SMA Newborn Screening to Begin in England
Every baby in England will now be tested for Spinal Muscular Atrophy (SMA) from birth following a high-profile campaign by former Little Mix singer Jesy Nelson. The screening programme will start in October 2026, three months ahead of schedule, with full rollout across all newborn screening laboratories by 2027.
Jesy Nelson's Personal Campaign
Jesy Nelson, 35, discovered that her twin daughters Ocean Jade and Story Monroe had Type 1 SMA after several months of tests. The severe genetic condition progressively kills muscle cells and can limit a baby's life expectancy to two years if left untreated. Since the diagnosis, Nelson campaigned for NHS newborn screening for SMA, gathering more than 150,000 signatures on her online petition.
Government Response and Rollout
Last month, the government announced a staggered launch in certain areas, which Nelson called "outrageous," saying: "You are basically telling me that if you live in a certain postcode, you're not as important." The government has now committed to making screening available nationwide from autumn, with labs starting testing from October 2026. The Department of Health and Social Care will expand screening as part of an evaluation programme, working with partners to deliver the rollout ahead of schedule.
Impact of Early Diagnosis
SMA can leave babies unable to sit up, crawl or walk, and in severe cases, stops them breathing or swallowing. Early diagnosis through the heel prick test, which collects a small blood sample shortly after birth, allows for treatment that significantly improves outcomes. Giles Lomax, Chief Executive Officer of Spinal Muscular Atrophy UK, said: "After years of campaigning by the SMA Community and our partner organisations, this is a hugely important step forward. When newborn screening for SMA begins later this year in October, thousands of babies will benefit from earlier diagnosis and access to life-changing treatment."
Statements from Campaigners and Officials
Jesy Nelson said: "After years of campaigning, it means so much to see the heel prick test for SMA begin rolling out from October, with implementation continuing throughout 2027 until every newborn screening laboratory across the UK is offering the test. Today is a day of hope. Knowing that future families will have access to early diagnosis and the opportunity for the best possible outcomes is something I’m incredibly proud to have supported. This is a victory for every family affected by SMA, whilst it can’t change the future of our children, I know it marks the beginning of a brighter future for future SMA families."
James Murray, Secretary of State for Health and Social Care, said: "No parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference. This expansion means babies across England will be tested from birth, giving them the best possible chance of a full and healthy life, and another step in the right direction as we do all we can to reduce health inequalities. I'm in awe of the campaigners who've worked tirelessly to raise awareness of this rare but very serious genetic condition. We're moving faster and rolling screening out more widely to ensure children get the best treatment from the earliest possible moment."
Comparison with Scotland and Future Plans
A similar programme has already been established in Scotland, drawing on private sector funding. The Department of Health and Social Care will take a comparable approach in England, working collaboratively with partners to deliver the rollout ahead of schedule. Giles Lomax added: "We are delighted to see the confirmation that the remaining six screening laboratories will begin screening from October 2027, this demonstrates a clear commitment to making newborn screening available across England. No family should face a postcode lottery when it comes to a condition where every day without treatment can lead to irreversible loss of motor neurons."
