Spinal Muscular Atrophy: Newborn Screening Test

Jim Shannon Excerpts

Monday 22nd June 2026 Westminster Hall

[Lewis Atkinson (Sunderland Central) (Lab)]

I beg to move,

That this House has considered e-petition 755980 relating to spinal muscular atrophy and the newborn screening test.

It is a pleasure to serve with you in the Chair, Mr Mundell, and a privilege to open the debate as a member of the Petitions Committee. I want to begin with two little girls. In May last year, twin daughters were born prematurely to the petitioner, Jesy Nelson, who is a constituent of the hon. Member for Broxbourne (Lewis Cocking). Several months later, they were diagnosed with spinal muscular atrophy type 1, which is the most severe form. Their mother was told that they would, in her words, “probably never walk”.

In January of this year, Jesy chose to share that diagnosis publicly, saying that it would be

“selfish to keep this to myself and not potentially save a child’s life.”

This petition is the result, and I pay tribute to her for the way that she has courageously told her story, using her own unique reach. As a result, the petition was signed by 149,692 people, including 225 of my constituents in Sunderland Central. I was grateful to meet Jesy earlier in Westminster Hall, and I thank her and every family who has turned the hardest experience imaginable into a campaign for other people’s children.

In preparing for this debate, I also met Giles Lomax of SMA UK, Muscular Dystrophy UK, and Professor Francesco Muntoni of the Neuromuscular Centre at Great Ormond Street. I thank all of them for their time, and I also thank the Petitions Committee staff for their help as I prepared for this debate.

SMA is a rare genetic condition that attacks the motor neurones, causing progressive muscle weakness. Around 1,500 people in the UK live with it and about 48 babies are born with it each year—roughly one a week. With type 1 SMA, symptoms appear within the first six months and the effects are profound. Children cannot hold up their heads or sit unsupported; they may be tube-fed and need help to breathe. Until recently, up to 90% of untreated babies either died before the age of two or required permanent ventilation.

I used the past tense there deliberately and happily, because the important fact in this debate is that SMA is no longer untreatable. There are now three disease-modifying therapies in this country, including a one-time gene therapy that did not exist a decade ago. They are approved by the National Institute for Health and Care Excellence, and funded by the NHS. A condition that was too often a death sentence for babies is now one that we can treat.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman for, as he often does, leading this debate on a petition that has generated a lot of interest. I understand that the one of the life-altering gene therapies for SMA, Zolgensma—I hope that I have pronounced it correctly—is available on the NHS, but such gene therapies only work if they are administered before irreversible nerve damage and muscle wasting occur. My hon. Friend the Member for Upper Bann (Carla Lockhart) has been at the forefront on this issue. Does the hon. Gentleman agree that perhaps what we really need is a UK-wide purchasing power for these heel-prick testing kits to be fully extended to all local health trusts without delay? That would make sure that those who have SMA are caught in time.

[Lewis Atkinson]

The hon. Gentleman is absolutely right and I will come on to talk about screening in just a minute.

--- Later in debate ---

[Lewis Atkinson]

My hon. Friend is absolutely right, and I will come on to talk about the potential postcode lottery. I do not believe it is a decision for individual ICBs to make, but a national decision that includes the UK National Screening Committee, which I will come on to.

The screening that I have described is already in place in dozens of countries. Across Europe, 75% of children are screened at birth and since 2024, every newborn in the United States and Canada has been screened. Ukraine managed to begin newborn screening for SMA in the midst of a full-scale Russian invasion. Given that, the petitioners simply ask, “Why is this screening not in place universally here too?”

[Jim Shannon]

On 23 March, Scotland rightly introduced routine screening. In October, babies born in England will benefit from the in-service evaluation framework. Yet families in Northern Ireland do not qualify whatsoever. Does the hon. Member agree that the Government must commit to working across jurisdictions with the Northern Ireland Department of Health to ensure that the evaluation framework is immediately extended to Northern Ireland so that a child’s chances of walking, breathing and surviving are not dictated by the part of the United Kingdom that they are from?

[Lewis Atkinson]

I thank the hon. Member for making one of his excellent interventions. Clearly health is a devolved matter in Northern Ireland and Wales, where screening is also not available, but the hon. Member is absolutely right. It would be difficult to explain to parents anywhere in the UK why this screening is increasingly standard practice internationally but is not available in every nation of the United Kingdom.

The petitioners are clear that all the conditions necessary to begin screening have been met. The test exists, the treatments exist and the evidence tells us that screening would save both lives and money. In the UK, screening is overseen by the independent UK National Screening Committee, which gives recommendations to Ministers. I was unable to meet with the committee in preparation for the debate, but I am sure that the Minister has had the benefit of its advice.

I recognise, as we all must, that the committee’s independence matters. However, its decision making and the way in which it balances risk, evidence and benefit must be subject to ministerial oversight. In this case in particular, there are questions about how those three elements have been balanced, and specifically about how far the committee seemingly required NHS-specific evidence when significant international evidence already exists.

When the National Screening Committee reviewed SMA for potential inclusion in the screening programme in 2018, the committee did not recommend screening, but campaigners like SMA UK did not walk away; they kept on doing the work. New cost-effectiveness modelling commissioned by the screening committee and published last year finds that screening for SMA is likely to be lifesaving and cost-effective.