Spinal Muscular Atrophy: Newborn Screening Test

[David Mundell in the Chair]

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.

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.

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

It is a pleasure to serve under you, Mr Mundell. My hon. Friend is talking about lifesaving treatments. One of my constituents has a niece who was born with SMA type 1 and previously would have been at risk of dying. My constituent was told that her niece was unlikely to live past the age of two, but because of the advances in treatment that my hon. Friend has just spoken about, she has just celebrated her ninth birthday. However, she did have to be fed through a stomach pump. Does my hon. Friend agree that for £3.1 million we can get full coverage across England, Wales and Northern Ireland, and ensure that all babies are tested, so that those with SMA can be treated as early as possible?

I agree with my hon. Friend, though I think the issue is not mainly financial; I will come on to that in a minute.

As other Members have said, the key point is that treatments are dramatically more effective the earlier they are given: before symptoms appear and before irreversible damage is done. Once motor neurones are lost they do not come back.

I congratulate the hon. Member on his speech. I join him in paying tribute to Jesy Nelson and her campaigning. I also pay tribute to the parents of little Charlie in my constituency. In the words of his mother, he was “very lucky to celebrate his first birthday last August.”

He was treated with gene therapy after being diagnosed and following symptoms. He is now living his life, but in a wheelchair. Had he been screened at birth he might have had treatment sooner and he might be walking right now.

The hon. Lady is entirely right and I have heard a number of those heart wrenching stories; she does well to speak so movingly on behalf of her constituent. That is a testament to the key intervention of getting a diagnosis as soon after birth as possible. Today, a baby with type 1 SMA is typically not diagnosed until around six months of age. By then, for many the window when treatment would have had the most impact has closed.

There is an alternative; screening at birth through the existing NHS heel prick test, which is routinely done on day five of a baby’s life. That already screens for 10 different serious conditions.

Thank you, Mr Mundell, for your chairmanship. I, too, pay tribute to the determination of Jesy Nelson and all the parents and young people who have been campaigning for this. I was alarmed to discover from parents this weekend that Portsmouth will not be included in the roll out of the SMA screening this October. That means that babies born in my city will miss that early diagnosis and will face potentially devastating conditions that early treatment might well have saved them from. My hon. Friend the Member for Portsmouth South (Stephen Morgan) and I have written to our integrated care board to find out why Portsmouth is not included and whether it will change its mind.

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?”

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?

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.

I congratulate my hon. Friend on introducing this debate and welcome your chairmanship of it, Mr Mundell. My hon. Friend referred earlier to 90% of children who are untreated potentially dying before their second birthday. That is a sobering statistic, but it is not a statistic; it is the reality of the lives of children, families and parents. Does my hon. Friend agree that we need to go faster sooner to roll out a comprehensive programme, as so many other countries have managed to do?

My hon. Friend is absolutely right. This is a matter of pace and of asking, “When?” not “If?” or “How?” because both those questions have already been answered.

I turn to the Government’s response. The previous Secretary of State for Health, my right hon. Friend the Member for Ilford North (Wes Streeting), met Jesy Nelson, the petitioner, in January. The Government accepted the case for an in service evaluation and brought the date for that live NHS trial forward from January 2027 to October this year, when screening will begin to be rolled out. I, the petitioners and others welcome that, though there is a sadness that it has taken so long to get to that point.

We must, however, be honest about where that decision leaves us. As my hon. Friend the Member for Bootle (Peter Dowd) alludes to, the real argument now is about pace and fairness. The evaluation is funded. It will run at seven of England’s 13 screening laboratories, covering around 72% of births. The remaining six sites, which include the site that covers the constituents of my hon. Friend the Member for Portsmouth North (Amanda Martin), and which account for the remaining 28% of babies born in the UK every year, are not at present in the plan. That does not seem to be an accident but the design.

Put in human terms, of the 48 babies born with SMA in England each year around 35 would be diagnosed by the introduction of SMA screening in this evaluation but 13 would not: there would be 13 babies a year born with the same condition but on the wrong side of an arbitrary line that they did not choose who will go undiagnosed until damage is done. A baby born in one postcode will be screened, treated early and may walk, but a baby born in another postcode in the same week will not, and by the time anyone knows it may be too late. That is the postcode lottery that Jesy told me about, and which deeply concerns her, in its starkest form.

It is not about a difference in waiting times but about whether a child walks, breathes unaided or feeds normally for life. That is why Professor Muntoni’s assessment needs to be heard. He asked me specifically to put this on the record: he described a trial that deliberately leaves some babies unscreened to serve as a comparison group as—his word—“unethical”. We are withholding from some children a diagnosis that we are fully capable of making and that we know will help to shape their lives in order to gather data on something that Professor Muntoni considers already internationally proven. That is the view of not just one eminent clinician, I am told, but the wider SMA clinical community.

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I will make a little progress and finish my point; I can see the time getting away and I want to make sure that other Members can speak.

The question is why, when so much of the world has acted, the United Kingdom is moving so slowly. That caution sits oddly with the Government’s welcome ambition elsewhere. The generation study is sequencing the whole genome of 100,000 newborns for more than 200 rare conditions, and the Government have committed to offering whole genome sequencing to every newborn within a decade, which is a welcome part of their 10-year health plan. That is a world leading vision, and I welcome it, but there is some irony in promising to read every baby’s entire genome within 10 years while not rolling out today across the whole of England one well established, internationally proven test for a single treatable condition.

Screening decisions must, of course, be taken with care. A national programme that affects 650,000 babies a year must be safe, accurate and deliverable across many laboratories. I recognise that the therapies are relatively new and therefore their lifespan impacts require ongoing evaluation. There are legitimate grounds for further research, but the evidence that we have now on its impact should sharpen our urgency, not dull it. I am told that the research the screening committee commissioned estimates that each year, screening could prevent around two babies needing permanent ventilation, prevent around three early deaths and allow around 37 babies to live relatively normal lives.

The economics are striking, too: the typical direct costs of caring for a child severely disabled by SMA—not the drugs costs, but the care costs—are around £450,000 per year. Most of that would be avoidable through diagnosis and treatment at birth. Here, the compassionate course and the fiscally responsible course point the same way.

I gently raise the point—the hon. Member for Strangford (Jim Shannon) has already made it—that there is a geographical discrepancy across the United Kingdom on this matter. Let us welcome the fact that, in Scotland, screening is now being rolled out for every newborn, though that is not the case, and there are no plans that I am aware of, in Northern Ireland or Wales.

