SMA screening starts in England, but babies in Wales and Northern Ireland left behind
1 October 2026
Today, Thursday 1 October, marks a defining moment for newborn screening as the first laboratory in England will start testing for spinal muscular atrophy (SMA) to assess the feasibility of adding it to the NHS newborn blood spot test on a permanent basis. However, as England follows Scotland, who started screening in March, there are currently no plans in place in Wales or Northern Ireland.
A message from our Chief Executive, Andy Fletcher
Today is a huge moment for our community and there is much to recognise and be proud of as the in-service evaluation (ISE) of newborn screening for SMA begins its staged roll-out in England. Thanks to the tireless campaigning of the SMA community over many years, babies will now be tested for SMA shortly after birth, which will quite literally change lives.
But as we mark this milestone, it’s also a time to reflect. We must not forget that every baby matters. It’s simply not acceptable that a postcode lottery exists in the UK. Babies with SMA in Wales and Northern Ireland deserve the same chance of early diagnosis.
Scotland began screening in March and we now need the governments in Wales and Northern Ireland to commit to screening too. Every baby’s life matters. Every family matters. We know that with a muscle wasting condition like SMA, time is everything. And we will not stop until newborn screening for SMA is available to every baby in the UK. No matter where they live.
The progress we’ve seen to date is a result of years of campaigning by charities, groups, and most importantly, individuals and families in the SMA community. Sharing their stories. Explaining why this matters. Coming together with a shared purpose. This is down to you.
“It’s a massive day for the SMA community, as Birmingham becomes the first laboratory in England to begin testing for SMA through the newborn screening in-service evaluation. This is a significant step forward for families affected by SMA, and a moment the whole community can be proud of.”
Giles Lomax
SMA UK CEO
Why is newborn screening important?
Newborn screening is the fastest and most effective route to a diagnosis of SMA, where early treatment before symptoms appear is vital to minimising irreversible damage and helping children grow up without complex needs.
Babies are being left behind based on where they live
Babies in Scotland are already being screened, and the in-service evaluation (ISE) starting today means that all babies across England will be offered SMA screening by spring 2028 in a phased roll-out.
The first laboratory in England to start screening for SMA is Birmingham on 1 October, followed by Manchester later this year and the remaining 11 screening laboratories will follow. This ISE will assess the feasibility of adding SMA to the NHS newborn blood spot test on a permanent basis.
However, there are currently no plans to start screening newborn babies for SMA in Wales or Northern Ireland.
Every baby deserves the same chance
Babies born today with SMA do not have time to wait. Each day a newborn is not tested for SMA means later diagnosis and devastating consequences for their future.
Scotland has shown it is possible and England is using this blueprint to ensure all babies are screened while the evaluation takes place. Wales and Northern Ireland now need to follow with a clear commitment, funding and plan from the NHS.
“My son, Chester, was diagnosed with SMA type 1 when he was almost six months old. He can’t crawl, can’t walk, can’t even sit up unaided. Our world would be so different if newborn screening had been in place.”
Kasey, Chester's mum
“Dani was diagnosed at 13 months old after seven months of delays. We didn’t know it back then, but with SMA, time is everything. Every day without treatment means muscle is lost forever. Newborn screening could have changed that, and every family deserves the same chance. A postcode should never decide a child’s future.”
Charlie, Dani's dad
“We watched Ezra get weaker while we waited for answers. No family should have to go through that. If SMA were included in the newborn heel prick test, Ezra’s life could have looked so different. I want every baby to have that chance.”
Catherine, Ezra's mum
We’re committed to ensuring equity in newborn screening across the UK
It costs just £5 per baby to carry out newborn screening and identify SMA before permanent muscle damage happens.
We are continuing to work with partners and decision makers to accelerate plans and make sure that every baby in the UK is screened for SMA shortly after birth.
Keep up to date with our SMA newborn screening campaigning
