We are delighted to announce that following discussions with the Secretary of State for Health and Social Care, Wes Streeting we welcome the news that the ISE to start screening for SMA will now begin in October 2026 on a staggered roll out, significantly earlier than the previously expected timeline of January 2027. 

Awareness raised by Jesy Nelson, her family and countless members of the community has helped highlight the devastating impact of delayed diagnosis and the need for early detection. Without screening, babies are often diagnosed only after symptoms appear, when irreversible damage has already occurred. 

This acceleration represents a major milestone and one that has been driven by years of sustained work by SMA UK, the SMA Community and other key stakeholders.  

Whilst this news is to be celebrated, the ISE pilot will see an estimated 404,000 babies tested in England but will still see 163,000 newborns untested. In a letter addressed to our CEO, Giles Lomax and Patron Jesy Nelson The Secretary of State said “My officials are still working through the challenges related to extending the ISE to the whole of England and I will keep you both updated of progress in this area. As you know, I’d like to see a full rollout.” 

SMA UK will continue to work closely with the UK NSC, Department of Health & Social Care (DHSC), NHS England and partners to work through the challenges of rolling out across the whole of England,  

Giles Lomax, SMA UK CEO said “Following years of campaigning we are delighted to see the formal announcement that screening for SMA will start in 6 months time in England. This milestone will change the lives of so many diagnosed through the heel prick test. We will continue to work hard to ensure that SMA is rolled out to other parts of England as well as the home nations, no baby should be left behind based on where they live” 

Newborn screening had been expected to follow a longer implementation timeline through the UK National Screening Committee process and the decision to bring this forward reflects the strength and persistence of that collective effort. 

SMA UK has played a central role in pushing for earlier implementation: 

• Building the evidence base by working with clinicians and researchers to demonstrate the life-changing impact of early diagnosis  

• Advocating directly to policymakers and decision-makers, ensuring SMA remained a priority within national screening discussions  

• Mobilising the SMA community, amplifying the voices of families to highlight the real-world consequences of delayed diagnosis  

• Collaborating with partners across the system to support readiness for rollout  

Early diagnosis through newborn screening enables babies to access treatment before symptoms develop, dramatically improving outcomes. Evidence from other countries shows that babies identified at birth can grow up walking, breathing independently, and living healthier lives. 

This progress shows what is possible when families, charities, clinicians and policymakers come together to drive change. 

However, our work is not done. SMA UK will continue to work with governments and health systems across all four nations to ensure the programme is implemented quickly, consistently and equitably so that every baby has the best possible start. 

This news follows on from the successful implementation of screening in Scotland on the 23rd March 2026.  

Read more about newborn screening for SMA here.