Prevention of Future Deaths reports · 2023
Regulation 28 report to prevent future deaths, reference 2023-0395, written 17 Oct 2023. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.
| Date of report | 17 Oct 2023 |
|---|---|
| Reference | 2023-0395 |
| Deceased | Tyler Ryan |
| Coroner | Carly Henley |
| Coroner area | Newcastle upon Tyne and North Tyneside |
| Category | Child Death (from 2015) |
| Source | judiciary.uk record · original PDF |
| Responses published | 3 |
Text extracted from the PDF text layer. Reproduced verbatim, including the scan's own layout.
ANNEX A
REGULATION 28: REPORT TO PREVENT FUTURE DEATHS (1)
NOTE: This form is to be used after an inquest.
REGULATION 28 REPORT TO PREVENT FUTURE DEATHS
THIS REPORT IS BEING SENT TO:
1. NHS England
2. The Rt Honourable Steve Barclay MP, Secretary of State for
Health and Social Care
3. The Royal College of Pathologists
4. The General Medical Council
1 CORONER
I am Carly Elizabeth Henley, Assistant Coroner, for the coroner areas of
Newcastle upon Tyne and North Tyneside.
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 26th April 2022 the Senior Coroner opened an inquest into the death of
Tyler Jay Ryan.
On 17th October 2023 I resumed and concluded the inquest.
4 CIRCUMSTANCES OF THE DEATH
Tyler Jay Ryan (born 02.09.2009) died at the Royal Victoria Infirmary,
Newcastle upon Tyne on 12.02.2021 aged 11 years old.
Tyler had been found in his bedroom at his home address in a collapsed state
by his mother on the morning of 12th February 2021. Police, Paramedics and
the Great North Air Ambulance Service attended at the home address and
attempted to resuscitate him. He remained asystole. He was conveyed to the
RVI, Newcastle by Air Ambulance. Sadly, his death was pronounced after
prolonged attempts to resuscitate him.
, Consultant
Post Mortem examination was carried out by
Perinatal and Paediatric Pathologist at the RVI on 17th February 2021. His
report was filed on 20th December 2021, over 10 months later. He concluded
1
that the death was due to 1a) Acute Anaphylactic Shock. The family did not
accept this conclusion on the basis that Tyler had no known medical history of
allergies and no agent was identified to have triggered this reaction. The family
contended that there must have been an undiagnosed and potentially
hereditary underlying condition. Tyler had four surviving siblings and the family
were concerned that they too may be at risk of sudden fatal collapse.
HM Senior Coroner for Newcastle instructed
,
Consultant Paediatric Histopathologist to report as an independent expert. Her
report is dated 15th August 2022. In her opinion, Tyler died of Sudden
Unexpected Death in Childhood. She recommended that an analysis of Tyler’s
tissue samples should be conducted to explore whether Tyler had an underlying
genetic condition which may have caused an arrhythmia.
Genetic testing, via molecular autopsy, subsequently confirmed that Tyler had
two variants in the gene RYR2. The scientific evidence strongly suggests that
these variants are pathogenic and therefore expected to cause human disease.
The RYR2 gene is known to be associated with a rare genetic condition, type 1
catecholaminergic polymorphic ventricular tachycardia “CPVT”. This condition
can lead to the development of a potentially dangerous heart rhythm
disturbance called Ventricular Tachycardia “VT”, usually when exercising or
under conditions of stress or emotional arousal. VT can degenerate to
Ventricular Fibrillation “VF”. VF is lethal if it is not corrected by defibrillation.
CPVT is a cause of sudden death in children and young adults with a mortality
rate of up to 50% by the age of 30 years old if left undiagnosed and untreated.
It is possible that Tyler’s siblings may have inherited this condition.
Having heard the evidence, I concluded that Tyler died of Sudden Unexpected
Death in Childhood.
5 CORONER’S CONCERNS
During the inquest the evidence revealed matters giving rise to concern. In my
opinion there is a risk that future deaths will occur unless action is taken. In
the circumstances it is my statutory duty to report to you.
