Scotland will be the first in the UK to screen for Spinal Muscular Atrophy (SMA) from 2026

The Scottish Government is “transforming lives,” after the Health Secretary announced Scotland will be the first nation in the UK to introduce a pilot test of screening for newborns for Spinal Muscular Atrophy (SMA).

SMA causes progressive muscle wastage and affects movement, breathing and swallowing. From the start of next year, newborn babies in Scotland will be screened for the rare condition.

I have long campaigned on this issue with the charity SMA UK.

This news will be transformative for the families affected by this incredibly rare but serious condition. 

Early screening has the potential to detect this serious illness before symptoms develop, thus allowing earlier treatment and better life outcomes. I am so proud to see Scotland at the forefront of its development. 

I want to pay tribute to the work of SMA UK and my fellow campaigners who have been crucial in reaching this milestone. 

I have raised this matter repeatedly in Parliament and I am delighted the SNP Government has listened to what campaigners have called for. By investing in this pilot Scotland is showing clear leadership and helping to ensure the best possible care and support for babies and families. I hope we can build on that work going forward.

The Scottish Government is providing funding of £95,000 towards the pilot - read more at: https://www.parliament.scot/chamber-and-committees/questions-and-answers/question?ref=S6W-40341 

Development of work on this campaign

September 2025

In September, Neil Grey MSP, Cabinet Secretary for Health and Social Care, wrote to me to advise that the Scottish Government would start screening newborn babies from next year.

You can read this letter here

February 2025

I have raised the need to screen for SMA with the Scottish Government in Parliament. You can read more here or watch the video below

April 2024

I met with the Cabinet Secretary for Health and Social Care to let him hear more about the impact of Spinal Muscular Atrophy, the significant benefits of catching the condition early, and the potential opportunities for Scotland to advance this matter.

Together with clinicians and SMA UK we had a good conversation and a number of options were raised.  It was a powerful case that was made for further action in this area.

The Cabinet Secretary committed to exploring how the Scottish Government and NHS Scotland might be able to assist in this matter.

I am eagerly awaiting the Scottish Government's response, looking forward to their thoughtful consideration of the findings and the potential impact on the extension of newborn screening to include SMA.

March 2024

Following my recent question to the First Minister, I will soon meet with the Health Secretary to discuss extending this, including Spinal Muscular Atrophy (SMA). Screening for SMA could transform the life of up to 70 children every year by guaranteeing speedy access to treatments.