Jesy Nelson Condemns 72% Newborn SMA Screening Rollout After 150,000-Signature Parliament Debate
Updated
Updated · bbc.co.uk · Jun 24
Jesy Nelson Condemns 72% Newborn SMA Screening Rollout After 150,000-Signature Parliament Debate
3 articles · Updated · bbc.co.uk · Jun 24
Summary
72% of UK newborns will get SMA screening from October 2026—three months earlier than planned—but Jesy Nelson said the limited rollout leaves babies in excluded areas facing a "postcode lottery."
150,000 signatures forced Monday's parliamentary debate, where public health minister Sharon Hodgson said only seven of 13 NHS testing labs can currently run the screening and the rest lack equipment.
Nelson, whose twins Ocean Jade and Story Monroe have SMA, said delayed diagnosis changed their lives—requiring round-the-clock care—and argued early treatment could have prevented severe damage.
Scotland began newborn SMA screening in March, while Wales and Northern Ireland have not announced programmes; charities and MPs said the UK is still moving too slowly on a treatable condition.
Why does a baby's postcode determine their access to a life-saving SMA test in the UK?
Is the UK's four-year evaluation for SMA screening ethically justifiable when effective treatments already exist?
England’s Partial SMA Screening (72% Coverage) Faces Public Outcry Over “Postcode Lottery” and Equity Concerns
Overview
On June 22, 2026, the government announced a new Spinal Muscular Atrophy (SMA) newborn screening program in England, but only 72% of babies would be included, leaving 28% untested. This partial rollout quickly drew strong criticism from patient groups, healthcare professionals, and MPs, who called it a 'postcode lottery.' Critics argued that a baby's access to early SMA diagnosis would unfairly depend on where they were born, raising serious concerns about healthcare equality and the risk of delayed treatment for many infants. The decision sparked immediate backlash and highlighted the urgent need for fair access to life-changing screening.