Yesterday, Monday 22 June 2026, newborn screening for spinal muscular atrophy (SMA) was debated in Parliament.
While it was encouraging to hear many MPs speaking passionately about the issue, there is still no clear commitment to end the postcode lottery and ensure all babies in the UK are offered screening for SMA.
The parliamentary debate was a result of a petition started by former Little Mix singer Jesy Nelson shortly after her twin daughters’ SMA diagnosis. Together with other individuals, families and campaigners, Jesy has been urging the UK government to review the evidence and get SMA added to the existing NHS newborn screening test.
Opened by Lewis Atkinson MP, a member of the Petitions Committee, the debate was well attended by MPs from different political parties and watching on were Jesy Nelson and representatives from Muscular Dystrophy UK and the charity SMA UK.
In addition to Lewis Atkinson speaking about the current situation around screening and treatments, other MPs spoke powerfully, sharing stories from their constituents living with SMA and highlighted concerns about a postcode lottery.
“Little Charlie in my constituency … was treated with gene therapy after being diagnosed … He is now living his life, but in a wheelchair. Had he been screened at birth he might have had treatment sooner and he might be walking right now.”
“I was alarmed to discover from parents that Portsmouth will not be included in the roll-out of the SMA screening this October. That means that babies born in my city will miss that early diagnosis and will face potentially devastating conditions that early treatment might well have saved them from.”
With a condition like SMA, time is everything. There’s a treatment that can change lives, but for the best outcome, early diagnosis shortly after birth is crucial.
A debate in parliament helps the government to see how important the issue is, hear about the impact of newborn screening for SMA, the difference it can make and why it should be made available to everyone.
Alongside SMA UK, we sent briefings to MPs ahead of the debate to help inform their contributions.
“A baby born in one postcode will be screened, treated early and may walk, but a baby born in another postcode in the same week will not, and by the time anyone knows it may be too late.”
During the debate, Lewis Atkinson also quoted Professor Francesco Muntoni, one of our Research Vice Presidents, who described a trial that deliberately leaves some babies unscreened as “unethical”.
Areas in England where newborn screening will NOT be offered from October:
The Minister for Public Health and Prevention, Sharon Hodgson responded to the points made by MPs on behalf of the UK government. She acknowledged that SMA is ‘a cruel and devastating condition’ and thanked families for sharing their experiences and campaigners for working to ensure their voices are heard.
While she assured everyone that the conversation will not stop, she did not commit to extending the ISE to include all babies in England. We also still haven’t heard anything about newborn screening for SMA in Wales or Northern Ireland.
The debate was a positive step, and it was encouraging and moving to hear many MPs speaking passionately about SMA newborn screening and ensuring the voices of their constituents were heard. That is thanks to people campaigning and sharing their experiences.
Together we made them listen. But there is still more to be done.
Babies should not miss out on vital early diagnosis when the evidence is clear. Other countries in the world have shown what’s possible and the life-changing impact newborn screening for SMA can have. We need to act now.
We’ll continue to push the UK government to roll out screening in every part of the UK. No more postcode lottery.
We’re grateful to our partners and the whole SMA community, who have been campaigning for change for many years. As well as Jesy for using her voice and platform to highlight this vital issue and raise awareness of SMA.
