Every newborn baby in England to be screened for SMA

16 July 2026

Following last month’s debate in Parliament, today, Thursday 16 July 2026, the UK government announced that newborn screening for spinal muscular atrophy (SMA) will be fully rolled out across England. This means that every baby in England will get tested for SMA while a national evaluation programme runs to see if the condition should be permanently added to the NHS newborn blood spot test (formerly called the heel prick test).

Our Chief Executive, Andy Fletcher, said: “The decision to fully roll outnewborn screening across England is a landmark moment for the SMA community and the many partners who have spent years working to make it a reality. 

“Newborn screening should never be a postcode lottery. Which is why we’re delighted that, following campaigning and pressure from politicians of different parties, the UK government has committed to ensuring every newborn in England will be screened for SMA while the evaluation programme runs. 

“This is a huge achievement for our community and everyone who has come together to campaign. We know that with a condition like SMA, time is everything, and this development will be life-changing for future generations of children born with the condition. 

“While this is positive news, we remain concerned that there are still no plans to make newborn screening for SMA available in Wales or Northern Ireland. We’ll continue to push both Welsh and Northern Ireland governments to roll out screening in their nations so that it becomes available in every part of the UK. No baby should miss out on vital early diagnosis due to where they live.” 

What has the UK government said?

During the debate in UK Parliament on Monday 22 June, MPs from different political parties and different nations spoke passionately about newborn screening, sharing stories from families in their constituencies who live with SMA.

Some MPs also raised the issue of the current postcode lottery of the in-service evaluation (ISE) starting in October 2026, which will only cover 72% of newborns in England.

At the time, the Minister for Public Health and Prevention, Sharon Hodgson 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.

Since then, there have been further meetings with the Minister, where we and our partners have been able to provide additional information and evidence to support the case for the SMA newborn screening evaluation programme to include all newborn babies in England.

James Murray, Secretary of State for Health and Social Care for the UK government 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.”

What is the timeline?

From October 2026: The UK government had already committed to an in-service evaluation (ISE) to evaluate the feasibility of adding SMA to the NHS newborn blood spot test. The ISE will begin this October in the seven laboratories in England that already have the equipment needed to start screening for SMA. Around 72% of newborns in England will be included.

From October 2027: Today’s commitment by the Department of Health and Social Care (DHSC) means that the remaining six screening laboratories in England (covering the regions of Bristol, Cambridge, Leeds, Liverpool, Oxford and Portsmouth) will start offering screening from October 2027.

The DHSC will seek investment to fund this rollout to ensure that 100% of newborns in England have access to newborn screening for SMA.

Does this mean that all babies in the UK will now be screened for SMA?

Unfortunately, no. Scotland led the way, introducing a pilot newborn screening programme for SMA on 23 March 2026, and today’s announcement relates to babies born in England. But there are still no plans to introduce newborn screening for SMA in Wales or Northern Ireland. 

What happens now?

Babies in Scotland are already being screened for SMA at birth, and the ISE will begin across England this autumn with seven labs starting to test babies for SMA from October 2026 – three months ahead of the original schedule. It will take a little longer to ensure all babies in England are tested, but the DHSC are seeking investment to fund this rollout for 2027.

This decision is a huge achievement, and it is thanks to our partners and the whole SMA community, who have been campaigning and sharing their experiences for many years.

Together we made the UK government listen. But we can’t stop now. There is still more to be done to ensure that no baby in the UK misses out on vital early diagnosis.

The evidence is clear – other countries have shown what’s possible and the life-changing impact newborn screening for SMA can have. Wales and Northern Ireland need to follow Scotland and England at the earliest opportunity.

“Our focus now is on ensuring equity across the UK so that families in all four nations can benefit from newborn screening for SMA. We will continue campaigning until there is no more postcode lottery and screening is available across the UK on a permanent basis.”

Andy Fletcher 
Our Chief Executive