Stuart Andrew
MP for Daventry · Conservative · United Kingdom
“The Minister will know that Onley Park is still owned by the Ministry of Justice. Although I welcome the funding, these residents have been waiting years, and frankly they are really worried—we have still not got a start date or clarity around backdated bills, and the situation is affecting house sales now.”
“My hon. Friend is making an important point about HSSIB. We have heard time and again that frontline staff value the safety that HSSIB provides to them and the confidence they have in reporting.”
“Despite what we have heard from the Minister, colleagues have been talking about the issue of developments near railway stations. That has a practical consequence for the rural village of Long Buckby in my constituency. Land that is currently in open countryside, beyond the village boundary, will now be designated as a priority area.”
“In a volatile world, I think we can all agree that energy security is important, but so too is food security. I was interested in the answer the Prime Minister gave to my hon.”
“Well, that was clearly no answer to my question, so let me give it: the Government’s own figures show that the number is higher. Additionally, in response to concerns that I have raised, the Office for Statistics Regulation confirmed that the published figures do not clearly distinguish between patients who are treated and those who are r…”
“Women’s symptoms may simply be dismissed or attributed to stress, hormones or ageing, and women have been consistently under-represented when it comes to cardiovascular research.”
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“Well, that was clearly no answer to my question, so let me give it: the Government’s own figures show that the number is higher. Additionally, in response to concerns that I have raised, the Office for Statistics Regulation confirmed that the published figures do not clearly distinguish between patients who are treated and those who are removed from waiting lists without treatment. With consultants now taking strike action and the situation potentially getting worse, how can the Secretary of State prove that patients are actually being seen faster, rather than that statistics are being massaged?”
“The speed of recognition, ambulance response, brain scanning and access to thrombolysis and thrombectomy can profoundly affect a person’s chances of survival and recovery. However, 24-hour coverage has still not been achieved, as my right hon. Friend the Member for Rayleigh and Wickford mentioned. The Government say that progress is being made, but patients need to know when every part of England will have reliable access to this life-changing treatment. Will the Minister set a firm date for that full 24/7 coverage, and will she explain how progress will be maintained while NHS England’s responsibilities are being transferred?”
“Women’s symptoms may simply be dismissed or attributed to stress, hormones or ageing, and women have been consistently under-represented when it comes to cardiovascular research. The Government’s renewed women’s health strategy recognises some of those problems, and the commitment that publicly funded research should properly consider sex-based differences is really welcome. However, such recognition must translate into practice. Will the framework include measurable action to reduce sex-based inequalities in prevention, diagnosis, referrals, treatment and outcomes? And will women’s specific cardiovascular risk factors, including pregnancy history, gestational diabetes, menopause and autoimmune disease, be considered more consistently in NHS health checks and other assessments? As we have heard, every minute matters for stroke patients.”
“That can mean that diagnosis comes only after the disease has become severe, and after irreversible heart damage has begun. Listening to the heart with a stethoscope remains a simple and low-cost first step. Where heart valve disease is suspected, patients need timely access and a clear route to specialist services. Will heart valve disease be explicitly included in the framework? And will the Government consider a single point of access for referrals to specialist valve services? We must also confront the inequalities experienced by women. Cardiovascular disease kills more than 80,000 women in the UK each year, yet women are less likely than men to have their risk factors assessed, slower to receive a diagnosis, less likely to be referred to a cardiologist and also less likely to receive cardiovascular medicines or interventions.”
“Early testing for people with diabetes, high blood pressure and cardiovascular disease can identify kidney damage before it progresses. Indeed, Kidney Research UK suggests that less than one in five patients with chronic kidney disease receive SGLT2 inhibitors, despite their potential to reduce major cardiovascular events. Will kidney disease therefore be explicitly included in the modern service framework? What action will the Government take to improve early diagnosis and equitable access to proven treatment? Early diagnosis is just as important for heart valve disease. In the UK, 1.5 million people live with that condition. Again, however, symptoms such as breathlessness, fatigue and dizziness are too often mistaken for the ordinary effects of ageing.”
“Those services need the workforce, the time and the technology to identify risk and manage it properly. Detecting and treating high blood pressure and raised cholesterol must be regarded as core NHS work. The Government inform us that the NHS health check programme prevents about 500 heart attacks and strokes each year, which really is welcome, but the question is whether it reaches those at the greatest risk, including people in deprived areas. We must also recognise the close relationship between cardiovascular disease and kidney disease. Kidney disease affects an estimated 7 million people in the UK. About 60% of kidney patients are diagnosed only in the later stages, when their cardiovascular risk is highest. About 20,000 kidney patients die from cardiovascular disease each year.”
