Spinal Muscular Atrophy: Newborn Screening Test

Amanda Martin Excerpts

Monday 22nd June 2026 Westminster Hall

[Lewis Atkinson]

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.

[Amanda Martin (Portsmouth North) (Lab)]

Thank you, Mr Mundell, for your chairmanship. I, too, pay tribute to the determination of Jesy Nelson and all the parents and young people who have been campaigning for this. I was alarmed to discover from parents this weekend that Portsmouth will not be included in the roll-out of the SMA screening this October. That means that babies born in my city will miss that early diagnosis and will face potentially devastating conditions that early treatment might well have saved them from. My hon. Friend the Member for Portsmouth South (Stephen Morgan) and I have written to our integrated care board to find out why Portsmouth is not included and whether it will change its mind.

[Lewis Atkinson]

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?”

--- Later in debate ---

[Lewis Atkinson]

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.

[Amanda Martin]

rose—

[Munira Wilson]

rose—

--- Later in debate ---

[Liz Twist]

I certainly do agree. The test should be made available to everyone to prevent people from living with the effects of SMA that could have been diagnosed and treated.

As I was saying, it is important that we now have testing, but we must expand it to the whole of the UK very quickly.

[Amanda Martin]

Does my hon. Friend agree that we need to ask the Government why babies born in Portsmouth matter less than babies born in other parts of the country? If we are one of the six areas that will not have testing or screening, the babies born in my city have less chance and are therefore less valued.

[Liz Twist]

I certainly agree with my hon. Friend’s point, which was also made by my hon. Friend the Member for Sunderland Central. All babies should have access to treatment. We know the clinical consensus is absolute.

In February 2025, leading clinicians published a letter in The Lancet contrasting the UK with countries that have screening programmes. In Belgium, babies born with SMA are ambulant. In the UK, babies with the exact same condition are still dying or remaining permanently reliant on ventilatory support and tube feeding. On the wider issue of newborn screening, a range of conditions could be the subject of testing, but we are behind the world on testing. Genetic Alliance UK and the APPG on rare, genetic and undiagnosed conditions are asking for a clear timeline for a systematic review of the NHS newborn screening programme from each of the four Governments across the UK to ensure that we do not miss the opportunity to give more children a better and a healthier life.

Returning to the issue of SMA screening, the UK National Screening Committee’s updated model from August 2025 confirms that introducing screening would prevent three early deaths and stop two babies from requiring permanent ventilation every single year. Crucially, it would also prevent about 30 babies from being confined to sitting and enable 37 babies annually to live largely normal lives.

There is a rigorous financial case for acting now. Treating SMA pre-symptomatically reduces the need for lifelong mechanical ventilation and round-the-clock care. Introducing newborn screening would result in lifetime savings to the public purse of over £62 million and 529 quality-adjusted life years for each annual cohort of newborns diagnosed.

I was relieved by the Government’s announcement last month that the in-service evaluation for SMA screening will finally begin in England this October. However, the Government confirmed on 16 June that the evaluation will cover only part of the country. Specifically, it will launch in only the seven newborn screening laboratories that already have the required equipment. There must be a way of getting around that problem so that all our babies can be tested and receive appropriate treatment if necessary. The Scottish Government began a national screening pilot for all newborns earlier this year, and Ireland announced the introduction of its own screening programme in April.

We cannot accept a health system in which a baby’s chance of typical neuromuscular development depends entirely on the hospital in which they happen to be born. Will the Minister confirm whether the evaluation will be extended immediately to cover all of England, as well as Wales and Northern Ireland, for the sake of those children? We have the treatment, economic case and diagnostic tools; we must stop denying babies the chance of a healthier future.

--- Later in debate ---

[Mrs Hodgson]

I was going to come to the point about labs, but let me address it now. My hon. Friends the Members for Newport West and Islwyn (Ruth Jones) and for Portsmouth North (Amanda Martin); the hon. Member for Keighley and Ilkley (Robbie Moore); the shadow Secretary of State, the right hon. Member for Daventry (Stuart Andrew); and others have made that very point. The trials will be rolled out to seven of the 13 labs, which leaves six labs outside the trial. I am told that the reason is that, as it is such a rare condition, the trial has to be broad enough to ensure a robust evidence base. The six not included do not currently have the requisite equipment. If that changes, more labs could be included.

[Amanda Martin]

I thank the Minister, who I respect her massively, for her comments. Portsmouth hospital is part of the generation study, so it is already able to test for the condition and could have rolled out the evaluation had it been included in the trials. It seems very strange that we are able to test babies in the generation study but not across the board.

[Mrs Hodgson]

I thank my hon. Friend for that intervention. My hon. Friend the Member for Sunderland Central also mentioned the generation study. There are lots of questions around this, and, as I am sure my hon. Friend the Member for Portsmouth North is aware, in preparing for this debate, I have been asking lots of those questions. I will take that point away and get back to her.

As we have heard, spinal muscular atrophy affects every part of daily life for the children and families involved: their routines, milestones, plans and the hopes that families hold for their children. Any progress against it matters deeply. At the same time, NICE has been clear that important questions remain, including around longevity and how long the benefits of these relatively new treatments may last. Those questions, alongside important issues of feasibility, must be answered before a national screening decision can be made.

That is why my Department has worked with the National Institute for Health and Care Research and NHS England to establish an in-service evaluation. That evaluation will run within the routine newborn blood spot screening programme to gather the evidence that we need, help answer difficult questions and fill the gaps that stand between us and a confident national decision. Crucially, the Department has worked alongside patient advocate groups, including the SMA NBS Alliance and SMA UK. I commend both groups for their excellent support and advocacy. They help to ensure that families’ voices are not an afterthought but are at the heart of decisions.

I acknowledge that, as we have heard, many have been frustrated by the pace of planning for this large-scale scientific evaluation. I hear that frustration—I really do—but we must get this right, because only a strong evaluation will give us the answers that families deserve and the evidence that a national programme requires.