Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if he will take steps to increase awareness among women with Neurofibromatosis type 1 that they are entitled to breast screening from the age of 40; and whether he has made an assessment of the potential merits of GPs taking an increased role in (a) identifying and (b) referring such women for screening.

The NHS Breast Screening Programme invites women between the ages of 50 and 71 years old to a screening every three years. However, women with an increased risk of breast cancer, such as those with neurofibromatosis type 1, are invited for screening from 40 years old.

Any woman who has neurofibromatosis type 1 and who hasn’t been referred for breast screening at 40 years old, or who has noticed changes to their breasts, should speak to their general practitioner.

The National Health Service website, available to the public and professionals, has information on neurofibromatosis and the increased risk of breast cancer, and advises breast screening from 40 years old.

In 2023, the England Rare Diseases Action Plan committed to improving the registration of national data for exemplar rare genetic conditions which cause an inherited predisposition to cancer, building on the success of the national Lynch syndrome registry.