Asked by: Mims Davies (Conservative - Mid Sussex)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, whether his Department plans to take steps to increase diagnosis rates of familial hypercholesterolemia.
Answered by 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.
Asked by: Mims Davies (Conservative - Mid Sussex)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what assessment he has made of the potential merits of the Italian model of cardiac screening for young people involved in sport.
Answered by Jane Ellison
There are a number of questions relating to the effectiveness of the Italian programme that are not available in published literature. The screening programme had been asked previously to provide unpublished data and information but have not to date done so. I wrote to the Italian government again in February 2016 with no response received. Departmental officials will continue to follow this up.
The most recent review of risk of sudden cardiac death reviewed published evidence and literature relating to a variety of programmes including that in Italy;
http://legacy.screening.nhs.uk/suddencardiacdeath
Asked by: Mims Davies (Conservative - Mid Sussex)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health, what discussions his Department and NHS England have had with the National Information Board on developing a digital maternity tool as recommended in the National Maternity Review.
Answered by Ben Gummer
To date there have been no formal discussions with the National Information Board (NIB) in relation to developing a maternity digital tool. Baroness Cumberlege, Chair of the National Maternity Review, has been a member of the NIB since December 2015. We understand that Baroness Cumberlege has had informal discussions with the NIB Chair regarding the Maternity Review.
The digital technology workstream for the implementation of the maternity review will support the rollout of patient-held digital maternity records and the development of a digital tool to support expectant parents with access to improved information to support their pregnancy, choice and connection to peers.
This work will embed the ambitions outlined by the NIB in relation to supporting greater self-care through digital services and tools, paper-free at the point of care.