Adam Ankers

Dear Mr Sinclair, Regulation 28, Prevention of Future Deaths response from BSGM regarding Adam Ankers Following an inquest into the death of Adam Ankers who died from a cardiac arrest on 9th March 2026, the coroner issued a Regulation 28 report to prevent future deaths. Adam Ankers had an inherited cardiac condition (ARVC) which had not been identified at the time of his death. The British Society of Genetic Medicine was asked to respond to Point E: That cascade communication of genetic or hereditary diseases is imperfect and does not reach more than half of those in families that need to know about it. British Society of Genetic Medicine - BSGM BSGM is a registered charity ( ) that provides a forum for a wide spectrum of clinical, laboratory and researchers involved in genetics and genomics both in clinical service and research. BSGM’s objectives include a) the promotion, encouragement and advancement of the study and practice of clinical genetics and genomics. b) the advancement of education, research and innovation in clinical genetics and

genomics c) the promotion of public awareness of genetics and genomics as they relate to health and disease d) the support of the professions contributing to applications of genetics and genomics in the health care systems of the United Kingdom e) the making available of informed opinion on issues of public interest in relation to genetics and genomics While many members of BSGM sit in positions of leadership within clinical genetics services and work within cardiac genetic services, it has no remit to implement service change but rather to influence how services are delivered. The Joint Committee on Genomics in Medicine (JCGM) is a joint committee of BSGM, Royal College of Physicians, Royal College of Pathologists. In 2019, JCGM released the 3rd edition of the guidance document ‘Consent and confidentiality in genomic medicine’ .This was written by , who has given evidence in this inquest, and . Many of the principles in practice within specialist clinical genetics and genomic practice are supported by the principles of this document. Genetic testing is now more embedded in clinical practice outside of the specialist genetics workforce. There are many educational activities underway to equip non genetics specialists to deliver their specific element of genetic medicine, for example by giving patients information about their genetic risk and by requesting genetic testing, giving the result and explaining the implications to the wider family. The principles of the ‘Consent and confidentiality in genomic medicine’ document underpin much of this education. Despite this, we acknowledge that the sharing and dissemination of genetic information within families may not be easy and is influenced by the complexities of family structures and dynamics as well as systemic constraints. Efforts are made to encourage and facilitate timely sharing of information and cascade testing in families. Barriers to this include limited service capacity, variable infrastructure and jurisdictional or cross border regulatory frameworks that restrict if, how and when clinical teams can contact or offer testing to at risk relatives directly. We note from the Regulation 28 Report that the proband (index case) in this family was Adam’s paternal grandmother’s cousin who had been diagnosed with ARVC. Genetic testing identified a variant which enabled genetic testing for other family members. A letter with important information was written by a genetic counsellor for dissemination to the family. This information was received by Adam’s grandmother but no testing had been undertaken in this branch of the family, including Adam. The information was passed onto a cardiologist by his grandmother who attempted to make

an appointment to address this, but no appointment was made in error. This was not followed up either by the family or the cardiologist. BSGM’s role in this situation is to raise awareness of the need to share important information about genetic diagnosis and the results of genomic tests. BSGM will also contribute to documents such as ‘Consent and confidentiality in genomic medicine’ and to help in its dissemination. BSGM through its members can also help to influence service development in both specialist genetic services and also in more mainstreamed genetic medicine. Work is currently ongoing by NHS England to review the service specification for the Clinical Genomics Services and the working group involved in this work includes many BSGM or its contributory groups (Clinical Genetics Society and Association of Genetic Nurses and Counsellors) officers. It is of note that there is work ongoing nationally, funded by British Heart Foundation (BHF), to embed genetic testing recommendations into Coronial pathways following sudden unexplained death. A more sustainable funding model for this important work would be extremely valuable for families with ARVC where a sudden death occurs. I have enclosed a copy of the ‘Consent and confidentiality in genomic medicine’ document for your information. Please do not hesitate to get in touch if you would like further information.

Dear Mr Sinclair,

Regulation 28, Prevention of Future Deaths response from BSGM regarding Adam Ankers Following an inquest into the death of Adam Ankers who died from a cardiac arrest on 9th March 2026, the coroner issued a Regulation 28 report to prevent future deaths. Adam Ankers had an inherited cardiac condition (ARVC) which had not been identified at the time of his death. The British Society of Genetic Medicine was asked to respond to Point E: That cascade communication of genetic or hereditary diseases is imperfect and does not reach more than half of those in families that need to know about it. British Society of Genetic Medicine - BSGM BSGM is a registered charity (No: 1058821) that provides a forum for a wide spectrum of clinical, laboratory and researchers involved in genetics and genomics both in clinical service and research. BSGM’s objectives include a) the promotion, encouragement and advancement of the study and practice of clinical genetics and genomics. b) the advancement of education, research and innovation in clinical genetics and

genomics c) the promotion of public awareness of genetics and genomics as they relate to health and disease d) the support of the professions contributing to applications of genetics and genomics in the health care systems of the United Kingdom e) the making available of informed opinion on issues of public interest in relation to genetics and genomics

