Former Little Mix singer Jesy Nelson has welcomed the announcement of a full rollout of spinal muscular atrophy (SMA) screening for newborns across England, describing it as a “day of hope.” Nelson began campaigning for universal screening after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with the rare genetic condition, which causes progressive muscle wastage.
National Screening Programme Expansion
The Department of Health and Social Care confirmed on Thursday that the national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme starting from the end of this year. The simple heel prick blood test, administered shortly after birth, will be offered to hundreds of thousands of babies.
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.”
Ending the Postcode Lottery
In a previous Instagram post last month, Nelson expressed frustration that the initial October rollout would “only cover 72% of England,” calling it a “postcode lottery.” She said: “That means some babies won’t be screened simply because of where they live. A postcode lottery like that just isn’t fair. Every baby deserves the same chance, every baby’s life matters.” The new development ensures all parts of England will be covered by the evaluation, which will inform future recommendations from the UK National Screening Committee.
Impact of SMA and Early Treatment
SMA can leave babies unable to sit up, crawl, or walk. In the most severe cases, it stops them from breathing or swallowing. However, early treatment can delay the progressive nature of the illness and help children live longer. Giles Lomax, chief executive officer of Spinal Muscular Atrophy (SMA) 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. 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. We are incredibly grateful to the families, clinicians, researchers, supporters and campaigners who have helped us reach this point, and we look forward to the day when every newborn across the whole of the UK is offered this simple, life-changing test.”
Government and Health Secretary Response
Health Secretary James Murray 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.”
Funding and Future Plans
The Department of Health and Social Care is seeking £5 million of investment to expand the evaluation. Scotland is also establishing a similar screening programme drawing on funding from the private sector.
