Spinal Muscular Atrophy: Newborn Screening Test

Debate between Robbie Moore and Munira Wilson

Monday 22nd June 2026 Westminster Hall

[Robbie Moore (Keighley and Ilkley) (Con)]

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

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

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

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

“to fund and help fast-track the process to add SMA to the NHS newborn heel-prick test”

so that every baby is

“screened at birth to allow early diagnosis and access to life-changing treatment.”

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

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

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

[Munira Wilson]

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?

[Robbie Moore]

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.

Planning and Infrastructure Bill

Debate between Robbie Moore and Munira Wilson

Report stage
Tuesday 10th June 2025 Commons Chamber

[Munira Wilson (Twickenham) (LD)]

It is an honour to speak in this important debate. I will address three amendments that stand in my name: amendments 88 and 89, which go together and relate to hope value, and new clause 107, which relates to the disposal of public land.

Amendments 88 and 89 are linked and represent a simple yet important change to the Bill. They would extend the circumstances in which hope value may be disregarded in the event of a compulsory purchase order to include playing fields and recreational facilities. I and my Liberal Democrat colleagues warmly welcome the important changes in the Bill. Ministers have brought forward measures to reform the CPO process for the purpose of building more affordable homes, so that hope value no longer over-inflates land prices for acquiring authorities. However, I believe that a prime opportunity has been missed. As such, my amendments seek to include recreational facilities such as playing fields in these provisions when an acquiring authority—for instance, a local authority—is using a compulsory purchase order to acquire land for use as a sports or recreational facility. They would ensure that hope value would not be applied, thus making the cost more affordable and helping to boost grassroots sports provision in communities up and down the country.

We in Twickenham, Teddington, the Hamptons, St Margarets and Whitton are incredibly fortunate to have a thriving grassroots sports scene, from football to cricket, rugby, hockey, tennis and much more. Girls’ and women’s football is just one example of the continued growth in grassroots sports in my constituency; my own daughter plays with the growing number of girls’ teams at Whitton Wanderers, and Twickenham Cygnets now boasts over 300 girls and has 40 women—Twickenham Swans—on its books. However, they are at the point of turning more away because they simply cannot get the pitch space to train and play matches. This problem affects many clubs across the country, and certainly right across the London borough of Richmond upon Thames. At the same time, we have the absolute scandal of Udney Park playing fields in Teddington lying derelict for more than a decade, with successive developers paying over the odds for the site, only to be rightly prevented from developing it; that precious site has numerous protections attached to it.

The brilliant Udney Park Community Fields Foundation —a community group in my constituency led by Jonathan Dunn, who has been a tireless campaigner for grassroots sports—has repeatedly bid for the site to bring the playing fields back into community use. The current owner has given notice that he wants to sell the playing fields, but has not engaged with the foundation at a realistic playing fields valuation. Trying to recoup a high purchase price for this precious and well-protected site does not look feasible. Extending the Bill’s provisions to playing fields to allow hope value to be disregarded for a compulsory purchase order could allow such sites to be acquired by the local authority or another public body.

Richmond council, like many other local authorities, is hardly awash with cash, but simply having that provision in law would provide leverage for community groups when they have to negotiate with developers, as we have seen in the case of Udney Park. I am certain that Udney Park is not the only example where this is happening. I was therefore extremely disappointed by the Minister’s response to these amendments in Committee, which, with all due respect, was contradictory. He rejected them on the following basis:

“Affordable housing, education and health are types of public sector-led development where the public benefits facilitated through the non-payment of hope value can be directly demonstrable to local communities. The Government have concerns that the provisions would be less compelling for sporting and recreational facilities.”––[Official Report, Planning and Infrastructure Public Bill Committee, 20 May 2025; c. 489.]

I say that sport and physical activity are critical to physical and mental health, and he said that health is an important public benefit for the purposes of disregarding hope value.

Just yesterday, Ministers in the Department for Culture, Media and Sport stated that the Government

“are committed to supporting the growth of grassroots sports across the UK.”

The Secretary of State for Culture, Media and Sport made a brilliant speech last night at an event attended by many Members in this place to launch the inspirational Lionesses’ campaign to defend their European crown. She was passionate about the importance of grassroots sports and extending opportunity to every community. She has announced £100 million of investment in grassroots sports facilities, which is extremely welcome.

The change proposed through my amendments would help Ministers to achieve the important objective of expanding sports and recreation grounds without costing them a penny. It would not encroach on the principle that the use of CPO powers must be proportionate and justified in the public interest, given that Ministers have so strongly and correctly championed the growth of grassroots sport across the UK as being in the public interest. The amendments would apply solely to land that is already sports field or recreational land, where there is local need for that sports and recreational facility and it is at risk of loss to speculative development.