While many members of BSGM sit in positions of leadership within clinical genetics services and work within cardiac genetic services, it has no remit to implement service change but rather to influence how services are delivered. The Joint Committee on Genomics in Medicine (JCGM) is a joint committee of BSGM, Royal College of Physicians, Royal College of Pathologists. In 2019, JCGM released the 3rd edition of the guidance document ‘Consent and confidentiality in genomic medicine’ .This was written by who has given evidence in this inquest, and . Many of the principles in practice within specialist clinical genetics and genomic practice are supported by the principles of this document. Genetic testing is now more embedded in clinical practice outside of the specialist genetics workforce. There are many educational activities underway to equip non genetics specialists to deliver their specific element of genetic medicine, for example by giving patients information about their genetic risk and by requesting genetic testing, giving the result and explaining the implications to the wider family. The principles of the ‘Consent and confidentiality in genomic medicine’ document underpin much of this education. Despite this, we acknowledge that the sharing and dissemination of genetic information within families may not be easy and is influenced by the complexities of family structures and dynamics as well as systemic constraints. Efforts are made to encourage and facilitate timely sharing of information and cascade testing in families. Barriers to this include limited service capacity, variable infrastructure and jurisdictional or cross border regulatory frameworks that restrict if, how and when clinical teams can contact or offer testing to at risk relatives directly. We note from the Regulation 28 Report that the proband (index case) in this family was Adam’s paternal grandmother’s cousin who had been diagnosed with ARVC. Genetic testing identified a variant which enabled genetic testing for other family members. A letter with important information was written by a genetic counsellor for dissemination to the family. This information was received by Adam’s grandmother but no testing had been undertaken in this branch of the family, including Adam. The information was passed onto a cardiologist by his grandmother who attempted to make

an appointment to address this, but no appointment was made in error. This was not followed up either by the family or the cardiologist. BSGM’s role in this situation is to raise awareness of the need to share important information about genetic diagnosis and the results of genomic tests. BSGM will also contribute to documents such as ‘Consent and confidentiality in genomic medicine’ and to help in its dissemination. BSGM through its members can also help to influence service development in both specialist genetic services and also in more mainstreamed genetic medicine. Work is currently ongoing by NHS England to review the service specification for the Clinical Genomics Services and the working group involved in this work includes many BSGM or its contributory groups (Clinical Genetics Society and Association of Genetic Nurses and Counsellors) officers. It is of note that there is work ongoing nationally, funded by British Heart Foundation (BHF), to embed genetic testing recommendations into Coronial pathways following sudden unexplained death. A more sustainable funding model for this important work would be extremely valuable for families with ARVC where a sudden death occurs. I have enclosed a copy of the ‘Consent and confidentiality in genomic medicine’ document for your information. Please do not hesitate to get in touch if you would like further information.

Dear Ms Charbit, Re: Regulation 28 Report to Prevent Future Deaths – Adam Ankers who died on 4 February 2024.

Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 14 April 2026 concerning the death of Adam Ankers on 4 February 2024. In advance of responding to the specific concerns raised in your Report, I would like to express my deep condolences to Adam’s family and loved ones. NHS England is keen to assure the family and yourself that the concerns raised about Adam’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 Adam’s family or friends. I realise that responses to Coroners’ Reports can form part of the important process of family and friends coming to terms with what has happened to their loved ones, and I appreciate this will have been an incredibly difficult time for them.

Your Report raises concerns to NHS England, regarding the following:
1. There are difficulties with lay people (trained or not), including ambulance call handlers, understanding the signs of agonal breathing or cardiac arrest.
2. There is a need for better understanding on the use of defibrillators, particularly by lay people and trained first aiders.
3. Cardiac screening is not available to all young people or young football players despite it reducing the risk of sudden cardiac death in those aged 14 and upwards.
4. Issues with the cascade of communication regarding genetic or hereditary disease means that it does not reach more than half of those within families that need to know about it.

Understanding the signs of agonal breathing or cardiac arrest by lay people

Ambulance Emergency Operation Centres (EOCs) use one of two approved triage tools to code and prioritise 999 emergency calls: MPDS or NHS Pathways. The international MPDS system is run commercially by Priority Dispatch Corp (PDC). NHS Pathways is owned by the Department of Health and Social Care and delivered by National Medical Director NHS England Wellington House 133-155 Waterloo Road London SE1 8UG

3rd July 2026

NHS England. It is up to individual ambulance services to decide which triage tool to use and to enter into a contractual agreement with the triage provider. The system providers determine and update the protocols, pathways and questions used. Call outcomes (dispositions) are mapped to contractual standards, with the outcomes then mapped to the five national response categories (categories 1-5) which are set out in the NHS Constitution and Ambulance Service 999 contracts. NHS England oversees how 999 calls are categorised, with decisions made through the Emergency Call Prioritisation Advisory Group (ECPAG). This helps to ensure consistent prioritisation across England and fair access to ambulance responses. All 999 call handlers are trained to identify breathing difficulties and altered consciousness at the start of the call. EOCs have established processes in place to dispatch quickly for life threatening conditions. Ambulance trusts use predefined ‘Nature of Call’ (NoC) phrases to rapidly identify presentations that are immediately life-threatening, even before formal triage commences. Training includes recognising cardiac arrest, assessing breathing and development of active listening and probing skills, which are essential throughout the call to gather information that is offered by the caller. NHS England recognises that identifying signs of agonal breathing or cardiac arrest can be challenging to identify over the phone. However, both MPDS and NHS Pathways use structured, scripted questions designed to prioritise the most serious symptoms first. Medical Priority Dispatch System (MPDS) MPDS supports call handlers to recognise ineffective or agonal breathing and possible cardiac arrest in several ways:
• MPDS prompts the call handler to establish if the patient is breathing. If the call handler is unsure, MPDS directs the call handler to treat the patient as not breathing until proven otherwise. This triggers a Category 1 response (the most urgent category of ambulance dispatch). At the same time, the call handler starts cardiopulmonary resuscitation (CPR) instructions and asks the caller to obtain the nearest defibrillator.
• Breathing described as ‘very faint’ is treated as ineffective breathing. This also triggers a Category 1 response although not CPR. In this case, Adam was triaged through ‘Protocol 12 Convulsions/Fitting’. A prolonged fit (over 10 minutes) is also recognised as one of the very most serious symptoms and so also results in a Category 1 response. If the fit has stopped, MPDS then uses a breathing verification diagnostic of checking the patient’s breathing rate with the caller’s assistance. If the interval between breaths is less than four seconds, breathing is deemed effective or normal.
• The call handler provides advice on maintaining the airway and rechecks the breathing regularly. Where breathing is slow (four to eight seconds between breaths), the diagnostic tool is used again with 60 seconds, and the caller is advised to get someone to obtain the nearest defibrillator.