“If we are serious about reducing premature deaths, the focus must be on prevention, earlier diagnosis, timely treatment, reducing inequality and proper support after the patient leaves hospital. We must begin with prevention, because high blood pressure and high cholesterol can exist without obvious symptoms. People may feel perfectly well while living with a condition that substantially increases their risk of heart attack or stroke. By the time somebody becomes seriously unwell, an opportunity to intervene may have already been lost. Prevention cannot simply mean advising people to live healthier lives. It means identifying those at risk, ensuring that NHS health checks reach the communities that need them most, and making full use of GPs, primary care teams and community pharmacies.”
“I saw at first hand the incredible work it does, particularly on research. I thank it and all the other charities and organisations that are active in this space. As we have heard so often today, heart disease and stroke continue to take people from their families far too soon. The hon. Member for Strangford spoke so powerfully about the 350 people in his area who are no longer around the table. Behind every statistic is a life cut short and a family left grieving, in too many cases in the knowledge that earlier action might have changed the outcome. A person’s chances of surviving heart disease or stroke should not depend on their postcode, income, sex, ethnicity or ability to navigate the health service.”
“I thank her for her work with the APPG, and particularly for highlighting the issue for young people. It is important to remember that heart disease and stroke affect all age groups. I thank the hon. Member for Strangford (Jim Shannon) for his work on the APPG and for his kind words. I visited his constituency when I was a Minister. If only I could have as much love as he gets from his constituents—he is hugely respected. I feel like we will all have to club together to get a bat-phone for the hon. Member for Southport (Patrick Hurley). He made some incredible points, particularly about smoking. I confess that I gave up smoking in February. It was hard, but I know how important it is. I declare an interest. I, too, want to pay tribute to the British Heart Foundation, which was the first charity I worked for in my charity career.”
“It is a pleasure to serve under your chairship, Dame Siobhain. I congratulate the hon. Member for South Ribble (Mr Foster) on securing this important debate and talking about his personal circumstances. It is always a very moving moment when colleagues talk about things that are so very personal to them. I also pay tribute to the wife of my right hon. Friend the Member for Rayleigh and Wickford (Mr Francois) for the work that she and her team do. It was fascinating to listen to my right hon. Friend. There may have been a bit more detail than I would have wanted to hear, but it told us a lot about the importance of that treatment. I share an ambulance region with the hon. Member for North West Leicestershire (Amanda Hack), so I know exactly what she is talking about and how important it is.”
“Targets matter, but patients will judge success by whether they receive the right care in time, and that must be the measure of genuine success. They and their families deserve nothing less.”
“Will the Minister commit to regular, transparent reporting to Parliament so that Members can see whether earlier diagnosis, access to treatment and premature mortality rates are genuinely improving? There is much on which Members across this House should agree. We all want fewer families to lose someone they love before their time; we all want patients to receive help before a manageable risk becomes a medical emergency; and we all want NHS staff to have the tools and capacity to provide the care their patients need. Reducing premature deaths from heart disease and stroke is achievable, but only through earlier identification of risk, faster diagnosis, timely treatment and rehabilitation that is available wherever a patient lives.”
“Cardiac rehabilitation, medication reviews and support to manage risk factors can prevent further illness and save lives, yet access to rehabilitation remains uneven and too many patients experience a cliff edge between hospital and community care. The Government have committed to reducing premature deaths from heart disease and stroke by 25% within a decade. That is a serious ambition, and, where they are taking practical actions to achieve it, they will absolutely have our full support, but it is important that that ambition is matched by a credible plan. In a letter dated 28 May, the Minister said that the framework we are expecting would be published in the spring. That deadline has now passed, so, like others, I again ask when that will be published. Will it contain clear milestones against which that 25% commitment can be judged?”
“My right hon. Friend is so right. When he was describing its importance, I was thinking about one of my very dear friends who suffered quite a debilitating stroke. I thought, “If only that had been available for him, how different his life might be now.” I thank my right hon. Friend for raising that. Care should not end when a patient leaves the acute ward. Someone who has survived a stroke might need to relearn how to walk, speak, eat and carry out other basic daily tasks. Rehabilitation and continuing community support are essential if people are to regain their independence and reduce the risk of another stroke. The same is true after a heart attack.”
