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 help increase awareness to ensure that women with the NF1 gene undergo the breast cancer screening to which they are entitled.

Neurofibromatosis type 1 (NF1) is an inherited condition that causes cancerous and non-cancerous tumours to grow along the nerves. It affects everyone in a different way. The National Institute for Health and Care Excellence’s (NICE) guidance does not address NF1 specifically but does state that people with certain genetic conditions should be referred to a geneticist to consider their risk, and that people aged between 40 and 50 years old may qualify for annual scans of their breasts.

An individual’s risk of breast cancer is based on a number of factors. These factors may vary throughout a lifetime which is why individuals are advised to seek advice from their health professionals. Most individuals with NF1 would be considered at moderate risk of breast cancer, which would mean they should be referred for annual scans by the clinician leading their care. This is not part of the breast cancer screening programme, but is the responsibility of local services to organise and commission.

There are a range of different sources of information for patients including the Childhood Tumour Trust and Nerve Tumours UK website. Nerve Tumours UK also includes guidance to general practitioners and have specialist nurse advisors across England. Information for individuals with NF1 is also provided on the NHS website at the following link:

https://www.nhs.uk/conditions/neurofibromatosis-type-1