NHS error meant hundreds of parents did not know children’s sickle cell status
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More than 800 African-Caribbean families in Derbyshire were not sent results of tests for genetic blood disorders. An error by the NHS led to hundreds of families with African-Caribbean heritage being left unaware of whether their babies may be carriers of certain genetic blood disorders, the Guardian has learned.
![[John James, the chief executive of the Sickle Cell Society]](https://i.guim.co.uk/img/media/b3b239e298f51d6b621319c9b39b17bd631a3bd9/0_240_3543_2125/master/3543.jpg?width=445&dpr=1&s=none&crop=none)
More than 800 families in Derbyshire were not sent the results of a heel prick test given to babies after birth, meaning they did not know whether their child was a carrier of a trait for sickle cell disease or for an unusual haemoglobin gene. The Guardian understands that the failure was uncovered in March this year, having gone unnoticed for 12 years, after a parent contacted the NHS to ask why they had not received their child’s results. The query led to the discovery of a systemic failure affecting hundreds of families. The NHS began to contact the affected families four months later.
The NHS said the failure was due to changes made in 2012 regarding how the results of the genetic testing were communicated to parents. In a meeting with affected families last month, NHS officials apologised “wholeheartedly”, saying the error “shouldn’t have happened” and that an investigation had been launched. Officials also said that the new pathway, from the heel prick test to the results being communicated, needed to be a “much more robust process”.
Sonya Robotham, a representative from Black Community Matters, an organisation based in Derby that has been supporting the families involved, said the failure has had a “devastating impact”, which has left many of the families involved feeling “betrayed and vulnerable”.