“As I said last week, both to the House and to the Secretary of State privately, I want us to work together constructively. Where the Government act with the urgency that the report demands, they will have our full support. We all have a duty, and ours is to support these changes. Women and families will not judge today by new structures, promises or another report. They will judge it by what happens when a woman says that something is wrong. Is she heard? Are warning signs acted on? Is senior help available when needed? Are maternity units safely staffed? Can staff speak without fear? Do families receive honesty and compassion when harm occurs? Are fewer mothers and babies coming to harm? When decisions are taken, will they be fully explained? The evidence has been gathered. Families have told their stories. The system has been warned.”
“The 10-year workforce plan has been promised, delayed and pushed back repeatedly. When will it finally be published, and will it provide the permanent workforce that these recommendations require? With women having babies later and pregnancies becoming more complex, how will those at higher risk receive early specialist care? I agree with the Secretary of State that the culture has to change. Listening to women is a clinical duty, not a courtesy; as I said last week, it is at the core of our safety issues. When concerns are dismissed, warning signs are missed, and mothers and babies are put at risk. That duty must apply equally in respect of every woman. A woman’s safety must not depend on her ethnicity, first language, disability, income or ability to fight through the system.”
“Will the estates funding include accommodation for parents close to neonatal units so that families are not separated from their critically ill babies? We do not oppose a statutory maternity and neonatal commissioner, but Ministers must be clear about the role’s purpose, powers and accountability, because just one person cannot bring the change that is needed; local leaders have a responsibility too. When will the commissioner be appointed, and what will they be able to compel trusts, regulators and national bodies to do? How will local leaders be held accountable when care remains unsafe? The additional midwifery posts are welcome, but temporary roles are not a sustainable workforce plan. Donna Ockenden has warned of rota gaps and of staff leaving obstetrics and midwifery.”
“The Birth Trauma Association says that the report has overlooked serious injury to women and brain injury to babies, so will the action plan address those harms, and how will families shape and scrutinise it? We welcome the work beginning immediately on triage, discrimination, staffing and urgent estate risks. This is so important, and we must get on with that work, but families cannot wait until the end of the year for the wider plan. Those expecting babies now need reassurance about what will change and when. So many must be anxious, and we need to do all that we can to reassure them. The new triage standards will be published this week. By when must every trust meet them? Will the Secretary of State commit to update the House, by oral or written statement, on trust-by-trust progress?”
“Donna Ockenden said this morning that, sadly, so much in this report is stuff that we already knew. She also raised concerns about waiting until December, and I welcome the fact that the Secretary of State has just announced some of the work. She also said that no commissioner alone can fix a system needing action from every level from the Secretary of State right down to every ward. Donna Ockenden commands enormous respect and we should all listen to her, because she is right. When will the Leeds and Sussex reviews produce their reports, and how will Ministers act on concerns before they conclude, so that families in those areas can see the change that they need as soon as possible? Families should not have to keep proving the scale of harm. Their testimony must now lead to action.”
“I thank the Secretary of State for advance sight of his statement, and I thank Baroness Amos and her team for their compassionate work. As I said last week, I pay tribute to the women and families who gave evidence and to the babies at the heart of the inquiry. Many revisited the most painful moments of their lives after years of fighting to be heard. Their courage places a responsibility on us all. Last week, the House confronted Donna Ockenden’s devastating findings in Nottingham. Today we face the wider national picture. Successive investigations expose the same failures: women dismissed, deterioration missed, staff silenced, inequalities unchallenged and leaders failing to learn. The problem is no longer a lack of evidence; it is a failure to act.”
“Where the Government act to improve safety, accountability, staffing and family voice, they will have our support so that we can see this through together. Where they do not, they will face our scrutiny. This review began with families who had to fight to be heard. The task now is to ensure that no family has to fight so hard again.”
“The safety of a patient must not depend on confidence, class, ethnicity, language or an ability to fight through the system. The issue with our mortuaries is also really shocking. The horror stories that we have heard must never happen again. Is the Secretary of State working with colleagues in the Department of Justice to see what more needs to be done to overhaul this area? Finally, we must recognise the psychological harm caused through silence, poor communication, lack of bereavement support and the battle for honesty. We know that our mortuaries need to have the highest standards. Compassion after harm is not a courtesy; it is a duty. Trust is rebuilt when women feel the difference in the room, when words change decisions, when staff speak without fear, when risk is escalated in time and when boards are judged by results.”
“It must be accompanied by a delivery plan, so will the Secretary of State publish a national implementation plan with named accountability, delivery dates and regular updates to this House? That plan must address the workforce so that staff have the support and information they need to fulfil their roles to the ability they wish. That plan must design services for today and the future, not rely on assumptions from the past. Women are having children older, pregnancies are more complex and more women are entering pregnancy with pre-existing conditions, previous loss, fertility treatment, mental health needs or circumstances shaping care. That means a need for practical, personalised care, informed choice and each woman being treated as a whole. The review also requires us to confront inequalities.”
