Primary Care Learning Disability Nurses Mar ‘23 Mar ‘22 Oct ‘22 Learning Disability Mortality Review (LeDeR) Steering Group Mar ‘24 LD Annual Health Checks Group Page 2 of 2
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