MiDavies – 2016 Parliamentary Question to the Department of Health

The below Parliamentary question was asked by MiDavies on 2016-05-19.

To ask the Secretary of State for Health, whether his Department plans to take steps to increase diagnosis rates of familial hypercholesterolemia.

Jane Ellison

NHS England and Public Health England (PHE) are working to raise the profile of familial hypercholesterolaemia (FH) and break down the barriers to genetic testing.

NHS England’s national clinical director (NCD) for heart disease chairs an FH steering group which comprises representatives from relevant stakeholder organisations. This group, with funding from the British Heart Foundation (BHF), has established FH specialist nurses in many areas of England, aimed at increasing FH cascade testing so that more affected families can be identified. The NCD has worked closely with BHF in their appointment of the FH Nurses, and with the other major charity in this field – HEART-UK. Software to support cascade testing and provide a database for FH is available and will be increasingly used in England as FH services are established.

NHS England has also identified FH as a possible condition that it could focus on as part of the work looking into personalised medicine and how the National Health Service might make better use of increased genetic testing.

Furthermore, the Healthcare Public Health Team at PHE is working in collaboration with national and local partners and experts in the field through an FH Steering Group chaired by the National Clinical Director for Cardiology, and led by the BHF, to develop a systems approach to the detection and management of FH.