Lewis Atkinson MP: speeches

Speeches

• 1 Jul 2026 · Engagements · Hansard source

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  Q9. Too many people are waiting too long for NHS mental health care, with over 6,000 adults waiting up to two years. In Sunderland, grassroots organisations like the wonderful Betsy Jenny café are providing support to our community, but they cannot substitute for timely, NHS-funded care. As the Government consult on their new mental health strategy, will the Prime Minister agree that it must include clear waiting time standards?

• 22 Jun 2026 · Spinal Muscular Atrophy: Newborn Screening Test · Hansard source

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  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.

• 22 Jun 2026 · Spinal Muscular Atrophy: Newborn Screening Test · Hansard source

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  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.

• 22 Jun 2026 · Spinal Muscular Atrophy: Newborn Screening Test · Hansard source

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  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?”

• 22 Jun 2026 · Spinal Muscular Atrophy: Newborn Screening Test · Hansard source

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  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.

• 22 Jun 2026 · Spinal Muscular Atrophy: Newborn Screening Test · Hansard source

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

• 22 Jun 2026 · Spinal Muscular Atrophy: Newborn Screening Test · Hansard source

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  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.

• 22 Jun 2026 · Spinal Muscular Atrophy: Newborn Screening Test · Hansard source

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  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.

• 22 Jun 2026 · Spinal Muscular Atrophy: Newborn Screening Test · Hansard source

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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.

• 22 Jun 2026 · Spinal Muscular Atrophy: Newborn Screening Test · Hansard source

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  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.

• 9 Jun 2026 · Waiting Lists: Unreported Removals · Hansard source

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  I commend the Minister for her work in reducing waiting lists for GP referral to first treatment, and they are genuinely coming down. She will be aware, however, that that statistic does not capture the entire picture, particularly for people who require subsequent follow-up care—for example, women with endometriosis or women waiting for breast reconstruction following mastectomies. Could she say a little about any plans she has to capture those waiting lists?

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  Like others, I sat with officials from the Department of Health and Social Care after Second Reading, so there absolutely was DHSC involvement, including in many of the amendments that Lord Falconer introduced. Going back to the principle of parliamentary democracy, I respect the point that my hon. Friend makes, but all the issues she has highlighted were aired before Third Reading. She says that we are not a debating Chamber but a decision Chamber, so why—

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  It is always a pleasure to receive an intervention from the hon. Gentleman; he is much more experienced in this place than I am. However, over 16 days of debate in the House of Lords, the will of the Lords was not tested once. There were no Divisions. If the will of the peers was so overwhelmingly against the Bill, the Lords could have divided on Second Reading if the House had wished; it chose not to. The opponents of the Bill in the Lords went out of their way, it is suggested, to avoid Divisions. Some amendments may have passed, but a great number of others would probably have been defeated. With more than 1,200 amendments tabled, and 1% of peers tabling 60% of them, that small number of peers took up more than a third of the total speaking time.

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  I have already given way to the hon. Member.

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  You want me to make progress, Sir Edward, so I will. The question then turns to what happens now. What does this mean for assisted dying, yes, but also for the British constitutional settlement? As part of my preparation for this debate, I spoke to Tom Brake, CEO of Unlock Democracy, which campaigns for constitutional reform, including of the House of Lords, to address the democratic deficit. He believes that the case for Lords reform has been significantly strengthened by the behaviour of peers in this episode. In contrast, the Hansard Society’s director, Dr Ruth Fox, to whom I also spoke in preparation for today, reminded me that the Lords is a self-regulating Chamber. It is not subject to the timetable or expectations of the Commons or anyone else and, she believes, nor should it be. But she is also clear that in the current circumstance the British constitutional settlement provides a clear and appropriate response that the Commons could use to assert its primacy—the Parliament Act 1911. That Act was explicitly designed to be applicable to private Members’ Bills. Indeed, when the Parliament Bill was debated back in the 1910s, an amendment to confine it to Government Bills was defeated. The Parliament Act has been used before on issues of conscience—for example, equalisation of the homosexual age of consent in 2000 or the Hunting Bill in 2004, when the Lords refused to accept the decision of the Commons. The petitioners believe that it is now necessary to use the Parliament Act for assisted dying legislation also. They point out that if the legislation is reintroduced and passed by the Commons a second time, the Lords will again have a chance to do its job properly—to consider the types of amendments that a number of hon. Members have suggested that they believe the Lords want to see. The Lords may pass amendments for Commons consideration, but under the Parliament Act it would be unable to block progress entirely. I believe that the Parliament Act gives us a way to answer the question whether parliamentary democracy is still fit to tackle the key issues of our time. I am grateful that my right hon. Friend the Leader of the House is here and I look forward to his assessment of the situation in response to this debate. I hope that he will specifically touch on the Government’s assessment of whether the Parliament Act would be applicable should the Bill be reintroduced and, crucially, whether the Government would make appropriate time available for necessary procedures to take place to allow its use.