• If the interval between breaths exceeds eight seconds, this is identified as agonal breathing and the call handler initiates CPR instructions and advises obtaining a defibrillator. Both slow and agonal breathing (as well as fitting for over 10 minutes) result in a Category 1 response. When a patient is identified as having ineffective breathing, agonal breathing, or not breathing at all, the call handler instructs the caller to begin CPR and apply defibrillator pads if available, providing guidance as necessary.

If a patient is reported as unconscious but not fitting, they are triaged under ‘Protocol 31 (unconscious/fainting (near))’. The initial question asks if the patient’s breathing is completely normal. Unless the answer is an unequivocal yes and the patient remains unconscious, a Category 1 response is again assigned, and CPR and defibrillator instructions are given. If breathing is confirmed as normal, the breathing verification diagnostic is still applied, and actions taken as described above. MPDS includes rules, guidance and laws to help call handlers recognise agonal breathing and cardiac arrest, including:
• A definition for ineffective and agonal breathing
• A rule recognising that fitting-like activity can be an initial sign of cardiac arrest
• Cardiac arrest is listed as a known cause of seizure
• Brock’s Law: The presence of an automated external defibrillators (AED) does not ensure its use; it is the call handler that does
• Aside from Protocol 12, all non-traumatic unconscious patients should be positioned flat on their back with the head tilted back to maintain the airway and avoid additional breathing difficulties
• For unconscious patients due to injury or trauma, they are not moved unless breathing is ineffective, uncertain, or agonal

NHS Pathways “NHS Pathways” is a Clinical Decision Support System (CDSS) manufactured by NHS England and used for remote clinical assessment (triage). In use since 2005, it underpins all NHS 111 services and more than half of England’s 999 telephony systems. The tool also supports online triage, in-person and enhanced clinical assessments via modules such as NHS Pathways Clinical Consultation Support (PaCCS). The safety of NHS Pathways’ triage outcomes - known as "dispositions" - is overseen by the National Clinical Assurance Group (NCAG), an independent intercollegiate body hosted by the Academy of Medical Royal Colleges (AoMRC). Alongside this external scrutiny, NHS England aligns NHS Pathways’ clinical content with up-to-date

national clinical guidance, including NICE (National Institute for Health and Care Excellence), UK Resuscitation Council and UK Sepsis Trust. The system supports over 2.5 million triage assessments each month across telephone, digital, and face-to-face settings. NHS Pathways triage follows a structured clinical hierarchy. Serious and potentially life-threatening symptoms are assessed first to ensure rapid escalation - such as dispatching an ambulance or involving a clinician. The assessment then progresses to less urgent symptoms, identifying the most appropriate level of care. The tool is not diagnostic. Instead, it works by systematically ruling out more serious causes of symptoms which would need the most urgent response first, to ensure safe, efficient triage. Relevant history is gathered where clinically necessary to minimise triage time while maintaining safety. In telephone settings, assessments are conducted by trained, non-clinical health advisors. These advisors complete a rigorous training programme and are, as a condition of the licence, supported at all times, by clinicians. If a case is complex or unclear, health advisors are required to escalate the case to clinical colleagues. It is a condition of the NHS Pathways licence is that clinical supervision and escalation support must be available 24/7. NHS England recognises that signs of agonal breathing or cardiac arrest can be challenging to identify in remote assessment settings. To reduce this difficulty as far as is possible the following measures have been taken: Design Safety Features:
• The NHS Pathways recognition of cardiac arrest, breathing assessment and life support advice has been developed in conjunction with the Resuscitation Council UK (RCUK) and the National Clinical Assurance Group (NCAG).
• The starting position for every call is an assessment to establish whether the patient is in cardiac arrest. The NHS Pathway is not a diagnostic tool but a system to ensure emergency calls are adequately triaged. NHS Pathways training makes it clear to call handlers that if a caller describes anything other than normal breathing or if there is any doubt, then it must be assumed that the patient is not breathing normally and start telephone CPR.
• The system is designed with a safety feature so that, where a caller is unsure whether a patient is breathing, triage includes a check to confirm whether the patient is breathing in and out normally. This means if a health advisor selects that they or the caller is ‘not sure’, then the system will take the safest option and, in this instance, manage the patient as if they are not breathing in and out normally.
• If a cardiac arrest is not declared at the onset of call or identified via the Nature of Call (NOC), the NHS Pathways system will subsequently support the health advisor to identify patients who are unconscious. For unconscious patients, breathing assessment is prompted. The breathing assessment aims to identify those who are not breathing or who are not breathing adequately (defined as one breath in every ten seconds). A Category 1 emergency ambulance

disposition will be reached, and life support advice delivered, for those with absent or inadequate breathing.
• For patients who are unconscious, but who have been identified to be breathing with an adequate rate (in and out evenly with a minimum of one breath every ten seconds), a further question presents to identify those whose breathing is noisy due to possible airway compromise. This population also receive a Category 1 emergency ambulance disposition
• If a health advisor receives responses suggesting the patient has stopped breathing in and out regularly, even after the initial assessment, then they are able and are trained to go back and change the answers within the system regarding breathing. If the patient becomes unconscious and was not breathing regularly, then the caller would receive advice as above relating to administering basic life support (BLS) and using an available AED.
• A breathing rate of less than one breath every 10 seconds is used as a measure of inadequate breathing as this is a more identifiable and objective marker in remote telephony triage than clinical descriptions of agonal breathing for assessment between a non-clinical health advisor and a member of the public. NHS Pathways introduced this measure in 2020 to support the identification of agonal breathing which was agreed in conjunction with the Resuscitation Council UK. NHS Pathways provides a comprehensive CPR training programme to health advisors and clinicians that supports the accurate and timely recognition of cardiac arrest, including cases where callers describe agonal breathing. As part of a CPR Toolkit, call handling staff receive structured cardiac arrest focused training, supported by audio clips of genuine agonal breathing and a range of example caller descriptions. NHS Pathways maintain a Hot Topic on agonal breathing, which is made available to all Providers to reinforce this crucial aspect of recognition. A “Hot Topic” is a short, focused NHS Pathways training resource used to reinforce key areas of triage practice across Providers.

