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 adequacy of (a) specialist bereavement support and (b) familial screening services for the family members of a person who died from a cardiac condition under the age of 35.

NHS England has published the national service specification Inherited Cardiac Conditions (All Ages), which 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 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. Further information on 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

Genomic testing in the National Health Service in England is provided through the NHS Genomic Medicine Service and is delivered by a national genomic testing network of seven NHS Genomic Laboratory Hubs (GLHs). The NHS GLHs deliver testing as directed by the National Genomic Test Directory (the Test Directory), which includes tests for over 7000 rare diseases with an associated genetic cause and over 200 cancer clinical indications, including both whole genome sequencing (WGS) and non-WGS testing. Further information on the Test Directory is available at the following link:

https://www.england.nhs.uk/publication/national-genomic-test-directories/

A robust and evidence-based process and policy is in place to routinely review the Test Directory to ensure that genomic testing continues to be available for all patients for whom it would be of clinical benefit, while delivering value for money for the NHS. Further information on this process is available at the following link:

https://www.england.nhs.uk/genomics/the-national-genomic-test-directory/

Genomics has an important role to play in diagnosing and supporting the treatment and management of a number of cardiac conditions. The 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, such as testing for familial hypercholesteremia, cardiomyopathies, Long QT syndrome, Brugada syndrome, and others.