“The review describes bullying, hierarchy and poor psychological safety affecting staff’s decisions and willingness to escalate. I pay tribute to those who were brave enough to do so. In maternity and neonatal care, minutes matter. If staff cannot challenge, safety is weakened. Staff cannot provide the care they want to if they are exhausted or unsupported, or if hierarchy matters more than candour. So I ask: how will boards be held accountable for that ward culture? The third test is the delivery test. Harm rarely followed one error; it usually followed a chain of poor communication, weak risk assessment, delayed escalation, staff pressure, inadequate governance and missed learning. The response cannot be a single announcement.”
“Maternity and neonatal safety has challenged Governments of both parties, but it would be wrong to let that history soften the urgency. Women and families are tired of telling their story, hearing promises and seeing the same themes return. The question is whether the system will move because of this review, and so I put three tests to the Secretary of State. The first is the listening test. Women and families were not consistently listened to. Their concerns were too often dismissed or not acted upon. That is not a soft issue; it is a safety issue. How will the Government embed listening as a clinical discipline? How will trusts measure whether women feel heard? Will complaints and near misses be treated as information for improvement? The second is the culture test.”
“To them, we owe a profound apology for failing them when a family should feel safest, most supported and most able to trust the care around them. For too many, that trust was broken; women were not listened to, families were not believed and warning signs were missed. Some suffered the deepest lost, others were left physically unsafe and others psychologically scarred. No statement can repair that pain, but it can mark the point at which testimony becomes responsibility, and responsibility becomes action. The painful truth is not only that the failings occurred but that the themes are familiar: women not heard, families dismissed, poor communication, missed deterioration, weak governance and people unable to speak up.”
“I thank the Secretary of State for advance sight of his statement and Donna Ockenden and her team for the care and compassion with which they conducted the review. We had a meeting with her yesterday, and I have to say that it was probably one of the most difficult meetings that I have ever had. I pay tribute to the hon. Member for Sherwood Forest (Michelle Welsh). I can see how deeply personal and painful this is, and I admire her and all her colleagues from the region at what must be a very difficult moment. Let me say from the outset that I want to be constructive in opposition when it comes to this issue. We need to work together; we have to see improvements. I begin with the women, babies, fathers, partners and families whose lives sit behind the review’s findings.”
“There will be parents listening who feel judged. There will be clinicians listening who are trying to do their best in a difficult and contested area. Let us be clear: our concern is not with the dignity of any child—their dignity is beyond question. Our concern is with the decisions made by adults in positions of power. Children deserve adults who can hold two truths at once: that their distress must be taken seriously, and that serious distress does not automatically justify experimental medical treatment.”
“Surely the first duty is to learn from what has already happened and therefore potentially identify wherever there may be gaps. That is not obstruction; it is responsibility. The Government must not ignore the wider context. Many children who experience gender distress also have other needs: mental health difficulties, autism, trauma, family pressures, anxiety, depression, eating disorders or safeguarding concerns. Dr Cass was clear that services must look at the whole child and not just one aspect of identity. We should not accept a system that is slow to provide holistic support but prepared to move ahead with powerful medical intervention under the banner of research. The House must be honest about the tone of this debate. There will be young people listening who will be feeling frightened by it.”
“Unease is sometimes the proper response of conscience. The Government point to safeguards, but safeguards are not the same as certainty. Monitoring every three months may identify some problems, but it cannot guarantee that long-term harm will not emerge years later. Objective withdrawal criteria may be better than vague discretion, but they do not remove the risk of treating a child unnecessarily in the first place. The Government have still not answered a fundamental question: why proceed now before the existing evidence has been fully examined? There are children and young people who were treated under previous services. There is data that may help us to understand outcomes. There is a Tavistock-related evidence base that should be completed and analysed before more children are exposed to puberty blockers in a new trial.”
“Those are not abstract questions; they go to the integrity of consent itself. In most areas of medicine, when the risks are serious and the benefits uncertain, we become more cautious, not less. We do not reassure ourselves merely because the cohort is small, or say that because only a limited number of children may be exposed, the ethical concern is reduced. For each child in the trial, the consequences are enormous and personal. For each family, the decision is life-altering. For each future adult, the question may one day be, “Did the people in authority protect me properly?” The Secretary of State has said he feels “discomfort and unease”. I welcome that honesty, and I believe it to be heartfelt. Yet discomfort in this area should not be something that Ministers try to manage away; it should make them stop and think again.”