A core feature of our existing training is the “No, No, Go” approach:
• Not conscious
• Not breathing normally → Start CPR immediately Call handling staff are taught that any uncertainty about normal breathing in a collapsed patient should be treated as potential cardiac arrest, and the NHS Pathways system is designed to support that approach by guiding staff rapidly toward CPR instructions including directions on early AED use. In addition, NHS Pathways supplies Providers with CPR call-level data, enabling them to review relevant calls and identify opportunities for focused local improvement. Additional measures have also been taken following learning from this case. In January 2025, NHS Pathways updated the triage so now anyone who collapses and becomes unconscious during exercise or sport, including those reported to be fitting,

would be presumed to be in cardiac arrest even if they seem to be breathing regularly. This update followed publication in the Resuscitation Council UK (RCUK) new best practice guidelines in December 2023, titled ‘Resuscitation on the field of play’. NHS England has informed Priority Dispatch Corporation (PDC) of this best practice guidance, and PDC is reviewing MPDS advice concerning the application of defibrillator pads to all unconscious patients after exercise or exertion. Following Adam’s death, NHS Pathways will enhance and reinforce the existing training by making specific reference to the circumstances and learning from this tragic event in both the next mandatory Release Training, which reaches all existing staff, and the CPR toolkit thus reaching future staff. Including reference to this case within our learning materials will ensure the lessons resonate as strongly as possible. This will be completed by 30th June 2026. NHS England will work with the MPDS and NHS Pathways coding sub-groups to consider whether further measures should be taken to help members of the public recognise the signs of agonal breathing or cardiac arrest.

Understanding the use of defibrillators, particularly by lay people and trained first aiders

NHS England recognises the importance of rapid access to defibrillation and early bystander intervention in improving survival from out-of-hospital cardiac arrest. Early defibrillation, alongside prompt CPR, is a critical determinant of survival and can significantly increase the likelihood of a positive outcome.

We acknowledge the concern raised regarding the need for improved understanding and confidence in the use of AEDs among both lay persons and those with first aid training.

AEDs are designed to be safe and simple to use, with clear audible and visual instructions guiding users throughout the process. National guidance emphasises that AEDs can be used without prior training; however, lack of confidence or awareness may act as a barrier to their timely use.

NHS England works with system partners, including ambulance services and the British Heart Foundation (BHF) particularly through support for The Circuit: the national defibrillator network (which NHS England part-funds in partnership with the BHF). This enables ambulance services to direct bystanders to the nearest registered defibrillator where available.

Ambulance service call handlers also play a key role in supporting bystanders by providing real-time instructions on CPR and directing them to a nearby registered AED.

NHS England does not directly mandate or deliver public first aid training. However, we recognise the importance of ensuring that NHS staff have appropriate resuscitation skills. As part of wider statutory and mandatory training reforms, consideration is being given to strengthening BLS and AED training requirements across NHS staff groups, including those in non-patient facing roles (subject to final policy confirmation).

We will continue to work with partners across the health system and wider community to support awareness, accessibility and appropriate use of defibrillators.

The use of AEDs should be part of the training of all first aid staff and training is widely available through a variety of organisations including St John’s Ambulance and the BHF. In this case, it appears that the first aiders did not recognise cardiac arrest and so did not start CPR. The BHF have campaigned prominently for more of the population to be trained in CPR and have provided online resources around this.

Cardiac screening availability

There has been no clear UK consensus on the benefits of screening of young people for participation in sport.

This topic is governed/decided by the National Screening Committee (NSC) and was last considered in 2019, at which point there was no UK consensus. It is due to be reviewed in 2026/27.

Communication about genetic or hereditary diseases Evidence shows that not everyone who inherits a gene change associated with arrhythmogenic right ventricular cardiomyopathy (ARVC) will develop ARVC. So, a person can have the gene but never develop the actual condition. This is called “reduced penetrance.” The lifetime penetrance of ARVC is 30% to 50%. There is also variation in the severity of the disease – so some people with the gene will only ever develop a more mild form of ARVC. The age that ARVC starts also varies between people even in a single family with ARVC. However, with some genetic subtypes of ARVC lifetime penetrance is much higher. There are 5 higher risk genetic subtypes, and so there is a lower threshold for using Implantable Cardioverter Defibrillator (ICD) in people with those subtypes. Penetrance is highly related to level of sporting/physical activity. Cascade communication and discussion about the option of genetic testing for the genetic change identified as causing ARVC in a family starts with close relatives or those considered at risk due to sporting activity and/or symptoms. Given the distant familial relationship between the individual in whom ARVC was initially diagnosed and Adam, it is likely that the Genetic Counsellor in Glasgow may not have known about Adam’s sporting history. NHS England have reviewed your concern that cascade communication of genetic/hereditary disease “does not reach more than half of those in families that need to know about it” but have been unable to locate the literature or evidence where this originated. Information sharing between family members of a particular genetic risk of a condition will be different for different conditions.

It is standard practice in Europe to cascade information about risk and testing options for genetic/hereditary conditions through family members. In other parts of the world (e.g. parts of Australia) a more proactive approach is taken by clinical services.

Currently, there is insufficient capacity and infrastructure for Clinical Genetics and/or specialist clinical services (e.g. Cardiology/Inherited Cardiac Conditions services) to actively contact family members outside of situations where a particularly high risk has been identified (e.g. individual potentially displaying symptoms and/or athlete undertaking intensive sporting activities at risk of ARVC). The Clinical Genetics service specification is currently being revised, and this will be considered as part of this work. This is an aspect of the clinical service where additional capacity and infrastructure may have the potential to reduce preventable morbidity and mortality. The "Clinical Genetics Transformation Programme", who are the group working on the new service specification and its implementation, will consider the ways in which this may achieved.

