Spinal Muscular Atrophy: Newborn Screening Test
House of Commons · Westminster Hall · 22 Jun 2026 · 50 speeches · Official Report
[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...
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...
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...
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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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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...
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’...
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...
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)).