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  I will just finish this point. As my hon. Friend the Member for Bexleyheath and Crayford (Daniel Francis) mentioned, Lord Falconer—the Bill’s sponsor in the Lords—made clear that he would sit down and discuss amendments with peers: indeed, he accepted and supported amendments that responded to genuine concerns with the Bill. But there was no opportunity for the Lords to reach a conclusion on amendments, because of the tactics involved. Mark D’Arcy, a BBC parliamentary correspondent for more than two decades, characterised the Lords’ treatment as this: “This is a filibuster. If it walks like a duck, quacks like a duck, and tastes good in orange sauce, it’s a duck. If they’re going this slowly over this piece of legislation, I’m afraid it’s a filibuster. There is no other way to describe what’s going on here. It may be in order. It may be within the rules of the House, but what’s happening here is that a relatively small number of peers are putting down lots and lots of amendments and debating them very, very slowly.”

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  I beg to move, That this House has considered e-petition 752673 relating to the timely progress of bills through Parliament. It is a pleasure to serve with you in the Chair, Sir Edward, and to open this important debate as a member of the Petitions Committee. I want to start by being clear about what this petition, and therefore this debate, is about. Although the petition was prompted by the parliamentary consideration of assisted dying, it is not about assisted dying; it is about British parliamentary democracy and how—or, indeed, whether—it can work. The petition poses what I would suggest is an existential question for us here: does our constitutional settlement allow changes that have been backed by the public and their representatives to pass into law? I desperately want the answer to that question to be yes. That is not because I want a specific piece of legislation to be passed; it is because if, as a country, we cannot resolve different views through Parliament—developing legislative proposals and scrutinising them, but ultimately reaching a decision on them—we are in a very troubling place.

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  Apologies—my right hon. Friend may not have spoken, but many other Members certainly made that argument, and it was a key argument for voting against the Bill on Third Reading. We either believe in parliamentary democracy and in the primacy of the House of Commons where each of us independently reaches our judgment—I accept that it is a judgment; I am not an absolutist on this issue—or we do not. We cannot believe in parliamentary democracy when it suits us and not believe in it when it does not suit us. Nevertheless, I agree with my right hon. Friend on the need to legislate better and I believe that the Hansard Society has put forward some recommendations about how the approach to private Members’ Bills in general could be improved. I absolutely agree that some improvements could be made.

