Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the level of awareness amongst medical professional of (a) youth sudden cardiac death, (b) the symptoms of cardiac conditions in the young and (c) the referral pathways for people who have lost a relative under the age of 35 to a cardiac condition.

The Department expects National Institute for Health and Care Excellence guidance on the use of electrocardiograms for young people presenting with certain symptoms to be followed.

To stop sudden cardiac death (SCD) in young people, the current consensus is to focus on the 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 the national service specification Inherited Cardiac Conditions (All Ages) that covers patients who often present as young adults with previously undiagnosed cardiac disease and families requiring 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. The Inherited Cardiac Conditions (All Ages) service specification 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, including both surgery and cardiology, taking place in the Specialist Children’s Surgical Centres, which are Level 1 services, the Specialist Children’s Cardiology Centres, Level 2 services, and the Local Children’s Cardiac Centres, 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.