I began my speech with two little girls—Jesy’s girls—and I return to them now. The delays to their diagnosis were not inevitable. Had the UK adopted screening on a timetable comparable to that of other countries, Jesy’s twins might have been diagnosed before symptoms appeared. We cannot change that, but we can stop it being true for the next family.

SMA is only the first of many rare genetic conditions where an early, treatable diagnosis will likely become possible in the coming years. If we cannot move at a reasonable pace on screening for SMA, which is proven, costed and adopted across the world, what does that say for the children with other rare genetic diseases, the screening tests for which will be developed in the coming years?

I put the following questions to the Minister, and I hope—and I know the petitioner hopes—for answers that are as specific as she is able to give. First, will the Minister push for conclusions to be drawn more quickly from the in service evaluation than the 18 months that are currently planned? Every month of delay in roll out to the 28% of the population not covered by the evaluation will likely delay the diagnosis of one baby, with serious consequences.

Secondly, what does the Minister say to the families of the 13 babies a year who, on the current plans, will be born outside the evaluation’s reach? Are there any interim safeguards against a delayed or missed diagnosis? Thirdly, will the Minister respond directly to the concern shared across the SMA clinical community that knowingly leaving some babies unscreened when the test and treatments already exist raises serious ethical concerns?

Finally, will the Government commit to ensuring that every baby in England is screened for SMA as quickly as possible? Will they continue to roll that out to all remaining screening centres, even if that is on a provisional basis while we wait for the in service evaluation? By what date can that be achieved?

I conclude with a reflection that, as it stands, the science on this disease has changed faster than our health system has. The condition was, within living memory, untreatable, but now a test at birth can make the difference between a wheelchair and a childhood spent running around. The petitioners are not asking us to abandon evidence or caution; they are asking us to act with the urgency that international evidence now permits, and to make sure that no baby is left behind simply because of where they are born. I look forward to contributions from other Members and to the Minister’s response.

Order. I do not intend to apply a time limit to contributions. Members will note that the clocks in Westminster Hall are not functioning. If someone speaks for longer than might be reasonable, I will call them to order. I call Ed Argar, who I am sure will not do that.

Thank you very much, Mr Mundell. It is a pleasure to serve under your chairmanship. I will seek to speak relatively briefly.

The hon. Member for Sunderland Central (Lewis Atkinson) set out the case behind this petition eloquently, reasonably and with passion. Every year in the UK, 48 babies are born with SMA, with 60% of those having the most severe form: SMA type 1. I was moved to speak in this debate not only as a former Health Minister, but particularly after hearing from my constituent Charlotte. She told me about her son Harvey, who sadly passed away at just shy of seven months old. She very movingly set out her experience to me, and has kindly allowed me to share it with the Chamber today.

I pay tribute to Charlotte and her family for their courage and willingness to share something so personal not just with me as their Member of Parliament, but with hon. Members and more widely. I hope hon. Members will bear with me; I want to quote Charlotte fully, because what she relates is extremely important: “On 15th March 2017 I gave birth to my first child. A beautiful blonde haired, blue eyed boy—Harvey. He was perfect. He was also unbeknown to us born with SMA Type 1.

As first time parents, having navigated the difficult journey of IVF, we were like rabbits in the headlights and had no idea anything was wrong—but in hindsight the signs were there quite early on. It was only through the concern of a Health Visitor when Harvey was 10 weeks old did the journey to his diagnosis begin. She had sadly come across another baby with SMA 1 earlier in her 30-year career and recognised the signs.

What Harvey went through to be diagnosed via multiple tests and what we went through as his parents was traumatic. Three weeks later we were then told by a room full of medical professionals that he had SMA Type 1 and at the very best he would live to two years old.

I will never forget that meeting, or the box of tissues that were slipped through the door just in case we needed one. I will never forget the walk out of Leicester Royal Infirmary that day, the day our ‘happy bubble’ burst & our lives changed forever. Nor will I ever forget the subsequent times when we had to go back to LRI when Harvey had stopped breathing and I resuscitated him, or to be trained in how to feed him via a nasal feeding tube.

In 2017, treatments were still at trial stage. We as Harvey’s parents decided not to treat Harvey with drugs that hadn’t been approved by NICE, nor did we want to put him through anymore trauma. An unimaginable decision to make, but we decided to focus on him and his needs as they changed whilst making memories together.

Harvey died on 14th October 2017, he was a day shy of being 7 months old.”

Charlotte told me that she and others in her situation were told that change was coming—that there would be an advancement in treatment, and that gene therapy and better diagnosis were on the way. As the hon. Member for Sunderland Central set out, those treatments do exist. There are three effective treatments for SMA in the UK, but as with so many health conditions, and as I saw during my tenure as a Health Minister, all too often, speed of diagnosis is everything.

The disease needs to be caught early, hence the benefits of newborn screening. I pay tribute to the former Health Secretary for bringing forward the ISE to October of this year, and I am grateful to him for that, but as the hon. Member for Sunderland Central set out, only 72% of babies in England will be included, so a large proportion—160,000—will not be screened. The hon. Member for Strangford (Jim Shannon), who has now left, highlighted the divergence in access across different parts of the United Kingdom of Great Britain and Northern Ireland, as did the hon. Member for Sunderland Central.

Until and unless the National Screening Committee makes recommendations on routine screening, many of those babies will miss out. I have seen how systems within the NHS work, often for good reasons—safety and rigour—but sadly that suggests that routine screening will not happen until 2030 or 2031. That is an awfully long time to wait and an awful lot of newborns who will be left unscreened and therefore potentially vulnerable to SMA.

In conclusion, and in paying tribute to Charlotte and her family, I have a question for the Minister, whom I know and have stood opposite on many occasions, both in government and now in opposition. I know that she cares, takes her brief extremely seriously and is a very diligent and caring Minister. My question to her, in Charlotte and Harvey’s name, is very simple: what steps can the Government take to speed up the process to add SMA to the NHS newborn heel prick test for all newborns in this country?

It is a pleasure to serve under your chairship, Mr Mundell. I thank my hon. Friend the Member for Sunderland Central (Lewis Atkinson) for his impressive eloquence. Watching this debate today is my fantastic communications officer, who has spinal muscular atrophy and whose insight on this issue has been incredibly valuable. SMA is a life threatening genetic condition where timing is everything. Without early diagnosis and treatment, irreversible damage occurs within the first months of a baby’s life. Left untreated, around 90% of babies born with severe SMA will die before their second birthday or require permanent ventilation just to survive.