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  I will introduce the petitioners first, because they ultimately prompted the debate; I will then be happy to take further interventions. The petition was initially proposed by Nathaniel Dye, a man who felt the urgency for change and looked at his Parliament to deliver it. Nat was a music teacher, and after being diagnosed with stage 4 bowel cancer in his mid-30s, he campaigned for cancer awareness and support, being recognised with an MBE for his incredible efforts. Nathaniel knew he was going to die, and he believed that Parliament should engage seriously with the issues that affected him and many others with terminal illness. He campaigned strongly in favour of the Terminally Ill Adults (End of Life) Bill, which was introduced by my hon. Friend the Member for Spen Valley (Kim Leadbeater) in the last Session. As a member of that Bill Committee, I had the privilege of meeting Nat on a number of occasions. He was a remarkable man. In his final months, Nat became frustrated—angry, it is fair to say—at how the Lords were dealing with their consideration of the Bill. True to form, he decided to do something about it, starting the petition that we are here to debate today. Nat died in January this year. I pay tribute to him and his family, who have continued to support his efforts following his death. I am grateful to Rebecca Scott, his sister, for meeting me as part of the engagement process for this debate. After Nathaniel’s death, his friend Sophie Blake became the petition’s sponsor, and it is a pleasure to see her in the Gallery today, as it was to speak with her in preparation for this debate, alongside a campaigner from Dignity in Dying. Sophie has incurable stage 4 secondary breast cancer, first diagnosed in 2020. She is allergic to opioids, which form an important part of the palliative care pain relief toolkit, and unfortunately her family have experienced what she describes as “bad cancer deaths”. She does not want her daughter, Maya—also in the Public Gallery—to run the risk of being left with those memories. She wants the option of an assisted death if she feels that that is required. The key demand of Nathaniel, Sophie and the 114,000 petitioners is that Bills supported by MPs and the public must be able to complete all stages of the parliamentary process and to become law; and that the unelected House of Lords should be able to scrutinise, yes, but not block legislation backed by the elected Commons. Sophie and Nathaniel were both determined that the voices of terminally ill people should be at the centre of parliamentary consideration of the Bill. They closely monitored its various stages. They were in the Public Gallery of the House of Commons on Second Reading and of Committee Room 11 for some of the 100 hours of Bill Committee proceedings, where we made more than 100 amendments, including 30 proposed by MPs who had opposed the Bill on Second Reading.

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  I will finish my point. Fundamentally, the question is whether we can achieve social change in this country through parliamentary means, or not. I will just go back to how Sophie, the key petitioner, felt. She summed it up in the following way: “I’m living with incurable cancer and I know how precious time becomes when you’re facing the end of life. Watching Parliament waste that time because of the actions of a tiny number of unelected politicians is heartbreaking”. It is not that the House of Lords was improving the Bill. It may have been in some cases, but the fact that the House of Lords, in 16 days, did not divide once and decide on one amendment—

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  I thank the hon. Gentleman for his intervention. I agree with him—as does Rod Liddle, a journalist who did not support changing the law and was an opponent of the Bill. He said: “The truth, I am ashamed to say, is that in the case of the assisted dying Bill, my side won by cheating…What was not right was for opponents of the Bill, no matter how strongly they felt, to use machinery rather than honest debate to get the Bill booted out.”

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  I agree entirely. I absolutely respect the fact that others, including opponents of the Bill, reach different judgments on this difficult issue. Ultimately, as I said, in our parliamentary democracy that is for Parliament to resolve, on the balance of judgment of its constituent-elected MPs. That is explainable to our constituents. If something that constituents wish for is decided on by Parliament, that can be explained; what struggles to be explained is when tactics and filibustering are used to not reach a decision at all. I will come on to talk a little about that. At this stage, it is important to say that I spoke to groups opposed to assisted dying as part of my preparation for the debate—again, not to discuss the substance of assisted dying itself, but, as part of balance, to get their view about the process. It is fair to say that their position includes the assertion that the Lords were justified in not reaching a decision on the Bill because Commons consideration in Committee was flawed. I personally disagree; having sat in Committee for more than 100 hours—way in excess of nearly any other Bill—I might be expected to say that. Those exact same arguments, however, were available to Members before Third Reading.

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  My hon. Friend is right, as is my hon. Friend the Member for Spen Valley (Kim Leadbeater). I have heard it said that it was inappropriate for this issue to be brought as a private Member’s Bill, but equally we know that it would have been inappropriate for it to be included in any party’s manifesto. I see opponents of the Bill, as well as proponents of it, nodding in assent. Clearly, both public opinion and parliamentarians’ opinions on this issue are not split across party lines. The Prime Minister was clear in advance of the general election that he favoured a free vote to decide this issue—not on what the outcome of the issue should be—and that a private Member’s Bill was an entirely appropriate mechanism to achieve that. I hear some opponents saying, on the one hand, that a private Member’s Bill was never appropriate to do this but, on the other hand, that it would not have been appropriate to include this issue in a manifesto. Therefore, one is left to conclude that those opponents think there is no viable vehicle for social change in this country.

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  Will my hon. Friend give way?

• 8 Jun 2026 · Progression of Bills through Parliament · Hansard source

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  We reached a decision. Does my hon. Friend not agree that it should be respected?