1st October 2026 marks a day the SMA community has been waiting for. After years of campaigning newborn screening for Spinal Muscular Atrophy (SMA) has finally becoming a reality in England. 

Today, the West Midlands screening laboratory at Birmingham Women’s and Children’s NHS Foundation Trust has become the first laboratory in England to begin screening newborn babies for SMA as part of the national in-service evaluation (ISE). Over the next 12 months, a further 6 sites will be activated on a phased roll out as part of the ISE across the country. 

Further to the announcement in July the programme will then expand in October 2027 to the rest of England. 

Dr Philippa Goddard, Consultant Biochemist & Director of Newborn Screening at BWC NHS Foundation Trust, said:  

“I am immensely proud of the commitment and hard work shown by the entire team in preparing for the introduction of SMA screening. Their efforts have ensured we are ready to deliver this important service. 

“As the first laboratory in England to begin newborn screening for SMA, we can help identify babies with the condition before symptoms appear. Earlier diagnosis can enable faster access to specialist treatment, which can make a life-changing difference and significantly improve outcomes for children and their families.” 

Why newborn screening matters 

SMA is a genetic condition that can cause progressive muscle weakness and can affect a baby’s ability to move, swallow and breathe. In its most severe form, SMA can progress rapidly during the first months of life. But we now live in a very different world from the one many SMA families knew when their children were diagnosed. 

Treatments have transformed what is possible for babies and children with SMA. NHS England reports that early treatment can significantly change outcomes, and that evidence from the SMA REACH UK programme has demonstrated the benefits of treatment for children with SMA. 

The timing of diagnosis incredibly important. A baby with SMA can look well at birth and parents may have no reason to suspect that anything is wrong. By the time symptoms become noticeable, valuable opportunities for treatment may already have been lost. Newborn screening offers the possibility of identifying SMA before symptoms begin. 

Instead of waiting for a baby to become unwell, screening can give families and clinical teams the opportunity to know much earlier meaning earlier referral, earlier specialist assessment and, where appropriate, earlier access to treatment. The difference between diagnosis after symptoms appear and diagnosis before symptoms appear can be profound.  

But we also need to talk about the postcode gap 

While we celebrate Birmingham going live, we cannot ignore the difficult reality that comes with this announcement. 

The first of the seven laboratories identified to start the in-service evaluation already have the correct equipment and infrastructure needed to begin screening today and therefore that means for a period of around 12 months, where a baby is born in England will determine whether SMA screening is available through their local identified newborn screening laboratory. 

We also recognise that the In-service evaluation does not cover both Wales and Northern Ireland.  So, while October 2026 represents an enormous step forward, it is also important to acknowledge that the rollout will initially create an inequality in access and our campaign to introduce UK wide screening continues. 

Progress and inequity can exist at the same time 

The UK National Screening Committee has explained that the evaluation is designed to gather evidence about the feasibility, acceptability, effectiveness and cost-effectiveness of SMA screening within real NHS services. The evaluation will help inform a future recommendation about how SMA screening should continue. 

That evidence is important, but so is equity. The SMA community should not have to choose between supporting the evaluation and speaking honestly about the inequalities that exist while it is being implemented. 

What this means for SMA UK 

For SMA UK, this is another significant milestone in a much longer journey. The organisation has been part of years of campaigning alongside families, clinicians, researchers and partner organisations to push for newborn screening. 

SMA UK CEO Giles Lomax said,  

“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. After years of campaigning by the community, it is incredibly powerful to see this work becoming a reality and I would like to say thank you to everyone for making this come to fruition including the laboratory staff that have work tirelessly. 

Thousands of babies each year will have the opportunity to be diagnosed earlier and access life-changing treatment before irreversible damage occurs. This is a significant step forward for families affected by SMA, and a moment the whole community can be proud of.  As a charity, we will continue to stand alongside everyone living with SMA, providing support, information and a voice for the SMA community at every stage of life. Today, we celebrate progress, while remembering that every person living with SMA matters.” 

Jesy Nelson, SMA UK Patron and Campainger said:  

“Seeing the first site go live today is honestly quite overwhelming. When Ocean and Story were diagnosed with SMA, I learned very quickly just how important time is and how much early diagnosis can change a child’s future.
When I joined campaigning for newborn screening, this was exactly what we were fighting for. Today, stops it being just an announcement but now a promise babies will actually start being screened in England.  I’m incredibly grateful to every family who shared their story, everyone who signed the petition, and the charity, doctors and campaigners who have fought for this for so long.
There is still more work to do as screening is rolled out across the country, but this is a huge moment. Knowing that babies could now be diagnosed and treated earlier, and that families may have a very different experience because of it, means more to me than I can put into words.” 

Health and Social Care Minister, Alison McGovern, said

“This programme is a vital step forward for the treatment of spinal muscular atrophy, and it is a tribute to all the families who have campaigned and fought for this day.

“The early detection and treatment of SMA can be the difference between a newborn child living a full, healthy life, or quickly losing the ability to move or breathe.

“We promised to speed up this rollout, and I’m glad that we’re delivering it three months ahead of schedule. This will mean more babies getting the earliest possible chance of treatment, before this cruel disease takes hold.”
01 October 2026

Read more about newborn screening here

Read more on the NHS England website here

Read UK NSC’s Blog here