Heart Diseases: Young People
(asked on 14th July 2025) - View Source
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 ensure that young people diagnosed with heart conditions receive appropriate (a) lifestyle advice, (b) treatment and (c) follow-up care to prevent cardiac arrest.
Most cases of sudden cardiac death (SCD) are related to undetected cardiovascular disease. In the younger population, SCD is often due to congenital heart defects. Given this, genomics has an important role to play in diagnosing and supporting the treatment and management of a number of cardiac conditions. The National Genomic Test Directory 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 this includes genomic testing for a number of conditions which affect the heart, including, for example, testing for familial hypercholesteremia (FH), cardiomyopathies, Long QT syndrome, Brugada syndrome, and others. Further information on the National Genomic Test Directory is available at the following link:
https://www.england.nhs.uk/publication/national-genomic-test-directories/
The 10-Year Health Plan includes a commitment to establish a genomics population health service, accessible to all by the end of the decade. Further information on the 10-Year Health Plan is available at the following link:
The genomics population health service will be key to delivering a number of other commitments in the 10-Year Health Plan, including: expanding the National Health Service whole genome sequencing programme, with a focus on risks in relation to common disease areas including cardiovascular disease; expanding genomic testing for inherited causes of major diseases to allow earlier detection and intervention, including cardiovascular disease predisposition, for example due to FH; and beginning to integrate genomic insights into cardiovascular disease prevention and care through a service evaluation, with Our Future Health implementing Integrated Risk Scores.
NHS England has published a national service specification for inherited cardiac conditions for all ages, that covers patients who often present as young adults with previously undiagnosed cardiac disease or families requiring follow up due to a death from this cause. The service specification is available at the following link:
https://www.england.nhs.uk/wp-content/uploads/2017/11/cardiology-inherited-cardiac-conditions.pdf
This describes the service model and mandated guidelines and guidance that should be followed to support the diagnosis and treatment of patients or family members. It also includes the requirement for inherited cardiac conditions services to investigate suspected cases. NHS England has also published a suite of national service specifications and standards for congenital heart disease (CHD), which define the standards of care expected from organisations funded by NHS England, to support and improve the diagnosis and treatment of patients with congenital cardiac problems. The standards for CHD are available at the following link:
NHS England works closely with the Congenital Heart Networks to support work to maintain and monitor elective CHD surgery activity, waiting lists, and waiting times across England, noting that there are interdependencies with critical care capacity. NHS England’s Clinical Reference Group (CRG) has identified that there is scope for improvement in antenatal diagnosis rates for congenital heart defects, and has established a workstream to understand the causes of variation in foetal cardiology services across England. The CRG is also working closely with relevant professional organisations and charities to develop a national workforce strategy for CHD.