I would also like to provide further assurances on the 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 events, such as the sad death of Adam, are shared across the NHS at both a national and regional level and helps us to 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.

Regulation 28: Report to Prevent Future Deaths Response of Cardiac Risk in the Young (CRY) To: HM Coroner Valerie Charbit In the matter of: Adam Ankers Date of Report: 16 April 2026 Date of Response: 8th June 2026

Introduction
1. Cardiac Risk in the Young (“CRY”) writes in response to the matters raised pursuant to Regulation 28 of the Coroners (Investigations) Regulations 2013, and, in particular, point D of the Report to Prevent Future Deaths.
2. CRY acknowledges that cardiac assessment in individuals aged between 14 and 35 years reduces the risk of sudden cardiac death (“SCD”) through earlier identification of underlying cardiac disease, and that access to such assessment is not currently available to all young people, including those participating in football and other organised sport.

Response to Point D
3. It is well established that a number of cardiac conditions associated with SCD in young people will be identified through appropriate cardiac evaluation, including electrocardiogram (“ECG”) based assessment, alongside clinical history and physical examination.
4. These conditions include Arrhythmogenic Right Ventricular Cardiomyopathy (“ARVC”), an inherited cardiomyopathy which may remain clinically silent but is associated with an increased risk of life-threatening arrhythmias, particularly during sustained or high-intensity exercise. Early identification allows for appropriate clinical management, including risk stratification, surveillance, and lifestyle modification such as restriction from competitive or high-intensity sport, which may materially reduce risk.
5. Notwithstanding the above, cardiac assessment is not routinely available to the general population of young people in the United Kingdom. The UK National Screening Committee (“UK NSC”) does not currently recommend a population- wide screening programme for cardiac conditions associated with SCD in the young. As a result, access to screening services is largely dependent upon charitable provision, private healthcare, or limited availability through certain organisations.
6. This gives rise to a clear inconsistency in practice. Cardiac assessment is required or strongly encouraged within elite sport and certain professional settings, reflecting recognition of its preventative value. In professional football and other elite environments, structured screening pathways are embedded. However, equivalent access is not available to the significantly larger population of young people participating in grassroots and amateur sport.
7. In addition, cardiac assessment, including ECG evaluation, is already routinely undertaken within a number of established NHS clinical pathways, including

pre-operative assessment for surgery where clinically indicated. This reflects an accepted role for structured cardiac evaluation in identifying previously unrecognised risk in defined populations. CRY considers that this further demonstrates the principle that targeted, protocol-driven cardiac assessment is both feasible and already embedded within existing healthcare systems, albeit not yet consistently extended to young people in the context of risk of sudden cardiac death.
8. Criticism of cardiac screening programmes is often centred on concerns regarding the test, the ECG, particularly the potential for false positive and false negative results. However, these concerns must be considered in the context of significant advances in ECG interpretation. When ECGs are assessed by appropriately trained specialists with expertise in inherited cardiac conditions and sports cardiology, diagnostic accuracy is substantially improved, and both false positive and false negative rates can be significantly reduced. Consequently, concerns regarding ECG interpretation should not be viewed as an inherent limitation of screening itself, but rather as an issue that can be addressed through appropriate training, standards, and clinical governance.
9. Concerns regarding the management of individuals identified as being at risk of sudden cardiac death are also difficult to reconcile with routine NHS practice. Every day, patients are diagnosed with cardiac conditions through family screening, incidental investigations, symptom presentation, or clinical assessment, and are subsequently managed through established specialist services. Depending on the condition and level of risk, management may include lifestyle advice, medical therapy, implantation of cardioverter defibrillators (ICDs), pacemakers, catheter ablation, surgical intervention, or, where necessary, cardiac transplantation. The purpose of identifying individuals at risk is to provide access to these interventions and thereby reduce the likelihood of adverse outcomes. It would be inconsistent to accept the diagnosis and treatment of inherited cardiac conditions in all other clinical settings while questioning the value of identifying those same conditions through appropriately delivered screening programmes.
10. CRY's position is that all young people should have the opportunity to undergo cardiac screening, including at a minimum an ECG, from the age of 14. Current evidence demonstrates that approximately 1 in every 300 young people screened by CRY is identified with a potentially life-threatening cardiac condi- tion. The ability to identify these individuals before the occurrence of a cata- strophic event represents a significant opportunity for prevention.

11. Whilst CRY believes that all young people should have access to cardiac screening, current demand far exceeds available capacity. More than 140,000 young people are currently registered with CRY expressing a desire to be screened, and screening events frequently become fully booked shortly after being announced. This demonstrates a substantial unmet demand for cardiac screening services and highlights that many young people who actively seek screening are unable to access it within a reasonable timeframe.

12. In addition, CRY's recently published research has demonstrated that a single screening assessment will not identify all conditions associated with young sud- den cardiac death. Whilst screening identifies a significant number of young

people with potentially life-threatening cardiac conditions, some diseases may only become detectable as the heart matures, whilst others may develop later through acquired or progressive pathology. These findings suggest that cardiac screening should not be viewed as a one-off intervention; and they underline the need for further research to establish the most effective intervals for repeat screening. Such evidence will be essential in informing future screening policy and maximising the number of lives that can be saved.

13. The growing recognition that repeat screening may be necessary places an additional burden on already limited screening resources. CRY currently screens approximately 35,000 young people annually, yet this capacity falls substantially short of the level required to meet existing demand, let alone pro- vide repeat screening opportunities where clinically appropriate. It is therefore clear that current provision is insufficient to meet the needs of the population seeking access to screening.

