Health Secretary Wes Streeting Admits Personal Struggle Over SMA Screening Delays
Health Secretary Wes Streeting has openly confessed that he finds it profoundly difficult to look parents like former Little Mix singer Jesy Nelson in the eye over the ongoing lack of newborn screening for spinal muscular atrophy (SMA). In an exclusive interview with the Mirror, Mr Streeting revealed the emotional weight of discussing this devastating muscle-wasting disease with affected families, particularly when delays in diagnosis can lead to irreversible consequences.
The Campaign for a £5 Blood Test on the NHS
The Mirror, alongside Jesy Nelson, is campaigning vigorously for a simple £5 blood test for SMA to be incorporated into the NHS heel prick test administered to all newborns. Currently, babies are only diagnosed after irreversible muscle deterioration has occurred, often leaving them wheelchair-bound for life. Jesy Nelson's own twins were diagnosed at six months old, despite multiple visits to healthcare professionals, and she has been told they will likely never walk.
Mr Streeting acknowledged the urgency, stating: "It's very hard to look a mum in the eyes when she is going through something like that and tell her that the situation we have got now is acceptable - because it isn't." He emphasized that three treatments are available on the NHS that can effectively cure SMA if administered at birth, but timing is critical to prevent muscle damage.
Current NHS Pilot and Ethical Concerns
The Health Secretary has questioned the UK National Screening Committee about modifying a planned NHS pilot to include screening all babies for SMA. Under current proposals, one-third of newborns in England—approximately 163,000 annually—would not be tested to serve as a "control group" for comparison. Experts have criticized this approach as unethical, given the availability of treatments and international evidence supporting universal screening.
Mr Streeting explained: "We are actively looking at this but it's not straightforward. It helps that there is a trial up and running, but we know, and Jesy has challenged us on this, that trial when up and running won't screen all babies. And there is a risk that other parents will have to go through what Jesy is going through." He is pushing his team to explore expanding the pilot's reach to accelerate diagnosis.
International Comparisons and Devolved Nations' Actions
While the US and most of Europe already screen for SMA, the UK lags behind. NHS Scotland has decided to implement newborn screening for SMA from the spring, adding it to their routine heel prick test. In contrast, babies in Wales and Northern Ireland will not be screened under current plans. The full rollout in England is not expected before 2031 on the current schedule, a timeline that campaigners argue is unacceptable.
Giles Lomax, chief executive of SMA UK, expressed encouragement at Mr Streeting's commitment but stressed the urgency: "Every moment really matters for these children as each month another four babies are diagnosed with SMA... that clock is ticking until screening is introduced."
Personal Commitment and Future Steps
Mr Streeting shared a personal connection to the issue, citing a constituent whose daughter, once given a life expectancy of just two years, is now thriving thanks to an early clinical trial. He vowed: "I feel a personal responsibility to not just Jesy, but to the SMA community that have called for action, to make sure that I leave absolutely no stone unturned." He promised to report back to Jesy Nelson, the SMA community, and the Mirror as soon as more action is taken.
The Health Secretary concluded by affirming his dedication to evidence-based decisions, while challenging his team to expedite processes. With families affected by SMA awaiting swift action, the pressure mounts on the NHS to align with global standards and prevent further heartache for parents across the UK.