However, when SMA is caught through newborn screening before symptoms even appear, that trajectory can change completely. Early treatment can halt the disease in its tracks and provide children with opportunities they would not have otherwise had. That is why I welcome the news of the screening that will begin in parts of England this October.

Under the current plan, however, screening will reach only two thirds of England, which leaves some newborns in England excluded. Many of my constituents in North Somerset rely on Bristol hospitals, such as Southmead, where my two children were born, which are not among those rolling out screening. Babies born there will belong to the 28% or so missing out.

This really is a postcode lottery, plain and simple. A baby’s chance of early diagnosis should not depend on their parents’ address. As we heard, Scotland has now launched a full national programme, and I believe that the Republic of Ireland has done the same. We are falling behind our neighbours while our children’s futures are decided by geography.

I spent nearly 20 years working as a pharmacist. In that time, I developed a particular instinct: if a disease can be treated, you treat it, and if a harm can be prevented, you prevent it. That instinct does not leave you. I agree that the current trial raises serious ethical concerns. When I consider this issue, the question I keep returning to is straightforward: where is it possible to prevent irreversible disability, why would we not act for every child without delay? Every baby, wherever they are born in the UK, deserves the same chance at a healthy life.

It a pleasure to serve under your chairmanship, Mr Mundell. I welcome the fact that we are having this debate. I do not know what to say, other than that if I was one of those amazing parents and advocates in the Public Gallery, I would be absolutely seething with rage, not because of the beautiful, cherished, much loved and incredible children who have been born, but because we have determined that it will take a significant number of years to get in place something that already works, as evidence shows, and, more importantly, saves a child.

I want to talk about something a little wider than spinal muscular atrophy, because this could be any condition. I have written to the Minister about any number of childhood conditions, and the common factor—it is the same with SMA—is that we deem them not important enough. That is the message to the families behind me today—those incredible people who advocate so strongly, even when their hearts are breaking. We should not expect them to go through this. Whether it is SMA or childhood cancers, the theme is the same.

Back in January of this year, as a result of the incredible advocacy and work that Jesy did on behalf of her two beautiful children, Ocean and Story Monroe, I tabled an early day motion that carried the support of 34 Members from across the House, which was really significant. The one thing that people wanted to say whenever they reached out to me—not just in Lagan Valley or Northern Ireland, but across the UK—was, “Enough is enough. We need to be heard. Our voices matter and our stories matter.”

I want to share some remarks from an incredible young woman I know from Northern Ireland. She is not my constituent, but if I did not say this, there is no way that she would forgive me. The incredible Michaela Hollywood is from Northern Ireland. She is not that young—I will not say her age, because she will shout at me—but she is living an incredible life. She says: “Honestly, I won’t take a break until every family gets what they need. It’s a strange feeling this week: I’m glad we have the exposure we need to save babies but I also want the world to know life is just as rich and full if you can’t walk”.

Those powerful words from a long term disability advocate and campaigner are at the heart of this as well.

The hon. Member for Sunderland Central (Lewis Atkinson) spoke about the emotional and psychological cost to families, and also about the long term physical and other impacts. We work all the time on improving PEG feeding for families, and families feel that they have to bash down a door just to feed their children, but here we have an option sitting in front of us that is proven to work. It will save lives and, whether it will be 2030 or 2031, we do not need to waste extra time having a debate about whether it is worth doing. We agree that it is worth doing and that it saves lives; we just need to get on urgently and do it.

It is a pleasure to serve with you in the Chair, Mr Mundell. I thank my hon. Friend the Member for Sunderland Central (Lewis Atkinson) for opening this vital debate on behalf of the nearly 150,000 people who signed the e petition. I am glad that, with the help and promotion of Jesy Nelson, who brought the petition forward, we are able to highlight the need for preventive action to protect children from the impact of SMA.

In my work with the all party parliamentary group on genetic, rare and undiagnosed conditions, I closely supported the campaign for newborn screening for spinal muscular atrophy for many years. I praise the work of SMA UK and Muscular Dystrophy UK, which led the “Every Moment Matters” campaign along with Genetic Alliance UK to press for newborn screening for SMA. It is absolutely fabulous that Jesy Nelson has been able to put focus on the issue and to press the former Health Secretary, my right hon. Friend the Member for Ilford North (Wes Streeting), to take real action, although it is very sad that she had to learn about the devastating impact of SMA from her own heartbreaking experience.

With SMA, time is muscle. The condition causes rapid and irreversible neurodegeneration. By six months of age, an untreated baby with SMA type 1 will lose 95% of their lower motor neurons. Transformational treatments are available on the NHS, but we are diagnosing babies too late for them to receive the maximum benefit. I have seen the life changing difference that early diagnosis made for a family in my constituency.

I want to talk about two brothers, Freddie and Louis. Freddie is a happy, social and determined young man who has hugely benefited from access to the lifelong treatment nusinersen. His family say that it saved his life and independence, but they still face challenges and costs in securing equipment to allow Freddie to have the freedom he needs and deserves, including by fundraising with the community for an all terrain wheelchair that allows him to take part in as many activities as possible with his peers. Because Freddie was diagnosed with SMA, his younger brother, Louis, was screened for SMA and diagnosed before birth. As a result, Louis became the youngest pre symptomatic baby in the UK with SMA type 2 to receive Zolgensma, a groundbreaking new gene therapy, at just 18 days old. Since getting that treatment, Louis has done well and is able to live his life free from the disease. That completely transformational treatment was available only to siblings, creating, as we have heard, an unacceptable health inequality where the wider population is denied the same chance of a healthy life.

I was recently contacted by a constituent whose daughter was diagnosed with SMA type 1 at five months old and, in her own words, five months too late. Her child is now two and needs a wheelchair. She cannot sit or stand unaided. She depends on specialist equipment and multiple weekly visits and appointments. That is no way for a toddler to live. Does the hon. Member agree that families like my constituents urgently need the Government to fast track the roll out of a testing programme to all children in all areas to ensure the best possible outcomes for children affected by the condition?

I certainly do agree. The test should be made available to everyone to prevent people from living with the effects of SMA that could have been diagnosed and treated.

As I was saying, it is important that we now have testing, but we must expand it to the whole of the UK very quickly.

