Tyler Ryan

Coroner's concerns

AI summary

A chronic national shortage of Paediatric Pathologists causes significant delays in reports, hindering timely genetic testing for families and preventing future deaths. Greater use of molecular autopsy is needed.

View full 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. 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 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.

Responses

3 respondents

NHS England NHS / Health Body

17 Oct 2023 PDF

Action Planned

NHS England acknowledges concerns about the shortage of Paediatric Pathologists and delays to reports. They describe recruitment incentives and development of a curriculum for placental pathology reporting, but provide no timeline. They will raise the SUDIC protocol revision with the Royal Colleges and relevant government departments. (AI summary)

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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 National Medical Director NHS England Wellington House 133-155 Waterloo Road London SE1 8UG

19 December 2023

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.

GMC Regulator / Inspectorate

8 Dec 2023 PDF

Noted

The GMC acknowledges the concern about the shortage of paediatric pathologists but states it does not have a direct role in recruitment or determining training numbers. They outline their role in registration processes and efforts to streamline these for overseas-trained doctors. (AI summary)

View full response

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

gmc-uk.org 2

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.

Department of Health and Social Care Central Government

13 May 2024 PDF

Action Planned

The Department of Health and Social Care acknowledges concerns over workforce capacity, genetic screening, and sudden death in childhood, noting that NHS England is working on these issues. They mention the NHS Long Term Workforce Plan, the NHS Genomic Medicine Service, and the NHS-Coronial-Sudden Unexpected Death pilot. (AI summary)

View full response

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

Report sections

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.

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.

Post Mortem examination was carried out by , Consultant 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 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.

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