Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to improve detection of undiagnosed heart conditions in young people.

The UK National Screening Committee last reviewed screening for sudden cardiac death (SCD) in people under the age of 39 years old in 2019 and concluded that screening should not be offered, with further information available at the following link:

https://view-health-screening-recommendations.service.gov.uk/sudden-cardiac-death/

Research showed that current tests are not accurate enough to use in young people without symptoms, and that treatments and interventions were not based on good scientific evidence to prevent SCD.

To stop SCD in young people, the current consensus is to focus on rapid identification and care of people who are likely to be at risk of SCD due to a family link or because they have had symptoms, and to train people to carry out cardiopulmonary resuscitation and to use defibrillators.

NHS England has published a national service specification for Inherited Cardiac Conditions, that covers patients who often present as young adults with previously undiagnosed cardiac disease, or families requiring a follow up due to a death from this cause. This describes the service model and guidance that should be followed to support the diagnosis and treatment of patients or family members. It also includes the requirement for specialised Inherited Cardiac Conditions services to investigate suspected cases. NHS England is currently reviewing this service specification in line with the national service specification methods review process. NHS England is working with a broad range of stakeholders as part of this review, including National Health Service clinical experts, the Association of Inherited Cardiac Conditions, Cardiomyopathy UK, Heart Valve Voice, and the British Heart Foundation. Further information on the service specification for Inherited Cardiac Conditions is available at the following link:

https://www.england.nhs.uk/wp-content/uploads/2017/11/cardiology-inherited-cardiac-conditions.pdf

These documents describe the service model and guidance that should be followed to support the diagnosis and treatment of patients. They cover all paediatric cardiac activity, specifically surgery and cardiology, taking place in the Specialist Children’s Surgical Centres, or Level 1 services, the Specialist Children’s Cardiology Centres, or Level 2 services, and the Local Children’s Cardiac Centres, or Level 3 services, including activity undertaken by the specialist centres on an outreach basis where it is delivered as part of a provider network, with the aim of ensuring that all patient care is of a consistently high quality.