Scotland will be the first in the UK to screen for Spinal Muscular Atrophy (SMA) from 2026
I successfully secured the expansion of Scotland’s NHS newborn baby screening programme (the blood spot test) to screen for Spinal Muscular Atrophy (SMA). This will commence in early 2026.
It will transform lives. SMA causes progressive muscle wastage and affects movement, breathing and swallowing.
Screening will allow our NHS to identify SMA at birth and commence treatment swiftly. This will enable babies to develop as they should. I am proud Scotland will become the first nation in the UK to screen all babies for SMA.
I have long campaigned on this issue with the charity SMA UK. I have pursued this matter on several occasions in Parliament and met with Government Ministers.
However, it is my meeting with my constituent Tony Pearson, and his daughter Grayce who lives with SMA- which has made the greatest impact. I pay tribute to both Tony’s fundraising for SMA UK and crucially his public awareness work on SMA screening. Their efforts made a real difference.
March 2024 - First Minister's Questions
I first raised the matter in a question to the First Minister. This was ahead of a meeting with the Health Secretary to discuss extending screening, including Spinal Muscular Atrophy (SMA).
I made it clear that screening for SMA could transform the life of up to 70 children every year by guaranteeing speedy access to treatments.
April 2024 - Meeting Cabinet Secretary
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 eagerly awaited 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.
Feb 2025 - Raising in Parliament
I again raised the need to screen for SMA with the Scottish Government in Parliament. You can read more here
May 2025 - Developing the response
I secured a meeting with the Cabinet Secretary, Neil Gray and Minister Jenni Minto with a range of stakeholders. This included the Giles Lomax, CEO of SMA UK; Dr Sarah Smith, Consultant Clinical Scientist and Director of Scottish Newborn Screening Laboratory; Lucy De'Lemos, Head of Development at SMA UK; and Graeme Rose, Public Affairs Lead at Novartis.
We were able to discuss further what plans for screening could look like.
Sept 2025 - Update from Scottish Government
In September, Neil Gray 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.
Read a copy of the letter at https://www.bob.scot/sma-letter/
Sept 2025 - Government Funding
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