The MATTERS OF CONCERN are as follows. –
1.
and
each gave evidence that the
delay in Paediatric Pathology reports is due to a chronic shortage in
recruitment and retention of Paediatric Pathologists in the UK. This
shortage is systemic. Currently only 50 out of 80 national vacancies
for Paediatric Pathologists are filled. Coronial and Forensic work is
undertaken by these Pathologists on a private basis, in addition to
their NHS work. This provides insufficient time to carry out this work in
a timely fashion. There is an acute shortage of Subspeciality
2
Paediatric Pathologists, with just one Paediatric Orthopedic
Pathologist undertaking Forensic and Coronial work in the UK.
2. The delay in Paediatric Pathology Reports results in the delayed
detection of the need for genetic testing amongst surviving siblings of
children who die of Sudden Death in Childhood. Currently, it is not
until the Pathologist provides a report that the need for genetic testing
is identified. Reports can take up to two years to be filed.
3.
and
gave evidence that more
widespread use of molecular autopsy would assist in detecting genetic
abnormalities in children who have died suddenly, leading to greater
opportunities to prevent future deaths within their families and in other
families.
4.
, Consultant Clinical Geneticist gave evidence that
Tyler is, to date, the only human in history to have been found to have
these two RYR2 variants which is significant to his family and to the
wider scientific community. Greater use of molecular autopsy would
save lives within families and in other families. The detection of these
variants is directly relevant to others and the prevention of future
deaths.
5.
gave evidence that the development of the use of
molecular autopsy calls for a revision of the SUDIC Protocol also
known as the Kennedy Protocol.
6
ACTION SHOULD BE TAKEN
In my opinion action should be taken to prevent future deaths and I believe
your organisation has 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 12th December 2023. 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:
Tyler’s family
I am also under a duty to send the Chief Coroner a copy of your response.
3
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
17.10.2023 C E HENLEY
4
3 responses 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.
From Maria Caulfield MP Parliamentary Under-Secretary of State for Mental Health and Women's Health Strategy Department of Health and Social Care 39 Victoria Street London SW1H 0EU Carly Elizabeth Henley Assistant Coroner Newcastle upon Tyne and North Tyneside Coroner’s office Lower Ground Floor Block 1 Civic Centre Barras Bridge Newcastle upon Tyne NE1 8QH 13 May 2024 Dear Miss Carly Elizabeth Henley, Thank you for your Regulation 28 report to prevent future deaths dated 17th October 2023 about the death of Tyler Jay Ryan. I am replying as Minister with responsibility for Minister for Mental Health and Women’s Health Strategy. Firstly, I would like to say how saddened I was to read of the circumstances of Tyler, and I offer my sincere condolences to their family and loved ones. The circumstances your report describes are concerning and I am grateful to you for bringing these matters to my attention. Please accept my sincere apologies for the significant delay in responding to this matter. The report raises concerns over workforce capacity, genetic screening (particularly in relation to molecular autopsies), and issues surrounding sudden death in childhood, all of which are matters I take extremely seriously. In preparing this response, Departmental officials have made enquiries with NHS England and will continue to discuss these important issues with NHS England counterparts. Workforce The NHS Long Term Workforce Plan LTWP) published by NHS England in June 2023 sets out the steps the NHS and its partners need to take to deliver an NHS workforce that meets the changing needs of the population over the next 15 years. The plan outlines the action needed to ensure we train and retain more staff, and reform medical education and training to put the NHS workforce on a sustainable footing for the future. Genetic screening NHS England (NHSE) has published guidance for inherited cardiac conditions which requires services to investigate patients with previously undiagnosed cardiac disease, suggestive symptoms or from families with sudden unexplained deaths. Where a genetic variation is identified, cascade testing is offered to relatives based on risk. NHS England has undertaken a formal assessment and continues to review evidence for the potential merits of using genetic testing for certain heart conditions and heart disease through the National Genomic Test Directory. A robust and evidence-based process and policy is in place to ensure that genomic testing continues to be available for all patients for whom it would be of clinical benefit. Genomic testing in the NHS in England is delivered through a national genomic testing network of seven NHS Genomic Laboratory Hubs (GLHs). The NHS GLHs deliver the testing outlined in the National Genomic Test Directory (the Test Directory) available here: NHS England » National genomic test directory, which sets out the eligibility criteria for patients to access testing as well as