14. A further challenge is the inconsistency of access across the United Kingdom. The majority of CRY screening events are funded by bereaved families and local communities seeking to create a positive legacy following the death of a young person. This support is extraordinary and has enabled CRY to establish one of the world's largest cardiac screening programmes, through which hun- dreds of thousands of young people have been screened. However, reliance on community fundraising inevitably results in geographical variation in the availability of screening services. Whilst demand for screening substantially ex- ceeds available capacity across the UK, some communities benefit from locally funded screening events whereas others have little or no local provision. Ac- cess to screening is therefore influenced not only by clinical need but also by the availability of local charitable funding and community support. These geo- graphical inequalities could be more effectively addressed through a coordi- nated national approach to cardiac screening.

Proactive and Reactive Prevention Framework
15. CRY considers that prevention of sudden cardiac death in the young necessarily involves an interplay between proactive and reactive strategies.
16. Proactive measures include structured cardiac assessment/screening, awareness of cardiac symptoms, and recognition of relevant family history of inherited cardiac conditions. These measures aim to identify individuals at risk prior to the onset of a catastrophic event.
17. In relation to paragraph 22 below, CRY notes that the existence of clinical guidance does not necessarily ensure its consistent implementation in practice. This was recognised during the 2019 review of the NICE guideline on Transient Loss of Consciousness (TLoC), where concerns were raised by nominated experts that “there are challenges to the full implementation of this guideline because TLoC is not on the top of the priority list of many clinical commissioning groups , due to competing interests from other disease conditions.”.
18. As a result, young people presenting with symptoms that may indicate an underlying cardiac condition are not always referred for appropriate

investigation, including ECG assessment, in accordance with established guidance. Furthermore, even where cardiac investigations are undertaken, interpretation may not always involve clinicians with specific expertise in inherited cardiac conditions. The variability that exists both in the implementation of guidance and in access to specialist expertise reinforces the need for clear, consistent and nationally recognised pathways for the assessment and investigation of cardiac symptoms in young people. Whilst cardiac screening does not prevent all cases of sudden cardiac death, it remains a key proactive intervention in reducing the incidence of first presentation as cardiac arrest. It therefore forms an important component of a broader prevention strategy alongside reactive measures.
19. CRY notes that the effectiveness of cardiac assessment is not solely dependent upon the act of testing, but also upon the quality and expertise of interpretation. ECG interpretation in young people requires specific specialist training due to physiological variations in the adolescent and athletic population that may otherwise mimic or obscure pathological findings. Accordingly, the value of screening programmes is closely linked to the availability of appropriately trained clinicians and governance structures for ECG review. Ensuring consistency in expert interpretation is therefore a key component of any effective screening or assessment strategy.
20. Reactive measures include high-quality education in cardiopulmonary resuscitation (“CPR”) within schools, widespread availability and training in the use of automated external defibrillators (“AEDs”), and effective emergency response systems. These interventions are critical in improving survival following cardiac arrest.

Policy Context and Symptom Evaluation
21. Through its support of families following young sudden cardiac deaths and cardiac arrests, CRY is frequently made aware of cases in which symptoms potentially indicative of an underlying cardiac condition had been reported prior to the event. These accounts suggest that opportunities for earlier investigation may not always be recognised or acted upon consistently.
22. In particular, CRY's experience of supporting affected families includes cases in which young people had presented with symptoms such as transient loss of consciousness ("TLoC"), syncope, palpitations, chest pain, breathlessness, dizziness, or a relevant family history of cardiac disease before experiencing a cardiac arrest or sudden cardiac death. Whilst CRY is not in a position to determine whether clinical management in individual cases was appropriate, these experiences highlight the importance of ensuring that healthcare professionals remain aware of relevant guidance relating to the assessment and investigation of potential cardiac symptoms in young people, including the role of ECG assessment and onward referral where indicated. CRY's experience further reinforces the importance of clear and consistent pathways that facilitate the timely recognition and investigation of symptoms potentially associated with underlying cardiac disease. Whilst symptom-based assessment remains an essential component of clinical practice, consideration should also be given to broader strategies aimed at identifying individuals who

may be at risk despite being asymptomatic, including appropriately delivered cardiac screening programmes.

Family History, Cascade Identification, and System Integration
23. In cases where an inherited cardiac condition such as ARVC is present (or other inherited cardiac diseases, including long QT syndrome, Brugada syndrome, and cardiomyopathies), there is an opportunity for cascade identification of at- risk relatives.
24. However, in practice, the effective transmission of genetic and diagnostic information to family members is not always consistently achieved within existing healthcare pathways. As a result, opportunities for early identification of at-risk individuals may be missed.
25. Where an inherited or potentially inherited cardiac condition is identified, or reasonably suspected, within a family, CRY considers that this should routinely trigger referral of first-degree blood relatives to appropriate specialist Inherited Cardiac Conditions (“ICC”) services for assessment, genetic counselling, and ongoing management where indicated. Specialist multidisciplinary centres, including within the network identified by the British Inherited Cardiac Conditions Society (www.BICCS.org.uk), provide a framework for coordinated evaluation, genetic counselling, risk stratification, and cascade screening of families affected by inherited cardiac disease. Consistent referral pathways are important to ensure that opportunities for early identification and preventative management are not missed.
26. While it is not the purpose of screening to replace established clinical pathways, CRY considers that one of the incidental benefits of structured screening programmes is that they may assist in identifying individuals and families who have not otherwise been appropriately captured within existing systems of care, thereby providing an additional safeguard against system fragmentation.

Ensuring Answers, Identifying Risk and Preventing Future Deaths Through Cardiac Pathology and Information Sharing

27. CRY considers that the post-mortem investigations following sudden cardiac death in the young play a vital role in supporting bereaved families, identifying inherited cardiac conditions and enabling cascade screening of relatives.

