An NHS error left hundreds of parents unaware of their children’s sickle cell status
A mistake by the NHS has left hundreds of families of African-Caribbean heritage unaware whether their babies could be carriers of certain genetic blood diseases, the Guardian has learned.
More than 800 families in Derbyshire have not received the results of a heel prick test given to babies after birth, meaning they did not know if their child was a carrier of a trait sickle cell disease or for an unusual hemoglobin gene.
The Guardian understands the failure came to light in March this year, after going undetected for 12 years, after a parent contacted the NHS to ask why they had not received their child’s results. The question led to the discovery of a systemic failure affecting hundreds of families. Four months later, the NHS began contacting affected families.
The NHS said the failure was due to changes made in 2012 to the way genetic test results were communicated to parents.
At a meeting with affected families last month, NHS officials apologized “wholeheartedly”, said the mistake “should not have happened” and that an investigation had been launched. Officials also said the new process, from the heel prick test to the announcement of results, should be a “much more robust process”.
Sonya Robotham, a representative of Black Community Matters, an organization based in Derby which supports the families involved, said the failure has had a “devastating impact”, leaving many of the families involved feeling “betrayed and vulnerable”.
“For more than a decade, families have been denied vital health information about the well-being of their children, resulting in undiagnosed conditions and increased anxiety,” Robotham said. “The emotional and physical toll of this neglect cannot be overstated; it has fostered a climate of mistrust of health care systems that are meant to protect and serve us.”
She added: “Without doubt the black community in Derby, and not for the first time, feels deeply let down by the failures of the NHS. This isn’t just about a missed opportunity; it is a blatant disregard for our health and our lives.”
Sickle cell disease mainly affects people with an African-Caribbean background. Testing for sickle cell trait is important because although carriers may not have symptoms of sickle cell disease, there is evidence that they may have additional medical needs, such as whether they need an anesthetic.
The sickle cell trait can affect women during pregnancy, and carriers may experience pain during intense physical activity and at high altitudes, research suggests. If two parents are carriers of sickle cell disease, there is a one in four chance that their children will develop sickle cell anemia.
John James, the chief executive of Sickle Cell Society, said it was “very concerning” that parents were not aware of their babies’ screening results.
“Although these babies do not have sickle cell anemia, knowing that they carry this trait is crucial information for them and their parents. We have campaigned extensively to ensure these tests are carried out routinely at birth, and we find it unacceptable that such a vital step is being done incorrectly,” James said.
“While we appreciate the efforts of the NHS to tackle this surveillance, we call on them to do better for people affected by sickle cell disease and sickle cell disease, and to get the basics right. Ensuring test results are shared quickly and establishing robust processes to support families are both critical.”
He urged anyone who wants to know their sickle cell status to contact their GP.
An NHS spokesperson said: “Families in Derbyshire have been contacted directly so they understand what it means to be a carrier for their children, and we have a helpline for affected families to contact. The affected children do not have and will not develop sickle cell disease.
“From January there will be a new service in Derbyshire where families whose babies are found to be carriers will be contacted by a healthcare specialist within six weeks of their blood test.”