Does my hon. Friend agree that we need to ask the Government why babies born in Portsmouth matter less than babies born in other parts of the country? If we are one of the six areas that will not have testing or screening, the babies born in my city have less chance and are therefore less valued.

I certainly agree with my hon. Friend’s point, which was also made by my hon. Friend the Member for Sunderland Central. All babies should have access to treatment. We know the clinical consensus is absolute.

In February 2025, leading clinicians published a letter in The Lancet contrasting the UK with countries that have screening programmes. In Belgium, babies born with SMA are ambulant. In the UK, babies with the exact same condition are still dying or remaining permanently reliant on ventilatory support and tube feeding. On the wider issue of newborn screening, a range of conditions could be the subject of testing, but we are behind the world on testing. Genetic Alliance UK and the APPG on rare, genetic and undiagnosed conditions are asking for a clear timeline for a systematic review of the NHS newborn screening programme from each of the four Governments across the UK to ensure that we do not miss the opportunity to give more children a better and a healthier life.

Returning to the issue of SMA screening, the UK National Screening Committee’s updated model from August 2025 confirms that introducing screening would prevent three early deaths and stop two babies from requiring permanent ventilation every single year. Crucially, it would also prevent about 30 babies from being confined to sitting and enable 37 babies annually to live largely normal lives.

There is a rigorous financial case for acting now. Treating SMA pre symptomatically reduces the need for lifelong mechanical ventilation and round the clock care. Introducing newborn screening would result in lifetime savings to the public purse of over £62 million and 529 quality adjusted life years for each annual cohort of newborns diagnosed.

I was relieved by the Government’s announcement last month that the in service evaluation for SMA screening will finally begin in England this October. However, the Government confirmed on 16 June that the evaluation will cover only part of the country. Specifically, it will launch in only the seven newborn screening laboratories that already have the required equipment. There must be a way of getting around that problem so that all our babies can be tested and receive appropriate treatment if necessary. The Scottish Government began a national screening pilot for all newborns earlier this year, and Ireland announced the introduction of its own screening programme in April.

We cannot accept a health system in which a baby’s chance of typical neuromuscular development depends entirely on the hospital in which they happen to be born. Will the Minister confirm whether the evaluation will be extended immediately to cover all of England, as well as Wales and Northern Ireland, for the sake of those children? We have the treatment, economic case and diagnostic tools; we must stop denying babies the chance of a healthier future.

It is a pleasure to serve under your chairmanship, Mr Mundell. I thank the hon. Member for Sunderland Central (Lewis Atkinson) for opening this important debate on behalf of the Petitions Committee, of which I am proud to be a member.

I am grateful to everyone who signed this petition and I pay tribute to the lead petitioner, Jesy Nelson. She has used her personal experience and public platform to raise awareness of spinal muscular atrophy. We know that it is a rare neuromuscular genetic condition that causes muscle weakness, movement problems, and difficulties with breathing and swallowing, as well as tremors, and bone and joint problems. Although those symptoms are most often noticed in babies and toddlers, they can also start in teenagers and adults. This extremely cruel disease has touched many people across the country and beyond. That is evident, given the simple fact that the petition has nearly 150,000 signatures, including that of my constituent Nasser Iqbal.

Nasser’s daughter was diagnosed with SMA type 1, the most severe form, three months after birth. She is unable to walk or eat due to nerve damage caused by her condition being left undiagnosed and therefore untreated in the first few months of her life. We know that every year in the UK, 48 babies are born with spinal muscular atrophy, with 60% having SMA type 1.

Once symptoms begin, damage to motor neurones cannot be undone. However, there is clear evidence that babies diagnosed before symptoms appear have significantly better health outcomes, with many able to reach developmental milestones that would otherwise not be possible. Earlier intervention would have made a huge difference to Nasser’s daughter. I am proud to speak in this debate on her behalf, because she and many other young people are impacted by the absence of early screening. That is why the petition calls on the Government “to fund and help fast track the process to add SMA to the NHS newborn heel prick test”

so that every baby is “screened at birth to allow early diagnosis and access to life changing treatment.”

Although screening for SMA in newborn babies is currently not recommended by the UK National Screening Committee, it has confirmed that an in service evaluation of newborn screening for SMA will start in October 2026. However, the plans will include only seven of the 13 regions, which, as many Members have said, leaves approximately 163,000 babies without screening until as late as 2030 or 2031.

I am disappointed that one of the areas not included in the ISE of newborn screening for SMA is West Yorkshire, and I am extremely concerned that it will leave my constituents across Keighley and Ilkley without access to this potentially lifesaving screening, despite the ever growing need for it. Yorkshire has 1.5 times as many patients with SMA compared with national figures; in the last three years alone, the regional neuromuscular service in Leeds has diagnosed 10 infants with the most severe form of SMA. Two tragically died within their first year of life and two have survived, but are living with significant and lifelong disability. Neither child can stand or walk independently. They require night time respiratory support and are unable to feed themselves without assistance. In comparison, the children diagnosed and treated pre symptomatically have achieved their expected motor milestones, and they are sitting and walking as expected for their age.

I pay tribute to the Leeds teaching hospital for reaching out to me before this debate. In particular, I thank Dr Anne Marie Childs and her team of paediatric neurologists, who asked me to tell the Minister that we cannot be in a scenario where not every new born baby in the UK has access to early diagnosis and life changing treatment. I therefore call on the Minister to make sure that West Yorkshire and my constituents across Keighley and Ilkley are included as part of the early screening process.

The hon. Gentleman and the hon. Member for Sunderland Central (Lewis Atkinson) have eloquently and powerfully laid out the ethics of leaving out some children from screening, as well as the deep unfairness those children face in not being screened. Is there not also a question of evidence? When we are talking about a rare disease, the numbers are so low that it makes sense to include the whole of England in what is essentially a clinical trial being run by the NHS. If we need a control arm to compare data against, there will be historical data for the children who were not screened and treated too late. I am genuinely perplexed why the Government have not included every testing centre or every laboratory in this trial in the in service evaluation. Does the hon. Gentleman agree?

I absolutely agree with the hon. Member. The reality is that, when dealing with such rare diseases, we are better casting the net far and wide to get as much data as possible. That was one of the points made to me by the Leeds teaching hospital. Dr Anne Marie Childs is advocating for West Yorkshire to be included as part of the early screening process because, at the moment, it is a postcode lottery. Whether someone has access to early screening depends on wherever they happen to be born. The data collection would feed into national reassurance that the Government should be focusing on this issue. It pains me to say that right now a child born in my constituency of Keighley and Ilkley in West Yorkshire does not have access to early screening.