“The routine prescription of puberty blockers on the NHS was ended because the evidence did not justify the practice. That was not a rejection of vulnerable young people; it was an act of safeguarding. The Government now say that this trial is different. They say that it is not routine prescribing and that there will be monitoring, consent, assessment and withdrawal criteria. Yet process cannot answer the central moral question: can a child, at the start of puberty, truly understand the impact of interrupting that stage? Can an 11-year-old meaningfully consider questions of fertility, bone development, cognitive effects, sexual function and future regret? Can a parent, faced with a distressed child and a desperate sense of need for relief, rationally navigate the uncertainty without enormous pressure?”
“But the question before us is not whether research matters—of course it does—but whether this particular trial involving children as young as 11 and 12 is the right and ethical way to proceed. We on the Conservative Benches do not believe that it is. My position is rooted in a simple principle: when evidence is uncertain, risks may be lifelong. When the patient is a child, the burden of proof must be exceptionally high. That is not ideology; that is good medicine. The Cass review changed the debate because it brought clarity to a field that had been allowed to drift for too long. It found weak evidence, poor data, inadequate follow-up and a service model that too often failed to look at the whole child. It was the previous Government who treated those findings with the seriousness that they deserved.”
“Compassion is measured not by how quickly we medicalise a child’s distress but by whether we protect the child’s future and respond to their present pain. That is the heart of the debate. Sadly, those of us who are concerned about this trial are often labelled as transphobic. Personally, I find that offensive. Child safety matters to me, and so does equality for trans people, but we have to think about children. The Government ask the House to accept that the Pathways trial is the responsible way to build evidence. Ministers say that it is a carefully controlled study, that safeguards have been strengthened and that only a small number of children will be involved.”
“This has been an important debate. It has been a difficult debate, but a necessary one none the less. There are some subjects in public life where the easiest course is silence, where every word is weighed, where motives are questioned and where hon. Members may be tempted to step back rather than step forward, but when the subject is the safety of children, silence is not an option. Children and young people are at the centre of the debate. They are not slogans or political symbols to be used by either side of any argument; they are children, and often vulnerable children experiencing distress that can be profound, complex and deeply painful. They need kindness, patience and support from adults who listen and act responsibly. They need services that are timely, professional and compassionate.”
“I can assure the hon. Lady that I have given this an enormous amount of consideration. I understand what she is saying, but my argument is that we already have a set of data on children who have gone through some of these experiences, and that needs to be looked at. Having spoken to some of them, I do not want to see others experience it.”
“We owe them services that see them in the round, and we owe them the humility to admit that when the evidence is uncertain, the answer is not to press ahead and hope; the answer is to pause, learn and protect. For those reasons, I urge the House to support this motion.”
“The Opposition’s approach is careful, proportionate and child centred. We must pause this trial, complete the analysis of existing data, publish a full account of the known risks and unknowns and strengthen non-medical support. Then, and only then, should we consider what further research should be ethically justified. This is not abandonment; it is protection. The first responsibility of any health system is not to validate every proposed treatment, but to ask whether that treatment is safe, necessary and in the long-term interests of the patient. When the patient is a child, that responsibility is heavier still. We owe these young people more than good intentions. We owe them caution. We owe them honesty.”
“I am going to continue because I want to give the Minister the opportunity to respond. The Secretary of State says that this trial will help settle the evidence, but a trial that follows children for a limited period cannot by itself settle questions that may only become clear in adulthood. It cannot fully answer the questions of what a child will think at 25, 35 or 45 about decisions that were made at 11 or 12. When I was in my teens, struggling with my sexuality, it was complex enough. It was emotionally draining. It was scary. I cannot imagine how much harder that would have been if someone had added to the mix by telling me that maybe it was not my sexuality but my gender. This is why we must listen to people like Keira Bell. We must not confuse the creation of some evidence with the resolution of all uncertainty.”
“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.”
“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.”
“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.”
“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.”
“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.”
“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?”
“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.”
“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.”
“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.”
“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 begin by welcoming the Secretary of State and the Under-Secretary of State for Health and Social Care, the hon. Member for Birmingham Edgbaston (Preet Kaur Gill), to their places. The Secretary of State was in the Treasury when it imposed VAT on compassionate access medicine programmes, which provide some patients—especially children with cancer—with a vital last chance to access treatment. The policy has already led to the closure of one scheme. Will he now commit to abolishing this tax before any more follow suit?”