Medical professionals have issued a stark warning, alleging that children in the UK are suffering painful and preventable deaths due to a deliberate political decision not to expand routine disease testing for newborns.
A Stark International Comparison
The NHS currently performs the 'heel prick' blood test on babies at around five days old, screening for 10 treatable conditions, including cystic fibrosis. This figure pales in comparison to many European neighbours. Newborns in Italy are checked for 48 diseases and conditions, with Norway screening for 39, Poland for 36, and the Netherlands for 31.
This week, former Little Mix singer Jesy Nelson added her voice to the campaign, demanding the NHS expand screening to include spinal muscular atrophy (SMA), which her twin seven-month-old daughters have. She suggested a late diagnosis means they will 'probably never walk'.
Committee Rejects Lifesaving Test Despite Available Treatment
The UK National Screening Committee (UK NSC), which advises government ministers, has now ruled against adding another devastating disease to the test at its latest meeting. Members rejected calls to introduce screening for metachromatic leukodystrophy (MLD), a rare genetic disorder, even though an effective NHS treatment exists if caught early and individual tests cost approximately £1 each.
Paediatric consultant Professor Simon Jones, a leading metabolic disease expert at St Mary’s Hospital and the University of Manchester, stated: ‘I’ve seen children who received treatment grow up healthy - and I’ve watched others deteriorate and die because they were diagnosed just weeks too late. This is no longer a medical decision, it’s a political choice.’
Families Plead for Health Secretary to Intervene
The UK NSC made its decision based on cost-effectiveness and available evidence. Unless Health Secretary Wes Streeting intervenes, the evidence will not be reviewed again until 2029/30. MLD is a degenerative disease affecting about one in 40,000 babies, with most children dying before their fifth birthday, gradually losing the ability to walk, talk, and see.
A life-saving gene therapy, Libmeldy, has been available on the NHS since 2022. However, of the 36 children born with MLD since then, only six were diagnosed in time to receive the treatment.
Leah Scott, 37, from Norwich, whose daughter died of MLD at age five, said: ‘We have treatment available through the NHS, and we have the ability to screen for MLD. Children are dying who did not need to die. While America acts to save lives, Britain’s politicians are choosing bureaucracy over our babies.’
Ally Wallace, 35, from Shilbottle, whose daughter Teddi was treated in time but whose other daughter, Nala, was diagnosed too late, said: ‘My daughter lost everything - her mobility, her speech, her future - all because no one tested her at birth.’
Michelle Keyte, 44, from Lincoln, whose son Lucas was diagnosed too late but daughter Penelope was treated in time, directly addressed the Health Secretary: ‘Wes Streeting can save these children with a single signature. I couldn’t look in the mirror knowing I had the power to stop children dying, but chose not to use it.’
The UK NSC suggested a limited trial for MLD testing under a different approval process, a move experts fear could delay widespread implementation for decades. Since 2015, only one condition has been added to the UK's newborn screening programme.