SMA is a debilitating condition and, although it cannot be prevented, the outcomes are significantly better for babies who are diagnosed early. Looking at the progress made in Scotland, which began screening new born babies for SMA in March based on in service evaluations, I urge the Government to ensure that no child is left behind and that we roll out screening for every child, no matter where in this country they are born.

It is a pleasure to serve under your chairship, Mr Mundell. I thank my hon. Friend the Member for Sunderland Central (Lewis Atkinson) for leading this important debate on behalf of the Petitions Committee, and I thank the 306 residents of Newport West and Islwyn who signed the petition. I am delighted to have spoken with the chief executive of SMA UK, Giles Lomax, a number of times, and I pay tribute to his tireless advocacy. I also thank Jesy Nelson for her work raising awareness of SMA following the diagnosis of her twin daughters.

SMA is a serious but rare genetic decision that causes progressive muscle weakness and deterioration, as we have heard. I should declare that, in my previous life, as a paediatric physiotherapist, I treated a number of children and babies with SMA, so I know a bit about the struggles that families go through in coming to terms with the diagnosis, the treatment, the child’s ongoing needs and the aids and adaptation that are required throughout their life.

Currently there is no cure but, thanks to transformative research, treatment can slow symptoms and even stop progression. As a result, early detection and treatment of SMA due to newborn screening can dramatically improve the wellbeing of patients. That includes the significant benefits that have already been highlighted to respiratory health, motor function and, critically, life expectancy.

To be totally hard hearted about it, catching SMA early via screening saves not only lives, but taxpayers’ money. Without presymptomatic treatment, The Lancet estimates the annual health cost for a single child at about £75,000—not including the wider mental health issues, equipment, carer costs, housing adaptations or disability benefits. Those costs can run into hundreds of thousands of pounds per family. It is therefore not only morally right to roll out the screening to all children straight away; it is also financially prudent.

I am pleased that the Scottish Government have recognised the public case for newborn screening, becoming the first nation in the UK to add SMA to their universal screening programme. If they can do it, why can the rest of us not? It is really important. I am pushing for all constituent nations of the UK to learn from that example and urgently explore how we roll out universal screening for SMA. We cannot risk the postcode lottery mentioned in this debate. Children with SMA should not have their life chances determined by which part of the UK they live in.

I welcome the progress made in England to extend access to newborn screening, although we know it does not go far enough. Around 72% of babies born in England will be screened, but we obviously must go further. The previous Health Secretary, my right hon. Friend the Member for Ilford North (Wes Streeting), committed to expanding the ISE to ensure that more children could be screened, so I would be grateful if the Minister could update us on the progress on delivering that.

While significant progress has been made in England, Wales still has no plans for a screening roll out, despite being uniquely well positioned to participate in the ISE. Screening facilities at the Cardiff and Vale University health board are currently being upgraded and have the capacity to facilitate newborn blood spot screening for every child born in Wales. A single, one off and modest investment of around £1.5 million could therefore deliver 100% coverage and certainty for the parents of the 27,000 children born in Wales every year.

Given that unique opportunity, the decision thus far by the Welsh Government not to participate in the ISE is extremely frustrating. I wrote multiple times to the previous Welsh Cabinet Secretary for Health and Care, urging him to reconsider that short sighted decision. Although the NHS in Wales faces many challenges and competing demands for future investment, I will continue to press the new Welsh Government to participate in the ISE. Waiting until the ISE concludes risks no babies being screened until the National Screening Committee makes its formal recommendations in 2030—four years more of missed opportunities for Welsh babies.

Given the clear benefits of cross border working across our Union, could the Minister outline what conversations she and her colleagues have had with their Welsh Government counterparts about the ISE and how Wales could participate in it? If she cannot answer tonight, I would be grateful if she would write to me.

To conclude, although the effects of SMA can be dramatic, screening and early treatment offer us the opportunity to transform these children’s lives. We need to ensure that all babies across every nation of the UK receive blood spot screening for SMA, so that no child’s future is determined by their postcode.

Our final Back Bench contribution will be from Chris Vince.

It is a pleasure to serve under your chairship, Mr Mundell. I thank my hon. Friend the Member for Sunderland Central (Lewis Atkinson) for opening and framing the debate. I also thank the right hon. Member for Melton and Syston (Edward Argar) for sharing Harvey’s story with us. It was really powerful, and I hope that Harvey’s memory will live on for us through this debate.

One of the reasons I want to speak in this debate is that I am a new father, who celebrated his first Father’s Day yesterday, and I know how important it is for all new parents to know that their baby is healthy. I am very proud that so many of my constituents in Harlow, which borders Broxbourne, feel so passionately about this issue and signed the petition. Spinal Muscular Atrophy UK and Muscular Dystrophy UK have asked for SMA to be included in the newborn screening programme, and I thank those charities for their work. As Members will know, this issue came to the fore at the beginning of this year when Jesy Nelson’s twin daughters were diagnosed with SMA, and I thank the then Health Secretary for meeting her. The petition was launched subsequently and led to this debate.

I recognise that the Government have started to roll out an in service evaluation in NHS screening services in response to this petition, but I add my voice to those of the campaigners, the Members who have spoken in this debate and the many Harlow residents who signed the petition to urge the Government to go further and faster. The quoted 18 months for evaluation is just too long, and so many babies will not be diagnosed because of it.

As my hon. Friend the Member for Sunderland Central said, the sooner this treatment is administered, the less these young people will be impacted. I also welcome his comments about screening not becoming a postcode lottery. Both those points are really important. I hope the Minister heard the passionate words of Members from across the House, in particular those of my hon. Friend the Member for Portsmouth North (Amanda Martin), who is obviously hugely passionate that her constituents are not left out—I would feel the same if it was my constituency.

Having worked with children, particularly young people with lifelong disabilities and their parents, for pretty much all my life before I came to this place, I know that the trauma they face never really goes away. The more we can do to support them and their children, the better.

It is a pleasure to serve under your chairmanship, Mr Mundell. I thank the hon. Member for Sunderland Central (Lewis Atkinson) for opening this debate so well. I am grateful to the petitioners for securing this debate, including the 287 constituents in my own patch, and to the many families, clinicians, charities and campaigners who have worked so hard to raise awareness of spinal muscular atrophy and the importance of newborn screening. I would like to say a big thank you to them, and I truly mean that.

