Spinal Muscular Atrophy: Newborn Screening Test

Robbie Moore Excerpts

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.

--- Later in debate ---

[Mrs Hodgson]

Again, I have heard my hon. Friend’s remarks. They are not falling on deaf ears, as I am sure she is aware.

The previous Secretary of State, my right hon. Friend the Member for Ilford North (Wes Streeting), met Jesy Nelson, along with Giles Lomax from SMA UK, and I know that that had a massive impact on him. They spoke at length about what is needed; he listened and we acted. That is why I was very happy to announce just last month that the planned start date of January 2027 would be brought forward by three months. The new start date for the in-service evaluation will be October 2026. From that date, babies will begin to be screened for SMA, and we will begin collecting the essential information needed to help many more children in the years ahead.

[Robbie Moore]

I am pleased that that announcement was made, but, as I reiterated in my speech, that provision does not include West Yorkshire or my Keighley and Ilkley constituents. The Minister said that a broadbrush approach was needed to gain data, and that has been rolled out to the areas that the Government have already announced, but surely it is necessary to include all areas, as many Members said. Will the Minister meet me or write to me about what steps can be taken to include areas such as West Yorkshire, Leeds, and Keighley and Ilkley as part of the screening programme?

[Mrs Hodgson]

I have asked those very same questions. As it is such a broad trial, the small number that is not covered does lead me to ask those questions. I have not given up asking those questions, but for today, the answer is the same as the one I gave to my hon. Friend the Member for Newport West and Islwyn.