Health Secretary Wes Streeting has pledged to investigate calls for urgent changes to newborn screening, following an emotional plea from former Little Mix star Jesy Nelson.
A Mother's Heartbreaking Revelation
The intervention comes after Nelson, 34, shared the devastating news that her twin baby girls, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with spinal muscular atrophy (SMA). The singer described "the most gruelling three/four months and endless appointments" leading to the diagnosis in a heartfelt Instagram video on Sunday.
Spinal muscular atrophy is a rare genetic condition that causes progressive muscle weakness and paralysis. Crucially, gene therapies exist that can prevent the worst outcomes, but they must be administered at birth before irreversible nerve damage occurs.
The £5 Test That Could Change Lives
Campaigners and affected families are demanding the Government adds a simple £5 blood test for SMA to the standard newborn heel prick test. This screening is already routine in dozens of countries worldwide.
Nelson passionately argued for the change, stating: "The majority of this can be prevented if it’s detected from birth and all it takes is a heel prick... I don’t think anyone understands how much this can change your child’s life. It can literally save their legs... and essentially stop them from dying."
Currently, in England, babies without an older sibling with SMA are often only diagnosed after parents repeatedly report concerns, such as their infant not lifting its head. The Mirror revealed in 2024 that around one baby every week is left paralysed due to NHS delays in screening for the condition.
Government Response and National Disparity
Responding to Nelson's campaign, Health Secretary Wes Streeting told ITV News: "My heart goes out to Jesy Nelson and I think the way she has spoken about what must be an unimaginably frightening situation has been commendable. She’s challenged us to go further on screening, and she is right to do so."
He acknowledged her criticism of slow diagnosis times and confirmed his determination to "look not just at screening for SMA, but to make much better use of genomic medicine."
The UK National Screening Committee is planning a pilot for SMA screening in some parts of England, but a full national rollout could take years. This stands in stark contrast to NHS Scotland, which has already implemented SMA screening for all newborns.
The case highlights a critical postcode lottery in early healthcare intervention. With a swift diagnosis and treatment, the trajectory for babies with SMA can be radically altered, preventing paralysis and saving lives.
