Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if his Department will make an assessment of the potential merits of an (a) centralised and (b) nationwide case-finding programme to identify people at high risk of (i) developing and (ii) inheriting less survivable cancers.

The National Disease Registration Service (NDRS) has committed to developing a National Inherited Cancer Predisposition Register (NICPR) as part of its 2024 to 2027 strategy, building on the work to establish the National Lynch Registry. The NICPR will launch on 30 June, and will look at a wider range of cancers for which there is an increased inherited risk, including for less survivable cancers. It will identify high-risk individuals who are eligible for targeted screening and surveillance, and will act as an electronic referral route into national screening programmes where these exist, for instance Lynch syndrome and bowel screening.

The NICPR is also a key commitment in the Rare Disease Action Plan for England, with NDRS in NHS England as the lead delivery partner, further highlighting its relevance to improving care for people with rare inherited cancer risk.

NHS England is also working on case-finding approaches for less survivable cancers, where the evidence suggests this is appropriate. It is currently developing a public-facing Family History Checker, which enables people and their families affected by pancreatic cancer to self-assess if they may inherit risk. Individuals identified as being at risk are referred directly to the European Registry of Hereditary Pancreatic Diseases research trial, which aims to understand inherited conditions of the pancreas. Referrals to the trial can be made by any healthcare professional across all health sectors or by individuals via self-referral, contributing to a centralised approach to case-finding.

As part of our National Cancer Plan, we have been working with members of the Less Survivable Cancers Taskforce, a group of charities focusing on cancers with poor survival rates, to identify how we can improve diagnosis, treatment, and outcomes for less survivable cancers.