Spinal Muscular Atrophy: Newborn Screening Test

James Naish Excerpts

Monday 22nd June 2026 Westminster Hall

[Alison Bennett (Mid Sussex) (LD)]

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

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

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

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

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

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

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

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

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

[James Naish (Rushcliffe) (Lab)]

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?

[Alison Bennett]

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.