Sickle cell carrier review

In late 2024, NHS England Midlands became aware that some families of babies in Mid-Nottinghamshire and Bassetlaw who were carriers of sickle cell or other haemoglobinopathies might not have been notified of these results following newborn blood spot screening tests. This was discovered following a pathway review across the East Midlands.

An audit was carried out and NHS England wrote to all potentially affected families. This involves approximately 300 families in the Bassetlaw and Mid Notts (Mansfield, Ashfield, Newark and Sherwood) area with children born between 2004 and September 2024.

Following this, a review was carried out to find out how this had happened. This page summarises the review.

The issue

Between 2004 and 2024, some families in Nottinghamshire were not told that their newborns were carriers of sickle cell or other rare blood conditions. This information comes from the newborn blood spot test (the “heel prick” test) done at 5 days old. The issue was discovered in 2024 after a similar problem was found in Derbyshire.

How it happened

Inconsistent processes: Different parts of Nottinghamshire used different methods to share results. In some areas, specialist nurses gave results directly. In others, GPs were expected to do it — but there was no system to check if they actually did.
Processes changed without involving staff: there is no evidence that changes to the way results were shared were made with the involvement of staff including GPs and Health Visitors
GPs not set up for this: As these results are very rare in Nottinghamshire, many GPs would never have seen a result like this before. GPs weren’t always trained or confident to explain these results. They didn’t order the tests themselves so when letters were sent to practices often there was uncertainty about what to do with them.
No national letter: There was no standard letter to send to families, which would have occurred if all the screening results were negative. This meant many parents never received written confirmation of their child’s result which would have acted as a backup.
Difficulties with Health Visitors checking results: Health Visitors were meant to check if families got their results—but they often saw families before GPs did, and there were limited opportunities for health visitors to do a follow-up check later.
Complex and confusing system: The process involved many handovers—midwives, labs, GPs, Health Visitors, and Child Health Information Services (CHIS)—with no single person responsible for making sure families got the result.
No monitoring: There were no performance checks or audits to spot the problem earlier.
Organisational changes: Over 20 years, many NHS structures changed, making it harder to track who was responsible for delivering the results and for checking they were delivered.

What has changed

Everyone contacted

In 2025, 316 people who might not have received their results were contacted by letter—either directly (if over 16) or through their parents/guardians. GPs were also informed.

New pathway in place

From February 2025, a new system was introduced:

Specialist nurses at Nottingham University Hospitals (NUH) now deliver all blood condition carrier results directly to families.
GPs are no longer responsible for sharing these results.

National improvements

A standard letter template has been created and will be used across the East Midlands from July 2025.
National guidance has been updated to make sure all families are informed, regardless of where they live.

System fixes

The new pathway is clearly documented, with defined roles and responsibilities.
Regular audits will check that results are being delivered.
Performance measures are being introduced to track how well the system works.
Letters will act as a backup to make sure families are informed even if other steps fail.

Community engagement

The NHS is working to ensure that future communications are clearer and more sensitive, especially for communities that may already experience disadvantages.