SMA Newborn Screening: Date announced for Parliamentary Debate

21 May 2026

A date has been announced for SMA Newborn Screening to be debated in Parliament: 6pm on Monday 22 June 2026.

At the start of the year, Jesy Nelson shared her twin daughters’ SMA diagnosis. She went on to start a petition urging the UK government to review the evidence and get SMA added to the NHS newborn screening test. After gaining over 149,000 signatures, the Petitions Committee considered it for debate in Parliament.  

Now that a date has been set, we need as many MPs to attend the debate as possible. If the government sees how important the issue is, they’re more likely to act faster to make sure all babies in the UK are screened for SMA through the existing NHS blood spot test.  

While we’ve been waiting for a debate date, progress has been made, but there’s still more to be done.  

Where are we now? 

• Scotland implemented newborn screening for SMA on 23 March 2026 

• An in-service evaluation (ISE) of newborn screening is set to start in England from October 2026 to evaluate feasibility and effectiveness 

• The ISE will only cover around 70% of all newborns in England and doesn’t include babies born in Wales or Northern Ireland 

Why is the debate in Parliament important? 

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. 

Newborn screening should not be a postcode lottery. And for this reason, despite the recent progress, the debate on the issue remains important. 

The debate in Parliament is an opportunity for MPs to hear about the impact of newborn screening for SMA, the difference it can make and why it should be available to everyone, no matter where they live. That’s why it’s important for as many MPs as possible to attend. 

We’re grateful to Jesy for using her voice and platform to shine a light on this vital issue, as well as the whole SMA community who have been campaigning for change for many years.