This issue goes to the heart of what our health service should be about: identifying serious conditions as early as possible, ensuring equal access to life changing treatment and giving every child the best possible start in life. Spinal muscular atrophy, or SMA, is a devastating genetic condition, as the right hon. Member for Melton and Syston (Edward Argar) so eloquently set out when he shared that letter. It causes progressive muscular weakness and can have a profound impact on almost every aspect of a person’s life. Many people with SMA face significant mobility challenges, difficulties with breathing, and bone and joint complications such as scoliosis.

An SMA diagnosis can be life changing for whole families. It brings uncertainty, anxiety, and in many cases, the prospect of intensive and lifelong care needs. Historically, SMA was one of the leading genetic causes of infant mortality. Before effective treatments became available, up to 90% of babies with the most severe forms of the condition would die or require permanent ventilation before the age of two. That stark statistic reminds us just how serious this condition can be.

Thankfully, the picture today is different. Thanks to years of scientific research, medical innovation, and the determination of patients, families and campaigners, we now have treatments that can dramatically alter outcomes for children diagnosed with SMA. These advances represent one of the great success stories of modern medicine, but there is one crucial factor that determines how successful those treatments can be: timing. The earlier SMA is diagnosed, the better the outcomes. In many cases, treatment before symptoms develop can prevent irreversible damage to motor neurones and dramatically improve children’s future quality of life. Earlier diagnosis can mean the difference between a child learning to walk independently or their never achieving that milestone. That is why newborn screening matters, as all hon. Members who have taken part in today’s debate have made so clear.

The debate is about ensuring that children can benefit from treatments at the point when those treatments are most effective; it is about giving families the opportunity that comes with early intervention; and it is about ensuring that where a child is born does not determine whether they have access to life changing care. That is why there is understandable concern about the current rollout of the in service evaluation for SMA screening. The principle behind the evaluation is sensible, and gathering evidence and ensuring that the NHS is prepared for wider implementation are important objectives. However, the rollout to date has been inconsistent and incomplete. Some parts of the country have been included, while others, as we have heard, have not.

Families living in areas such as Oxfordshire currently have no access at all to the programme. My hon. Friend the Member for Henley and Thame (Freddie van Mierlo) has campaigned tirelessly on behalf of his constituents affected by this issue. In response to a parliamentary question that he submitted, it was confirmed that the current in service evaluation will offer screening to about 400,000 babies. By comparison, a national screening programme would cover approximately 650,000 babies every year. In other words, under the current arrangements about one third of babies born each year will not be covered by the evaluation.

That inevitably brings up questions, and not just those asked by my hon. Friend the Member for Twickenham (Munira Wilson), who rightly said that services for rare conditions should cast the widest net possible. Why should access screening depend on geography? Why should one family benefit from early detection, while another family living elsewhere does not? If the evidence increasingly points to the importance of early diagnosis, how can we possibly justify such uneven access? Too often in our NHS, patients and families face postcode lotteries. Whether it is on access to dentists, GPs, mental health services or specialist treatment, geography can end up determining outcomes.

The Government and NHS England have acknowledged concerns about the rollout. We welcome indications that NHS England is considering whether implementation can move faster, and whether the evaluation could potentially be extended more widely. That is encouraging, but families and clinicians need greater certainty. At present, there is a lack of clarity about how long the evaluation will run, when additional sites may be added, and when a final decision on a national screening programme can be expected. Those are issues that it is reasonable to ask questions about, and people deserve answers to such questions.

The Minister might point to the need for robust evidence before national implementation. Of course evidence matters and of course changes to screening programmes must be safe, effective and carefully planned, but if the stated purpose of the in service evaluation is to gather evidence, surely there is a strong case for gathering that evidence from as broad and representative a population as possible. A wider rollout would not only improve equity of access; it would also strengthen the evidence base on which future decisions will be made.

A couple of my constituents with direct experience of SMA got in touch with me. The thing that they identified as being most difficult about the current arrangements with the in service evaluation is the lack of detail about how long it will take. Does the hon. Lady agree that if the Minister could provide a level of clarity about the length of time that the ISE will run, that might give us the sense that there is forward momentum on this issue?

The hon. Member makes the good point that often the uncertainty and the unknown length of time for which people are in limbo matter, and I hope that the Minister can address his question when she responds to the debate.

In conclusion, the story of SMA over recent years is ultimately one of hope. Medical science has transformed what was once considered an overwhelmingly bleak diagnosis. Children who previously would have had very limited prospects now have opportunities that simply did not exist a generation ago, but those opportunities depend on timely diagnosis. The treatments exist, the evidence is growing and the need is clear. The challenge now is to ensure that every child has the same chance to benefit from those advances, regardless of where they happen to be born. Families affected by SMA deserve urgency, clarity and, above all, a system that acts as quickly as science now allows. I look forward to hearing the Minister’s response.

It is a pleasure to serve under your chairmanship, Mr Mundell. I thank the hon. Member for Sunderland Central (Lewis Atkinson) for opening this important debate on behalf of the Petitions Committee. The debate is an example of Parliament at its very best.

I also acknowledge Jesy Nelson and her tireless efforts to raise awareness of spinal muscular atrophy following her twin daughters’ diagnosis with the condition. Little Mix have long used their platform to support a wide range of charitable causes, and I express my sincere thanks for their continuing to do so. However, to open up about something so deeply personal goes a step further. I also pay tribute to all the other families who have opened up to so many Members of Parliament.

I have often spoken about my time working in children’s hospices, and it was always the families’ stories that made compelling cases for the extra support that was needed. I acknowledge the work of Spinal Muscular Atrophy UK, whose dedication to supporting individuals and families affected by SMA continues to make a meaningful difference in countless lives. In this country we are lucky to have so many wonderful charities that help families through difficult times.

As we have heard, SMA is a progressive condition that causes muscle wasting and weakness. It is a most awful condition that is not reversible with treatment and, as we have heard, there are several types. SMA type 1, which my right hon. Friend the Member for Melton and Syston (Edward Argar) talked about Harvey having, is a severe form that develops between birth and six months of age. Without intervention, life expectancy is often less than two years. Type 2 develops between six and 18 months of age; children usually cannot walk unaided and may suffer respiratory complications into adolescence. Type 3 develops after 18 months of age; individuals can usually walk independently, although that may become progressively more difficult over time.

