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.
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”.
“For over a decade, families have been denied essential health information about their children’s wellbeing, which has resulted in undiagnosed conditions and heightened anxiety,” Robotham said. “The emotional and physical toll of this neglect cannot be overstated; it has fostered a climate of mistrust towards healthcare systems that are meant to protect and serve us.”
She added: “Without a doubt, the black community in Derby, and not for the first time, feels deeply let down by the NHS’s failures. This isn’t just about a missed opportunity; it’s a blatant disregard for our health and lives.”
Sickle cell disease primarily affects people from an African-Caribbean background. Testing for the sickle cell trait is important because although carriers do not have sickle cell disease symptoms, there is evidence they have additional medical needs, such as if they need an anaesthetic.
The sickle cell trait may affect women during pregnancy, and carriers can experience pain during intense physical activity and at high altitudes, research suggests. If two parents carry the sickle cell trait, there is a one in four chance their children will have sickle cell anaemia.
John James, the chief executive of Sickle Cell Society, said it was “deeply concerning” that parents were not informed of their babies’ screening results.
“While these babies do not have sickle cell anaemia, knowing they carry the trait is crucial information for them and their parents. We campaigned extensively to ensure these tests are routinely conducted at birth, and we find it unacceptable that such an essential step has been mishandled,” James said.
“Although we appreciate the NHS’s efforts to address this oversight, we call on them to do better for people affected by sickle cell disorder and sickle cell trait, and to get the basics right. Ensuring that test results are shared promptly, and putting in place robust processes to support families, are both vital.”
He urged anyone wanting to know their sickle cell status to contact their GP.
An NHS spokesperson said: “Families in Derbyshire impacted have been contacted directly so that they understand what being a carrier means for their children, and we have a helpline in place for those families impacted to contact. The children affected 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 spot screening test.”
Source: theguardian.com
