Question to the Department of Health and Social Care:

To ask His Majesty's Government what assessment they have made of the effectiveness of the NHS new-born blood spot programme; and what steps they have taken to bring the UK in line with other European countries on the number of conditions screened for.

The NHS Newborn Blood Spot Programme consistently achieves very high coverage with the most recent figure at 98% in Quarter 2 of 2025/26. This not only indicates that eligible babies are being screened, but also that conclusive results are recorded on the Child Health Information Service system before or at 17 days of age, indicating that the programme is effective at reaching almost the entire eligible population and delivering results early enough to influence outcomes.

Coverage of babies who move into the area after birth is lower at 83%, so the programme is less effective for this subgroup, but numbers are much smaller.

A total of 570,865 babies were screened in 2024/25, demonstrating the programme is operating effectively at scale, and the system is robust enough to deliver screening across a large cohort.

Over one million babies have been screened for severe combined immunodeficiency since the launch of the in-service evaluation (ISE) in 2017. NHS England’s report on the 30-month ISE evaluation period found that screening detected 10 babies with the condition who would otherwise have gone undetected until infections developed, thus preventing serious illness.

It is important to note that comparisons of screening programmes with other health systems can be misleading. Some countries or regions reportedly screen for a condition when it is only at the pilot or research stage. Some ‘screening programmes’ just test for a condition rather than being end-to-end quality-assured programmes that include diagnosis, treatment, and care. And screening in some countries is delivered regionally, or even just by individual hospitals, rather than nationally. They are therefore not directly comparable to the national screening programmes offered in the United Kingdom.

For very rare conditions it is difficult to generate robust evidence to demonstrate the value of screening, because so few babies are affected. The UK National Screening Committee, which advises the Government on all screening matters, is working with experts and partner organisations to look at how to make it easier to develop the evidence needed to make robust recommendations on the addition of more rare diseases to the NHS Newborn Blood Spot Programme.