Hundreds of families in Nottinghamshire might be unaware if their baby has a genetic blood disorder, marking the second NHS mistake this year.
Approximately 300 families with children born in Bassetlaw and Mid Nottinghamshire from 2004 through September 2024 have been identified as affected.
Changes in how genetic test results are shared meant some families may not know if their child is a carrier of traits related to sickle cell disease or abnormal hemoglobin genes.
NHS England stated in a letter that they are reaching out to these families to clarify what it means for both them and their children to be carriers.
Additionally, the NHS has indicated that, following this error, improvements have been made in how blood results are communicated in the area, aiming for a more reliable process. The local hemoglobinopathy team at Nottingham University Hospital is currently delivering screening results regarding sickle cell carrier status to parents across Nottingham and Nottinghamshire. Notably, this notification system had previously only included major cities and the southern parts of the county.
Sickle cell disease predominantly impacts individuals of African-Caribbean descent, making testing for sickle cell traits essential. Although carriers typically don’t exhibit symptoms, there may be significant medical considerations to keep in mind, particularly during procedures that require anesthesia.
Moreover, studies suggest that carriers might experience pain during intense physical activity. If both parents carry the sickle cell trait, there’s a 25% chance their child could have sickle cell anemia.
In January, a report highlighted that an NHS error affected over 800 families in Derbyshire, relating to sickle cell disease and abnormal hemoglobin genes. NHS officials expressed deep regret, stating the mistake was entirely preventable and that an investigation is underway.
“We’re committed to offering a wide range of services to our clients,” remarked John James, CEO of the Sickle Cell Society. He added that it’s unacceptable for families to miss out on critical notifications about their children’s newborn screening results. This issue has resurfaced in other regions over the past 20 years, showcasing systemic flaws within the NHS, particularly in relaying test results.
“While these individuals might not have sickle cell disorders, being aware of these traits is essential for long-term health and making informed decisions,” he noted.
“We appreciate the NHS’s efforts to address the problems in Nottinghamshire. However, we urge that the same level of diligence is ensured across all areas of England to avoid repeated failures in basic procedures. Screening should not be treated as optional.”
An NHS spokesperson stated: “We regret that some families in Bassetlaw and Mid Nottinghamshire were not informed that their children are carriers of sickle cell traits or have abnormal hemoglobin genes.”