the genomic targets to be tested and the method that should be used, and is applicable nationally providing a standardised approach. The Test Directory currently includes 357 rare and inherited disease clinical indications (covering around 3200 rare diseases) and over 203 cancer clinical indications. The Test Directory is regularly updated to reflect the latest scientific and technological developments, including new clinical indications for rare disease, for example during the most recent update in October 2022, which included 150 changes to the directory. Seven NHS Genomic Medicine Service (GMS) Alliances also play an important role in supporting the strategic systematic embedding of genomic medicine in end-to-end clinical pathways and clinical specialities, as well as raising awareness among clinicians and the public of the genomic testing available through the NHS. The NHS GMS Alliances are supporting several national and local transformation projects, including a national project with the NHS Inherited Cardiac Conditions services, British Heart Foundation and the country’s coroners, who carry out inquests into sudden and unexplained deaths. The project will test DNA of people who died suddenly and unexpectedly at a young age from a cardiac arrest. Their surviving family can then also be offered genetic testing to see if they carry the same gene changes. Sudden death in childhood Research is on-going in many of the causes of Sudden Cardiac Death. There is an opportunity now with the implementation of Genomic Laboratory Hubs across England to explore the systematic introduction of post-mortem genetic testing. In 2020 NHS England and the British Heart foundation launched the NHS-Coronial-Sudden Unexpected Death pilot, including the causes of SAD across 7 sites to develop the pathways necessary to ensure equitable access to a genomics driven clinical programme. I hope this response is helpful. Thank you for bringing these concerns to my attention. Best Wishes, MARIA CAULFIELD
8 December 2023 Miss C E Henley Assistant Coroner Newcastle Upon Tyne and North Tyneside Dear Miss Henley Preventing future death report (Tyler Ryan), coroner case reference: We share your concern about the shortage of paediatric pathologists. We recognise the significance of this issue in light of the tragic circumstances of Tyler Jay Ryan’s untimely death, and especially the concerns of his family. You have asked us to set out the actions we will take to address the concern you have raised, or to explain why we do not propose to take action. GMC’s role The GMC, as the statutory regulator for the medical profession, does not have a direct role in the recruitment or retention of doctors across any specialty in the UK. This is exclusively a matter for the NHS in each of the four UK countries. Similarly, although we have responsibility for the oversight of postgraduate medical training, we have no role in determining how many doctors are trained in any specialty or subspecialty. These numbers are set by each of the UK governments in conjunction with the NHS in each of the countries. We’re not therefore in a position to take specific action to secure numbers of doctor in this speciality, or in any others. However, we do have responsibility for the registration processes through which suitably qualified doctors obtain the legal right to practise in the UK, or (in the case of specialist registration) demonstrate that they have completed specialist training across all recognised specialties. How effective we are at managing those processes clearly does have a direct bearing on the how readily the UK workforce can attract and absorb the doctors required to meet ever-increasing and more complex service needs. We’re committed, as a matter of priority, to making our registration pathways as flexible and accessible as we can for all those doctors who meet the required standards to join and remain in the UK medical workforce. Specialist registration Particularly relevant here, perhaps, is the work we’re doing to make specialist registration more accessible to those who are suitably qualified, but who have not completed an approved training course in the UK. We have long sought, and have now obtained, a change to our legislation to make it less prescriptive about the evidence requirements to support an application for specialist The GMC is a charity registered in England and Wales (1089278) and Scotland (SC037750) recognition. Our further ambition is to develop and implement a number of new pathways to the specialist register. In doing so, we’ll aim to widen access to potential applicants by offering a range of options and mechanisms through which they can demonstrate they have the required knowledge, skills and experience to practise at consultant level in the NHS. Doctors trained outside the UK We particularly value the contribution that overseas-trained doctors make to the UK medical workforce, and we registered over 14,000 international medical graduates last year. Our own recent research – published in The state of medical education and practice workforce report 2023 – clearly shows the crucial part they play, and are likely to continue playing, in ensuring a sustainable workforce in UK healthcare. In recent years we’ve invested in