It is entirely proportionate and justified in the public interest that CPO powers and the removal of hope value should apply in such circumstances, so it defies all logic that Ministers have not embraced this change and that they continue to oppose it. I look forward to hearing an explanation from the Minister. I hope he will at least commit to engaging further on this issue as the Bill moves to the other place. Perhaps he will meet me to discuss it, rather than dismissing it completely.

Let me turn to new clause 107, which is also in my name. There is cross-party consensus on the dire need for more housing across our country. The Liberal Democrats have a strong commitment to delivering desperately needed social housing, so it was disappointing to see Labour Members vote against our amendment 15 last night to write a social housing target into law. One important way to secure sites for social and affordable housing is when public bodies dispose of land and buildings. In constituencies such as mine, with its royal park, a river and other important protected parks and spaces, sites are few and far between, yet week in, week out I see cases in my inbox and at my constituency surgeries of families on the social housing waiting list for years, with little hope of getting out of desperately overcrowded and unsuitable accommodation.

I am incredibly proud that Liberal Democrat-run Richmond council has consistently sought to repurpose, and sell below market value, sites that it owns but no longer needs to provide for more social homes from which families in my constituency can benefit. The council has done this despite the immense pressures on local government funding, but sadly other public bodies do not feel able to do the same, whether they are national Government Departments such as the Ministry of Defence, key public services such as the Metropolitan police, or arm’s length bodies such as NHS England. They all want to achieve as high a price as they can when selling assets that they no longer need in order to be able to invest in frontline public services. That is a laudable and important aim, but it prices social housing providers, and other public service providers, out of the market, while losing assets from the public sector balance sheet at the same time.

New clause 107 would fill the gaps in the existing patchwork of legislation and regulation that is somewhat piecemeal in the public bodies included and is not properly used to allow all public sector bodies to sell assets below market value for public benefit, whether that is for social housing or for much-needed community infrastructure like health facilities or a community centre. Not only would it extend that provision to all public bodies; it would go further still by imposing a duty on all public bodies to at least consider disposing of assets for public good.

This wide-ranging new clause builds on my successful campaign in the last Parliament, when I worked with a succession of Conservative Housing Ministers to secure a change in the then Bill, which became the Levelling-up and Regeneration Act 2023, that included police authorities under existing provisions to sell public assets below market value for public good. My campaign was born of frustration about the fact that the disused Teddington police station lies derelict in my constituency. A local housing association and the Park Road GP surgery are desperate to obtain the site to expand and provide state-of-the-art GP facilities on the ground floor, as well as much-needed social housing on the floors above. This Government think that all members of the public are blockers, but I can tell the Minister that the Teddington community are right behind my campaign, and we will fight tooth and nail to ensure that when the Met puts the site on the market we can obtain the GP surgery and housing that our community desperately need at a reasonable price, which will almost certainly not be as high as private developers can offer.

I secured the legislative basis to achieve that ambition in the Levelling-up and Regeneration Bill, but in many other cases the provision is not there or is not used. Furthermore, the amount below market value for which some public sector bodies can dispose of their assets has not been updated since 2003. New clause 107 seeks to address that anomaly, although I note that the Conservative Government made a commitment to consulting on and reviewing the amount—something that did not happen before they left office, and something that the present Government have not implemented since they took power last year.

The Chancellor herself has previously said that surplus Government land is a

“huge untapped resource that could create opportunities for the next generation of homeowners.”

I warmly welcomed the news in March that Network Rail would set up a property company to use surplus land for house building. There is so much more than just Network Rail land, but we need both the legislative basis for public sector disposals below market value and the incentives to achieve those sales. I do not blame the Metropolitan Police Commissioner for wanting to get top dollar for Teddington police station, especially when I read about the cuts that he is having to make to frontline policing and the intransigence of the Treasury when it comes to proper funding for the community policing that the Government have promised.

I say to Ministers that this is robbing Peter to pay Paul. We need a duty on all public bodies, and financial incentives from the Treasury for them to repurpose or sell their assets for community good. We can achieve the homes and public services that our country desperately needs, not by ripping up our green belt and precious open spaces but by thinking creatively about how we repurpose existing sites, including those already owned by the taxpayer. I look forward to hearing the Minister’s response.

[Robbie Moore]

I rise to speak about new clause 127 and amendment 153, both of which are in my name.

Compulsory purchase is a highly emotive and highly controversial subject. Indeed, much of yesterday’s debate was taken up by discussion of precisely the new CPO powers that the Bill will grant to Natural England and local authorities. The fact that under the Bill a farmer in Keighley can be told how to use his land, on pain of a CPO, as a result of a development in Kent is complete and utter madness, but that is exactly the intention of the Bill. No matter where someone owns land, they may be put at detriment by a scheme that is taking place elsewhere. That is exactly what the Government intend to do through the additional CPO powers: to give Natural England—an organisation with which I have huge frustration and which, dare I say it, is not accountable robustly to a Minister—more power to use compulsory purchase orders.