The parents of a severely disabled five-year-old boy have issued a stark warning that delays in introducing a critical NHS test are costing lives and causing unnecessary disability. Ollie Williams, from England, cannot breathe, eat, or sit without support after a late diagnosis of a devastating muscle-wasting disease.
A Campaign for Change
The Mirror has launched a campaign demanding that spinal muscular atrophy (SMA) be added to the NHS newborn heel prick test. This simple £5 blood check is already routine in most developed nations, including the United States and nearly three-quarters of Europe. In the UK, however, the National Screening Committee has repeatedly postponed a nationwide rollout.
Ollie's parents, Ben and Amy Williams, waited three agonising months for his SMA diagnosis after birth. During those crucial early weeks, motor neurons were left to die off before he could receive life-changing medicine to halt the damage. "The committee's pursuit of the perfect dataset... is directly contributing to unnecessary disability and, in some cases, death," Ben told The Mirror.
The Human Cost of Delay
Ollie lives with Type 1 SMA, the most common and severe form of the genetic condition. His daily reality involves using an oxygen machine at night, being fed via a tube into his stomach, and requiring a £15,000 power chair to move. To clear his airways, he must use a machine twice daily to simulate a cough, as his own throat muscles are too weak.
The family's story echoes that of former Little Mix singer Jesy Nelson, who recently revealed her newborn twins were also diagnosed late with SMA and will likely never walk. Pharmaceutical firm Novartis estimates 33 UK babies are left in a wheelchair each year due to late diagnosis.
"I felt relief but so much guilt for Ollie," said Amy, Ollie's full-time carer, reflecting on the birth of their second child, Hailey. Hailey was screened for SMA only because of her older brother's condition and was found to be unaffected. Amy recalled how medical professionals repeatedly dismissed concerns about Ollie's floppiness and weight loss, with one GP noting only that "his eyes seem very alert."
A Global Outlier
The UK's newborn screening programme is an international anomaly. While Italy checks for 48 conditions and Austria for 31, the UK heel prick test screens for just 10 out of a potential 50 serious health issues. SMA screening is now active in 45 countries, including war-torn Ukraine, but not in England and Wales.
Despite three major treatments, including pioneering gene therapies, becoming available on the NHS since 2019, the screening committee has called for more research. It is planning a pilot scheme where babies in some parts of England will be screened, but not others, to compare outcomes. This means a full national rollout is unlikely before 2031.
In a contrasting move, NHS Scotland has decided to add SMA screening to its routine heel prick test from spring 2026. Ben Williams condemned the continued delays: "It has introduced years of delays to evidence what is already well-established." The family's plea, supported by The Mirror's campaign, is simple: test all newborns to prevent other children and families from enduring the same heartbreak.