additional facilities and people to offer a record number of places in both parts of the Professional and Linguistic Assessments Board (PLAB) test, which is the means by which many international medical graduates can demonstrate their knowledge and skills for registration purposes. In 2022 over 14,000 doctors sat PLAB 1 and over 13,500 doctors sat PLAB 2, which were significant increases compared to previous years. The number of places this year is around 23,000 for PLAB 1 and and 16,000 places for PLAB 2 respectively. Beyond that, we also have number of programmes underway aimed at streamlining our registration processes. I recognise that none of this amounts to assurance about specific vacancies being filled. But I hope it shows our ongoing commitment to providing effective channels into the UK medical workforce. UK medical graduates With regard to UK medical students and graduates, there may be some work to do – perhaps by the medical schools, the NHS and the Royal College of Pathologists – in promoting careers in pathology and related sub-specialities. The data we have collected shows that there has been an increase of 29% of trainees in pathology programmes between 2018 and 2022. This appears quite encouraging and suggests that the broad field at least is of interest to junior doctors. I hope this is helpful, and I will of course be happy to provide any further information or clarifications you may need. Yours sincerely Director Registration and Revalidation gmc-uk.org 2
Carly Elizabeth Henley
Assistant Coroner
Newcastle upon Tyne and North Tyneside
Lord Mayor’s Suite
Civic Centre
Barras Bridge
Newcastle upon Tyne
NE1 8QH
National Medical Director
NHS England
Wellington House
133-155 Waterloo Road
London
SE1 8UG
19 December 2023
Dear Coroner,
Re: Regulation 28 Report to Prevent Future Deaths – Tyler Jay Ryan who died
on 12 February 2021.
Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 17
October 2023 concerning the death of Tyler Jay Ryan on 12 February 2021. In
advance of responding to the specific concerns raised in your Report, I would like to
express my deep condolences to Tyler’s family and loved ones. NHS England are
keen to assure the family and the coroner that the concerns raised about Tyler’s care
have been listened to and reflected upon.
I am grateful for the further time granted to respond to your Report, and I apologise for
any anguish this delay may have caused to Tyler’s family or friends. I realise that
responses to Coroner Reports can form part of the important process of family and
friends coming to terms with what has happened to their loved ones and appreciate
this will have been an incredibly difficult time for them.
In your Report you raise a concern over the shortage of Paediatric Pathologists and
the delays that this can cause to Paediatric Pathology reports. The shortage of
paediatric and perinatal pathologists and the impact it has on services has been of
concern for some time. This issue has been the subject of a great deal of activity
relating to attracting pathologists into higher specialist training in this area with the
implementation of recruitment incentives (one-off payments of £20,000) as well as
supporting learning via e-learning resources. Work is also ongoing with NHS
England’s Children and Young People’s Team, the Pathology Team and the
Workforce Training and Education Directorate, as well as professional bodies such as
the Royal College of Pathologists (RCPath) and the Institute of Biomedical Science
(IBMS) to develop a curriculum for placental pathology reporting for biomedical
scientist advance practice to supplement the stretched workforce. There isn’t a
timeline for this at the moment but we are happy to update the coroner once further
progress has been made.
Guidance on autopsy in children is issued by the RCPath and will cover the need for
genetic analysis where indicated. I note that you have also issued your Report to the
RCPath and they would be the appropriate organisation to provide comment on your
concerns touching on molecular autopsy.
In your Report you also reference the Kennedy Guidance and the need for a revision
of the Sudden Unexpected Death In Children (SUDIC) protocol. The guidance was
published in November 2016 and was developed by the RCPath in collaboration with
the Royal College of Paediatrics and Child Health (RCPCH). NHS England will be
raising the issue of the revision with the Royal Colleges and the relevant government
departments.
I would also like to provide further assurances on national NHS England work taking
place around the Reports to Prevent Future Deaths. All reports received are discussed
by the Regulation 28 Working Group, comprising Regional Medical Directors, and
other clinical and quality colleagues from across the regions. This ensures that key
learnings and insights around preventable deaths are shared across the NHS at both
a national and regional level and helps us pay close attention to any emerging trends
that may require further review and action.
Thank you for bringing these important patient safety issues to my attention and please
do not hesitate to contact me should you need any further information.
Yours sincerely,
National Medical Director
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