Member's statement: Spinal Muscular Atrophy: Newborn Screening
Member's statement by Ms Cheryl Brownlee on .
- MLA
- Ms Cheryl Brownlee
- Party at the time
- Democratic Unionist Party
- Date
- 20 October 2026
- Type
- Member's statement
- Business
- Members' Statements
- Heading
- Spinal Muscular Atrophy: Newborn Screening
- Assembly identifier
- Official Report component 5798365
Read the official Assembly record
Text
This morning I highlight the important case for introducing newborn screening for spinal muscular atrophy (SMA) in Northern Ireland. SMA is a rare inherited condition that affects the nerves that control muscle movement. It can cause progressive muscle weakness and, in its most severe forms, can affect a baby's ability to sit, swallow or breathe. The challenge is that the symptoms may not be apparent at birth but damage can begin early. Treatment can improve outcomes and identify the condition before symptoms develop, which makes a critical difference. Newborn screening offers a way to identify affected babies promptly. Northern Ireland already offers a heel-prick blood test to check for a number of serious conditions. The question now is whether SMA can be added to that test, with the right clinical pathways in place to confirm a diagnosis and provide that timely specialist care. There is a growing difference across the United Kingdom. Scotland began screening in March, and, this month, England began a phased service evaluation. The Republic of Ireland has also begun screening through its newborn blood spot programme. Northern Ireland has not yet started such an evaluation. That means that where a baby is born can affect whether SMA is identified through the newborn screening programme. I welcome the work of Spinal Muscular Atrophy UK, Muscular Dystrophy UK and Novartis UK to bring the issue to the Assembly's attention. Their drop-in session is on Monday 2 November in room 115, where they will set out the case for screening and give Members the opportunity to hear more. I encourage all colleagues to attend the session and to engage with the clinicians and campaigners in order to better understand the opportunities for improved outcomes for patients in Northern Ireland. I also call on the Health Minister to work with the relevant experts and screening bodies in order to assess how newborn screening for SMA can be introduced here, including the evidence, the cost and the care pathways that are required. Like those of many others here, my office has received many emails on this important issue. Every family deserves the chance of early diagnosis and timely treatment for their child, wherever they live in the UK. I hope that we can bring the issue forward and make a real difference for babies and families in Northern Ireland.
388 words. Text as published by the Northern Ireland Assembly.
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