28. Whilst the role of expert cardiac pathology in identifying inherited risk and guiding family screening is critically important, its value extends far beyond clinical decision-making. Following the sudden death of a young person, families are often left searching for answers amidst profound grief and trauma. Establishing, wherever possible, a clear explanation for the death can help families understand what has happened, reduce the burden of uncertainty, and provide an important foundation for the grieving process. Given that sudden cardiac deaths frequently occur without warning and may carry implications for surviving relatives, specialist cardiac pathology plays a vital role not only in prevention, but also in supporting bereaved families and reducing the broader

social and emotional consequences of these tragedies. For cascade screening to be effective, there must be clear and reliable mechanisms for the communication of clinically relevant findings to family members at risk. This requires clarity around responsibility for information-sharing following diagnosis or post-mortem identification of inherited disease, to ensure that opportunities for prevention in surviving relatives are not missed.
29. CRY further considers that one of the principal barriers to obtaining clinically valuable information following sudden cardiac death in the young is the absence of routine retention of suitable DNA material for future genetic analysis. Through its work supporting bereaved families, CRY is aware of numerous cases in which potentially valuable opportunities for genetic investigation have been lost because appropriate samples were not retained at the time of death. The absence of retained DNA may significantly limit both present and future opportunities to identify inherited cardiac disease within affected families, including where scientific understanding and genetic testing capabilities continue to develop over time.
30. Where retention of DNA material is dependent upon consent from the next of kin, decisions are often required at a time of profound shock and bereavement. In such circumstances, families may not be in a position to fully appreciate the potential future significance of genetic testing for surviving relatives or subsequent generations. As a result, decisions made in the immediate aftermath of a death may inadvertently preclude future investigations that could have important implications for the identification and management of inherited cardiac conditions within the wider family.
31. CRY considers that there should be a review of the existing legal and procedural framework governing post-mortem DNA retention in cases of sudden cardiac death in the young. Consideration should be given to a system whereby retention of suitable DNA material is presumed for the purpose of potential familial investigation unless and until appropriately informed first- degree blood relatives decide otherwise. Such an approach would allow families to make fully informed decisions at a later stage, outside the period of acute bereavement, and with proper understanding of the potential implications for both current and future generations.

Role of Sporting Bodies
32. Sporting governing bodies, including those responsible for football, are well placed to contribute meaningfully to prevention strategies. Organisations that mandate or support cardiac screening at elite level should also play a role in: (a) raising awareness of cardiac risk, family history of inherited cardiac conditions, and symptoms, among grassroots participants; (b) supporting education around CPR and AED use; and (c) facilitating access to appropriate cardiac assessment pathways where possible.

33. CRY further considers that sporting organisations occupy a unique position in communicating the importance of cardiac assessment to young participants engaged in grassroots sport. In sports where cardiac screening is already mandated or strongly encouraged at elite level, there is an important

preventative message that earlier identification of cardiac disease may help avoid catastrophic cardiac events during progression through competitive sport. Early awareness may also assist individuals in understanding potential implications for future participation in professional pathways where cardiac assessment forms part of contractual or occupational requirements. Similar considerations arise in other professions where cardiac evaluation may be required, including military service and certain aviation roles.

Conclusion

34. CRY supports the position that inconsistent access to cardiac assessment, combined with variability in implementation of symptom recognition and emergency response strategies, represents a missed opportunity to reduce avoidable deaths in young people.

35. CRY's experience, derived from supporting families affected by sudden cardiac death and cardiac arrest in the young, demonstrates the importance of a comprehensive and proportionate prevention strategy that combines both proactive and reactive measures. Such a strategy should include: (a) reconsideration of current cardiac screening policy through the UK NSC review process; (b) improved awareness and implementation of symptom-based assessment pathways, including timely access to ECG assessment and specialist referral where appropriate; (c) expansion of targeted and opportunistic screening initiatives, particularly for higher-risk groups and those participating in organised sport; (d) the recognition of CPR and AED training as an essential life skill, with consistent delivery in schools and wider communities so that everyone has the knowledge and confidence to respond effectively to a cardiac arrest, together with improved access to publicly available defibrillators; (e) strengthened and adequately funded systems for specialist cardiac pathology; routine retention of appropriate DNA samples; information sharing and family identification following sudden cardiac death; and ensuring that these essential services are delivered consistently and are not dependent upon charitable funding or local initiatives; and (f) timely cascade screening and clinical evaluation of relatives at a specialist inherited cardiac conditions clinic where an inherited cardiac condition is suspected or confirmed.

36. Whilst no single intervention will prevent every young sudden cardiac death, CRY believes that many more lives can be saved through a coordinated approach that improves the identification of those at risk, strengthens emergency response capabilities, and ensures that lessons are learned from every death, wherever possible. By combining earlier identification, effective emergency intervention, and robust family investigation following a death, there is a genuine opportunity to reduce the number of families affected by these devastating tragedies. The charity therefore welcomes the opportunity to

contribute to the issues raised in the Prevention of Future Deaths Report and would be pleased to provide any further information that may assist.

What actions are CRY taking to prevent young sudden cardiac deaths? CRY will continue to campaign to raise awareness of young sudden cardiac death, the devastating impact it has on families, and the need for every young person to have the opportunity to have their heart tested, as well as the importance of further research into the causes and prevention of young sudden cardiac death. The ECG is the most effective tool available for the early identification of many cardiac conditions associated with young sudden cardiac death. Once a condition is identified, appropriate advice, treatment and clinical management can be provided to significantly reduce the risk of cardiac arrest. CRY currently screens more than 35,000 young people each year and one in every 300 young people screened will be identified with a potentially life-threatening cardiac condition. Demand for screening continues to exceed CRY’s current capacity to provide it. To help address this challenge, CRY is investing in machine learning and AI to make screening more cost-effective, address the shortage of specialist ECG interpreters, and help meet current and future demand. These technologies present significant opportunities for preventative healthcare, enabling expert knowledge to be applied more efficiently and consistently, increasing access to screening and helping to identify more young people with potentially life-threatening cardiac conditions at an earlier stage. CRY is also engaging with Parliamentarians to highlight the need for funding to ensure expert cardiac pathology is available whenever required and is not dependent upon the charitable fundraising efforts of other bereaved families, and to secure specialist commissioning of inherited cardiac conditions services across the UK, providing essential support for families following a young sudden cardiac death and for those diagnosed with an inherited cardiac condition. While not every young sudden cardiac death can be prevented, too many opportunities to identify those at risk are still being missed. CRY hopes that the findings and recommendations arising from this Prevention of Future Deaths Report will help drive the changes needed to improve prevention, diagnosis and support for affected families, and ultimately reduce the number of young people who die suddenly from undiagnosed cardiac conditions.