Before 2019, there were no effective drugs available on the NHS to treat the condition. However, over the last seven years, three transformative treatments that can stop SMA in its tracks have become available on the NHS: one is administered by a lumbar puncture every few months; the second is gene editing infusion; and the third is a treatment that patients must take orally for the whole of their lives. There is encouraging evidence that those treatments really are helping.

We have heard that SMA cannot be reversed, but NHS data from 2023 shows that children with SMA 1—the most severe form of the condition—are now surviving for longer. For families affected by an SMA diagnosis, time is everything, so that is an important start. When I worked in children’s hospices, I saw so many families go through incredibly difficult times. As the hon. Member for Portsmouth North (Amanda Martin) mentioned, it is not just about caring for a child; there is the impact on relationships, family finances and even sleep. I remember one father saying to me that if he got up eight times in the night, he considered that a good night’s sleep.

We had a saying in the children’s hospices: while we cannot add days to their lives, we can add life to their days. However, in this case we can literally add days to their lives, and we really should do so. I agree with my right hon. Friend the Member for Melton and Syston that the Minister is very diligent and clearly cares, but will she tell us how many babies and children are currently receiving the drugs I mentioned from the NHS? Will data continue to be collected to give us fresh insights into the effectiveness of those drugs over time? While the damage inflicted by SMA is irreversible, if treatment is given before symptoms begin, that damage can be prevented. Screening can therefore be an absolute lifeline for babies and families if SMA is caught early. That is why we welcome the UK National Screening Committee’s recommendation to introduce in service evaluation, which will see newborn screening for SMA trialled in the UK, and the role that the former Secretary of State, the right hon. Member for Ilford North (Wes Streeting), played in all that. It is a positive step forward.

I want to add my voice to those of other Members today, and put some questions and points of clarification to the Minister. The ISE, recommended by the National Screening Committee, will evaluate newborn screening for SMA for some newborns in England, commencing in October 2026. However, as we have heard, reports suggest that about one third of newborns will initially not be included. Will the Minister explain the logic behind the choices that have been made?

As I understand it, the seven NHS newborn screening laboratories in England that will undertake screening are in Birmingham, Great Ormond Street, Manchester, Newcastle, Sheffield, south east Thames and south west Thames. Government statistics do not suggest that babies born in those regions are more likely to have SMA, and there appears to be no correlation at all between instances of SMA and the location of the centres chosen to screen newborns for the condition. I could also find no correlation with the efficiency of delivery for the screening programme. That begs the question: what is the rationale for choosing just those centres, and why have others not been chosen?

A baby born today who is screened and treated straight away is likely to walk at three years old. One born in a non screened area, who is treated only when they become symptomatic, is very unlikely to walk and may not even be with us for very long. NHS England is responsible for organising the screening, but we know that the Government are going through with its abolition, along with the reorganisation of integrated care boards, so what assessment has the Minister made of the impact the restructuring may have on the capacity to deliver screening? That is an important point to bear in mind.

There are other conditions that are excluded from newborn screening, such as metachromatic leukodystrophy. I met a mother who has been campaigning hard on that, along with other campaigners. Will that condition and others also be included in newborn screening in the UK? Surely we should help if we can, because, as I say, the impact is really difficult for those children and their families. I am a huge fan of early intervention, so if we can do something about it early on we should—I cannot remember which hon. Member said this, but even if we just look at it through the hard lens of finances and public money, we would save a huge amount of money over the years.

It is desperately sad to see babies and their families affected by SMA. I hope that the Minister can provide some reassurance to those families that the forthcoming screening that they have long been fighting for will be fair, effective and accessible to all newborns in the UK. As I mentioned, the families I used to work with in children’s hospices would often say that, when their child was born or diagnosed with whatever condition it may be, their hopes and dreams for their child changed. When the baby was first born, they thought about the first day at nursery, primary school or secondary school, and then doing exams, going on to get married and have children and so on, and suddenly those dreams had to change because their life would be different. If we do this screening, some of those families, can keep their original dreams and we can add days to the lives of those children.

It is a pleasure to serve under your chairmanship, Mr Mundell. I thank my constituency neighbour, my hon. Friend the Member for Sunderland Central (Lewis Atkinson), for opening the debate on behalf of the Petitions Committee. It is very heartening to see so many Members in the Chamber and so many families in the Public Gallery, all united by a shared concern for children and families affected by spinal muscular atrophy.

SMA is a cruel and devastating condition. It can steal from a family the carefree future they had imagined for their child. It can take away a child’s mobility and, far too often, it can take away a child’s life far too soon. I pay tribute to children living with SMA for their courage, to their families for their strength, and to campaigners for working tirelessly to ensure that their voices are heard. Their message to us is clear: where there is a chance to identify affected babies earlier, and where treatment may have its greatest effect, we must pursue that chance with urgency, care and resolve.

I particularly thank Jesy Nelson, who is in the Public Gallery and is very welcome. She is so brave to share her experience of the condition, which affects her twins, Ocean and Story. She has given a public voice to all those going through a similar experience. This petition has rightly gained significant support—150,000 signatures —in such a short space of time. I am so pleased that we can take the time to have this debate and raise awareness of SMA.

I assure everyone that this conversation will not stop today. I will continue to listen to the voices of those speaking for children with SMA. Tomorrow, for example, I am due to meet with members of Muscular Dystrophy UK to continue this very conversation. I know that many families and advocates feel that the Government have moved too slowly towards a decision on screening for SMA. I understand that frustration, but decisions about national screening programmes must be made with great care.

We must be confident that screening will do more good than harm, that it can be delivered safely and fairly, and that we are making the best possible use of NHS resources for the babies and families who depend on them. There remain many unanswered questions about the benefits and practical delivery of screening for SMA. That matters because the answer we seek must be robust enough to support a lasting national programme.

We were pleased that the National Institute for Health and Care Excellence published final guidance earlier this year accepting both nusinersen and risdiplam as treatments that could be routinely offered to SMA patients for whom gene therapy has not worked. The finding that those treatments can improve survival rates and slow the progression of disease is welcome and significant. For families living with SMA, even slowing that progression can mean more time, more independence, more moments together and more hope.

The Minister says that screening must be safe and fair. We know the benefits of screening—the people in the Public Gallery have articulated it so clearly. The benefits are undeniable, so is it fair that the whole of Wales and a third of England does not have such screening?

