Spinal Muscular Atrophy: Newborn Screening Test

Debate between Lewis Atkinson and Jim Shannon

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.

Progression of Bills through Parliament

Debate between Lewis Atkinson and Jim Shannon

Monday 8th June 2026 Westminster Hall

[Lewis Atkinson]

Yes, I agree. I will come on to talk about future consideration of the legislation.

The arguments against the process—that the consideration was somehow flawed—were widely debated before Third Reading, and the Commons reached a conclusion on that. All MPs had to make a judgment, independent of the Whips, on whether they wanted to pass the legislation.

Sophie and Nathaniel were in the Commons Gallery on the day of Third Reading. They, like people across the country, thought a clear decision had been made: that assisted dying reform would become law, with significant safeguards, subject to some further iteration in the Lords, if required, including an extended implementation period of up to five years to allow any other considerations to be worked through. It was the approach of the House of Lords, specifically a small number of peers, that outraged Nathaniel, Sophie and the other petitioners.

[Jim Shannon (Strangford) (DUP)]

It may only have been a small number of peers who tabled amendments, but many others wished to put their names to them. Does the hon. Gentleman not recognise the will of the House of Lords? I think 170 peers had real concerns about the legislation. The role of the House of Lords is to ensure that those concerns are looked at, and it is fully entitled to do so. On this occasion, it was not able to improve the legislation in the timescale provided. Does the hon. Gentleman not accept that?

[Lewis Atkinson]

It is always a pleasure to receive an intervention from the hon. Gentleman; he is much more experienced in this place than I am. However, over 16 days of debate in the House of Lords, the will of the Lords was not tested once. There were no Divisions. If the will of the peers was so overwhelmingly against the Bill, the Lords could have divided on Second Reading if the House had wished; it chose not to.

The opponents of the Bill in the Lords went out of their way, it is suggested, to avoid Divisions. Some amendments may have passed, but a great number of others would probably have been defeated. With more than 1,200 amendments tabled, and 1% of peers tabling 60% of them, that small number of peers took up more than a third of the total speaking time.

--- Later in debate ---

[Lewis Atkinson]

I will finish my point. Fundamentally, the question is whether we can achieve social change in this country through parliamentary means, or not.

I will just go back to how Sophie, the key petitioner, felt. She summed it up in the following way:

“I’m living with incurable cancer and I know how precious time becomes when you’re facing the end of life. Watching Parliament waste that time because of the actions of a tiny number of unelected politicians is heartbreaking”.

It is not that the House of Lords was improving the Bill. It may have been in some cases, but the fact that the House of Lords, in 16 days, did not divide once and decide on one amendment—

[Jim Shannon]

Will the hon. Gentleman give way?

[Lewis Atkinson]

I have already given way to the hon. Member.

Medical Training (Prioritisation) Bill

Debate between Lewis Atkinson and Jim Shannon

2nd reading
Tuesday 27th January 2026 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

As others will know, I have raised this matter a number of times in the Chamber. In Wales, for example, the health service pays students’ fees and trains them, and students then have an obligation to stay with the Welsh health service for a period of time. One of my constituents, whom I know well, did just that. She went there, received training and stayed there. What happened, of course, is that she met someone in Wales who she fell in love with, and now she wants to stay there, so we will lose her in Northern Ireland. The point I want to make is this: if paying the fees retains the staff in Wales, should we not also do that in Northern Ireland, Scotland and England? We could do so in this Bill.

[Lewis Atkinson]

There is some merit in the hon. Gentleman’s proposal, not just for medical training but across the clinical workforce. As Members have acknowledged, we pay significant sums of public money training clinical staff, but the graduates incur significant student debt. If a UK-trained undergraduate student decides to work abroad, the UK taxpayer will have invested a significant amount in their training, and that is then lost. It strikes me that there is an opportunity for the Government to think about the sort of incentive that the hon. Gentleman describes as part of wider workforce planning.

That is pertinent to my next point about the importance of the medical workforce reflecting our wider society, particularly the working class communities of the north-east of England. I want to ensure that a young person doing well at a state school in Sunderland has as much encouragement and access as anyone else in the country to study medicine and, crucially, progress through the ranks to the highest grades. We have heard some talk of international medical schools, but I can absolutely assure Members that there are not state school-educated kids in Sunderland thinking that they will pay privately to study in Grenada or anywhere else.

As the Secretary of State rightly pointed out, there have been welcome improvements on diversity in the NHS, but we often fail to consider socioeconomic background in that. The first line of the NHS constitution states:

“The NHS belongs to the people.”

But sometimes it can feel like it is staffed by a pretty unrepresentative slice of the people, particularly in medical roles.

In that spirit, I recognise the excellent work of the University of Sunderland medical school, which has placed widening access at the heart of its mission. Building on a 100-year history of wider clinical training, the school opened in 2019, shortly before the covid-19 pandemic—a period that starkly exposed our over-reliance on overseas recruitment and underlined the importance of growing our own workforce. By 2022, 47% of the University of Sunderland’s intake were local students, and it now ranks sixth in the UK for student satisfaction.

However, it is no good universities like Sunderland in my constituency doing excellent work on widening participation at recruitment stage if when we get to foundation training and specialty training those students are disadvantaged in competition. In my view, the Bill will help to ensure that talent nurtured by institutions like the University of Sunderland is retained and prioritised for the benefit of our NHS.

I highlight that medical schools such as Sunderland are increasingly placing a huge emphasis on training their medical students in a multidisciplinary environment alongside the trainee nurses and trainee pharmacists of the day, so that they are prepared to work in the multidisciplinary environment that our NHS rightly demands. I am not sure that all international undergraduate courses are always so advanced, so it is right to prioritise this UK-based training approach for the multidisciplinary ethos of the NHS in the future.

Other Members have mentioned the wide variation in specialist training fill rates, and GP recruitment has been mentioned as part of that. It is also worth saying that the national statistics about specialty training mask significant regional variations. The GP specialty training fill rate has been as low as 62% in the north-east of England, and as we have heard, over 73% of applicants for GP specialty training in 2023 were international. That has a disproportionate effect in regions like mine. My constituents want to have the confidence that there will be a stable GP workforce as part of our community for the long term. I cannot tell them in all candour that the status quo delivers that, so we must make changes of the type that the Bill sets out.

I hope that by introducing effective, regulated training pathways, the Bill will improve retention and strengthen workforce planning in our communities, including in areas such as women’s health, where training provision has not kept pace with rising demand. When I look at the shape of the NHS elective waiting list, it is no coincidence that some of the trickiest waiting time problems are in specialties such as gynae, where we have had recruitment and training challenges in recent years.

To close my remarks, I re-emphasise the link between capacity and demand, which I hope the Minister will touch on in advance of the workforce plan. Will she also say a little about the medical training review and the phase 1 report for NHS England and how the Government will work with that?