Dear Ms Charbit

ADAM ANKERS (DECEASED)

I am writing in response to the preventing future deaths report in my capacity as managing director of the Association of Ambulance Chief Executives (AACE).

On behalf of AACE, I would like to extend our sincere condolences to the family of Mr Ankers.

AACE is a private company owned by the English and Welsh Ambulance NHS trusts. It exists to provide ambulance services with a central organisation that supports, co-ordinates and assists with the implementation of nationally agreed policy. Our primary focus is the ongoing development of UK NHS ambulance services and the improvement of patient care. It is a company owned by NHS organisations and possess the intellectual property rights of the Joint Royal Colleges Ambulance Liaison Committee (JRCALC) UK ambulance service clinical practice guidelines (the “JRCALC guidelines”). AACE is not constituted to mandate or instruct ambulance services, however, it has national influence via the regular meetings of ambulance chief executives and chairs along with a network of national specialist groups.

We must emphasise that as a membership organisation, AACE is not responsible for the training or education of ambulance staff, or the public / lay people. We do, however, believe it is everyone’s responsibility to consider the need for first aid training and how to recognise and help someone in cardiac arrest by being able to perform cardio-pulmonary resuscitation (CPR) and use a defibrillator if available, until professional help arrives.

We respond in relation to your matters of concern:

That there is a need for better understanding of the use of defibrillators particularly by lay persons and trained first aid persons

We agree that better understanding of the use of defibrillators will lead to improved patient outcomes.

The systems and processes that ambulance services use when taking 999 calls are regularly scrutinised, with learning and improvement sought. At present, there is an ongoing review of the triage process for out-of-hospital cardiac arrest calls to afford a sensitive and specific protocol, with timely delivery of (CPR), where appropriate, and effective deployment of public access defibrillators. In addition, one English ambulance service has undertaken a pilot of advanced paramedic-led video- assisted CPR. This use of video is designed to support with identifying ambiguous presentations, improve CPR quality, and aid the public in timely use of a defibrillator. The early results of this pilot have been shared with other ambulance services, and we are aware of many ambulance services seeking to introduce similar processes.

Ambulance control 999 call handlers are trained how to ask specific questions when taking 999 calls to obtain as accurate information as possible. Call handlers follow strict protocols that seek to ensure clear and understandable questioning. Senior clinical support is available to support call handlers where required, including the management of cardiac arrest. Both triage systems utilised in UK ambulance services are risk averse, with a presumption in favour of CPR where any doubt exists. Calls are regularly audited to ensure compliance with continual learning and improvement where identified.

All ambulance services Computer Aided Dispatch (CAD) systems are linked to The Circuit (The UK defibrillator network). This provides call handlers real time availability and location of defibrillators to OHCA calls, with instructions on access. Where a defibrillator arrives on scene, bystanders and rescuers are provided with additional support and instruction on use by call handlers alongside the defibrillator’s own audible instructions.

We fully support other national initiatives and there are a wealth of national programmes seeking to increase recognition of cardiac arrest, early CPR and defibrillation use. Ambulance services are active in delivering such training to the public. AACE’s out-of-hospital cardiac arrest programme is key in supporting such initiatives including mandating CPR training in schools and the introduction of first aid training for driving tests. We also support Restart a Heart (RSAH) and RSAH Live: annual initiatives led by Resuscitation Council UK (RCUK) and Save a Life Scotland which aim to increase the number of people surviving out-of-hospital cardiac arrests by improving cardiac arrest awareness and CPR education. AACE has also worked alongside RCUK to support the development and dissemination of related guidance, an example being RCUK’s current delivery of field of play guidance, specifically focused at grassroots sports.

AACE has supported a number of nationwide initiatives to improve access to defibrillators. We co- produced a consensus statement in 2024 recommending that all defibrillators are stored in unlocked boxes and available 24/7. In conjunction with ambulance services, AACE regularly collaborates with partners to deliver and disseminate public-facing communications about the use of defibrillators. There is ongoing work to improve the placement of defibrillators through strategic optimisation tools, to identify areas of highest risk, and lowest access to defibrillators.

Bystander CPR rates across the English ambulance services continues to be high (>75%) and defibrillator use is improving with the highest recorded use to date in 2024 (2025 data not yet available). To support timely access to CPR and defibrillators, we encourage and support the use of Community First Responders (CFRs) across the ambulance sector. These volunteers are trained in CPR and carry with them defibrillators and respond to 999 calls including cardiac arrests. Often, they can be tasked and arrive before the ambulance and can help in the early recognition of cardiac arrest

Chair: Jason Killens KAM Managing Director: Anna Parry

and the commencement of resuscitation attempts. Likewise, all ambulance services are encouraged to utilise the GoodSAM cardiac responder alerting mobile phone application, which allows ambulance services to alert nearby, trained responders to OHCA, to deliver CPR and defibrillation, prior to ambulance service arrival.

We currently have a cardiac arrest lead working within our team. A cardiac arrest strategy is under development, of which a key focus will include improving triage, reducing time to start CPR, adoption of video CPR, and improving access to defibrillators. All UK ambulance services are currently undertaking targeted and focused programmes seeking to improve community readiness and reduce inequalities in resuscitation.

I can assure you we will continue our work with partners to improve all aspects of cardiac arrest management with the aim of improving patient outcomes.

I hope this is helpful. Please do not hesitate to contact me should you require any further information.