I was going to come to the point about labs, but let me address it now. My hon. Friends the Members for Newport West and Islwyn (Ruth Jones) and for Portsmouth North (Amanda Martin); the hon. Member for Keighley and Ilkley (Robbie Moore); the shadow Secretary of State, the right hon. Member for Daventry (Stuart Andrew); and others have made that very point. The trials will be rolled out to seven of the 13 labs, which leaves six labs outside the trial. I am told that the reason is that, as it is such a rare condition, the trial has to be broad enough to ensure a robust evidence base. The six not included do not currently have the requisite equipment. If that changes, more labs could be included.

I thank the Minister, who I respect her massively, for her comments. Portsmouth hospital is part of the generation study, so it is already able to test for the condition and could have rolled out the evaluation had it been included in the trials. It seems very strange that we are able to test babies in the generation study but not across the board.

I thank my hon. Friend for that intervention. My hon. Friend the Member for Sunderland Central also mentioned the generation study. There are lots of questions around this, and, as I am sure my hon. Friend the Member for Portsmouth North is aware, in preparing for this debate, I have been asking lots of those questions. I will take that point away and get back to her.

As we have heard, spinal muscular atrophy affects every part of daily life for the children and families involved: their routines, milestones, plans and the hopes that families hold for their children. Any progress against it matters deeply. At the same time, NICE has been clear that important questions remain, including around longevity and how long the benefits of these relatively new treatments may last. Those questions, alongside important issues of feasibility, must be answered before a national screening decision can be made.

That is why my Department has worked with the National Institute for Health and Care Research and NHS England to establish an in service evaluation. That evaluation will run within the routine newborn blood spot screening programme to gather the evidence that we need, help answer difficult questions and fill the gaps that stand between us and a confident national decision. Crucially, the Department has worked alongside patient advocate groups, including the SMA NBS Alliance and SMA UK. I commend both groups for their excellent support and advocacy. They help to ensure that families’ voices are not an afterthought but are at the heart of decisions.

I acknowledge that, as we have heard, many have been frustrated by the pace of planning for this large scale scientific evaluation. I hear that frustration—I really do—but we must get this right, because only a strong evaluation will give us the answers that families deserve and the evidence that a national programme requires.

I appreciate what the Minister says about getting evaluation right, but Ukraine can install such an evaluation across the whole country during a war, and Ireland is doing it, too, so why aren’t we?

Again, I have heard my hon. Friend’s remarks. They are not falling on deaf ears, as I am sure she is aware.

The previous Secretary of State, my right hon. Friend the Member for Ilford North (Wes Streeting), met Jesy Nelson, along with Giles Lomax from SMA UK, and I know that that had a massive impact on him. They spoke at length about what is needed; he listened and we acted. That is why I was very happy to announce just last month that the planned start date of January 2027 would be brought forward by three months. The new start date for the in service evaluation will be October 2026. From that date, babies will begin to be screened for SMA, and we will begin collecting the essential information needed to help many more children in the years ahead.

I am pleased that that announcement was made, but, as I reiterated in my speech, that provision does not include West Yorkshire or my Keighley and Ilkley constituents. The Minister said that a broadbrush approach was needed to gain data, and that has been rolled out to the areas that the Government have already announced, but surely it is necessary to include all areas, as many Members said. Will the Minister meet me or write to me about what steps can be taken to include areas such as West Yorkshire, Leeds, and Keighley and Ilkley as part of the screening programme?

I have asked those very same questions. As it is such a broad trial, the small number that is not covered does lead me to ask those questions. I have not given up asking those questions, but for today, the answer is the same as the one I gave to my hon. Friend the Member for Newport West and Islwyn.

A group of SMA experts wrote an article in The Lancet in February 2025 entitled “The human toll of slow decisions”. They recommended that “expert opinion and international evidence should be more thoroughly integrated into the decision making process of NSCs”

and that “the decision of independent bodies such as the NSC should be subject to scrutiny by the Ministry of Health, given the substantial effect of failing in the duty of care.”

The evidence and experience are there, but we are lagging behind. I hope the Minister agrees that we must stop taking a conservative approach to this. Children’s and families’ lives are at risk, and it has to stop.

I thank my hon. Friend for his passionate intervention. I say again that it does not fall on deaf ears.

The right hon. Member for Melton and Syston (Edward Argar) asked what steps can be taken to speed up the process. We will be working at pace. Again, I will be paying very close personal attention to that.

Let me refer to a few other comments that I have not touched on yet. My hon. Friend the Member for Sunderland Central asked about the unscreened community being used as a control or comparison group. I want to be very clear that those not included in the trial are not being used as a control or comparison group. Labs taking part in the study start to screen newborns for SMA in phases, and the labs act as the control before they start to screen.

My hon. Friend the Member for Blaydon and Consett (Liz Twist) asked when coverage will reach the whole of England. Again, this is about the six labs that are not covered. The Secretary of State is actively considering that, which is why I said that we are listening and working at pace.

My hon. Friend the Member for Newport West and Isl—[Laughter.] She asked whether we had spoken to Wales. It is a good job they do not send me to speak to Wales, because I cannot pronounce all the names! We work in close collaboration with the devolved Governments, who were all included in discussions about setting up the ISE.

The shadow Secretary of State, the right hon. Member for Daventry, asked a number of detailed questions. I will endeavour to write to him on those points. We have chosen areas with labs with the equipment needed to do the analysis, which is why I will write to my hon. Friend the Member for Portsmouth North about the generation study.

We must move forward with compassion for families, rigour in the evidence and determination to give every child the best possible start in life, and that is what will do. I thank all hon. Members for their excellent speeches and for the challenge about the pace and coverage of the clinical trial. I hear them all and feel their pain deeply. The House should believe me when I say that I asked all those questions while preparing for the debate. I commit to them all that I will continue to ask those questions on their behalf. Where we can go further and faster safely, I will push for that to be the case. This debate has played a very important part in that push. I thank Jesy, all the petitioners and all hon. Members for ensuring that this debate took place today.

Mr Atkinson, you have one minute to wind up.

I thank the Minister for her remarks. As others have said, she is a diligent Minister, and I know that she will push this carefully with the Department. Would she consider meeting me, Jesy and SMA UK after she has had a chance to push some of those points? I thank all Members for their contributions today.

Most of all, I thank Jesy for bringing this petition to life, telling the story of her twin girls, being so clear and rightly challenging us about the fact that there should not be a postcode lottery in the UK. We should have screening provision as good as anywhere else in the world.

Motion lapsed, and sitting adjourned without Question put (Standing Order No. 10(14)).