21 January 2026
SDLP West Tyrone MLA Daniel McCrossan has called on the Health Minister to examine screening for Spinal Muscular Atrophy (SMA).
It comes after the rare condition was raised by singer Jesy Nelson whose twins were born with SMA.
The Health Minister has said that Northern Ireland is guided by the UK National Screening Committee (NSC), which recommended screening wasn’t needed in 2018.
There are plans for a committee review through an In-Service Evaluation, though it has not yet begun.
West Tyrone MLA Daniel McCrossan said:
“SMA, though rare, has been brought into sharp focus in recent weeks through the case of Jesy Nelson and her twins who were born with this condition. We have also heard parents in Northern Ireland bravely speak out about their own experiences and the impact a lack of screening has had on their children.
“We know that with SMA, early diagnosis is critical. Identifying the condition as early as possible allows treatment to begin sooner and can significantly slow progression and reduce harm. After becoming aware of this case, I contacted the Health Minister to ask if there were any plans to introduce screening here and around potential costs involved. He directed me to the UK NSC who have made no firm commitments and progress looks some way off.
“I’m aware that in Scotland there is a pilot screening project underway and that the Welsh Government and the UK Health Minister Wes Streeting are also now considering the issue. While thankfully the numbers affected here are small, for families and children impacted by SMA the consequences are devastating and life-threatening.
“The North should not lag behind other parts of these islands when it comes to introducing screening and I will continue to press the Minister for more information and progress.”