Scotland
Screening in placeActive since 2021
Every baby born in Scotland is screened for SMA as part of the newborn bloodspot programme.
Newborn screening
The test that could change everything
SMA can now be treated, and treatment works best when it starts before symptoms appear. A simple addition to the newborn heel prick test could give every baby in the UK that chance.
The heel prick test
5 days
The age at which every UK baby already gives a bloodspot sample. Adding SMA to that same test is the heart of the campaign.
Early diagnosis means earlier treatment.
Why it matters
Motor neurons cannot be replaced
Once motor neurons are lost to SMA, they are gone. That is why timing matters so much. If SMA is found before symptoms start, treatment can begin before significant damage, and the results can be dramatically better.
Clinical trials in pre-symptomatic infants, including NURTURE for Spinraza and SPR1NT for Zolgensma, showed outcomes almost indistinguishable from unaffected peers. Children who might otherwise have been profoundly affected by type 1 SMA are walking and attending school.
The case for screening
- Motor neurons lost to SMA cannot be replaced, so treatment works best before symptoms appear.
- The heel prick test is already given to every UK baby at around 5 days old. SMA can be added to the same sample.
- Trials in pre-symptomatic babies, including NURTURE and SPR1NT, showed outcomes close to those of unaffected peers.
- Screening costs very little per baby, while early treatment can reduce the need for lifelong support.
Across the UK
Where each nation stands
Newborn screening is devolved, so the position is different in each part of the UK. These were the latest published positions when this page was updated.
England
Review pendingUnder review
A formal proposal was submitted to the UK National Screening Committee in early 2026. A recommendation is pending.
Wales
Awaiting decisionPending
Wales is awaiting the UK NSC recommendation and how it would apply to Welsh NHS policy.
Northern Ireland
Awaiting decisionPending
Northern Ireland is also awaiting the UK NSC recommendation before deciding on its own programme.
Scotland added SMA to its newborn bloodspot programme in 2021. In England, the UK National Screening Committee is considering a formal proposal submitted in early 2026. Wales and Northern Ireland usually follow UK NSC recommendations.
Every baby deserves this chance
Screening costs very little per baby tested. Early treatment costs far less than the lifelong support needed when SMA progresses untreated. Most importantly, every baby diagnosed early has a chance at a life transformed.
Information adapted from TreatSMA’s newborn screening page. Screening policy can change, so check the latest position with your health visitor, midwife or clinical team.
More help and support
Visit TreatSMA for the bigger picture
TreatSMA is a volunteer led UK charity with detailed, up to date information on living with SMA. If you want to understand the condition further, find community groups, or get help with wellbeing and benefits, their website is the place to start.
We are proud to work alongside other organisations in the SMA community. Whatever you are facing, you do not have to work it out alone.
Visit TreatSMATreatSMA is a separate charity. Their site also has information on treatments, newborn screening, news and a business directory.
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