Spinal Muscular Atrophy: Newborn Screening Test

David Mundell Excerpts

Monday 22nd June 2026 Westminster Hall

[Several hon. Members rose—]

[David Mundell (in the Chair)]

Order. I do not intend to apply a time limit to contributions. Members will note that the clocks in Westminster Hall are not functioning. If someone speaks for longer than might be reasonable, I will call them to order. I call Ed Argar, who I am sure will not do that.

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[Ruth Jones (Newport West and Islwyn) (Lab)]

It is a pleasure to serve under your chairship, Mr Mundell. I thank my hon. Friend the Member for Sunderland Central (Lewis Atkinson) for leading this important debate on behalf of the Petitions Committee, and I thank the 306 residents of Newport West and Islwyn who signed the petition. I am delighted to have spoken with the chief executive of SMA UK, Giles Lomax, a number of times, and I pay tribute to his tireless advocacy. I also thank Jesy Nelson for her work raising awareness of SMA following the diagnosis of her twin daughters.

SMA is a serious but rare genetic decision that causes progressive muscle weakness and deterioration, as we have heard. I should declare that, in my previous life, as a paediatric physiotherapist, I treated a number of children and babies with SMA, so I know a bit about the struggles that families go through in coming to terms with the diagnosis, the treatment, the child’s ongoing needs and the aids and adaptation that are required throughout their life.

Currently there is no cure but, thanks to transformative research, treatment can slow symptoms and even stop progression. As a result, early detection and treatment of SMA due to newborn screening can dramatically improve the wellbeing of patients. That includes the significant benefits that have already been highlighted to respiratory health, motor function and, critically, life expectancy.

To be totally hard-hearted about it, catching SMA early via screening saves not only lives, but taxpayers’ money. Without presymptomatic treatment, The Lancet estimates the annual health cost for a single child at about £75,000—not including the wider mental health issues, equipment, carer costs, housing adaptations or disability benefits. Those costs can run into hundreds of thousands of pounds per family. It is therefore not only morally right to roll out the screening to all children straight away; it is also financially prudent.

I am pleased that the Scottish Government have recognised the public case for newborn screening, becoming the first nation in the UK to add SMA to their universal screening programme. If they can do it, why can the rest of us not? It is really important. I am pushing for all constituent nations of the UK to learn from that example and urgently explore how we roll out universal screening for SMA. We cannot risk the postcode lottery mentioned in this debate. Children with SMA should not have their life chances determined by which part of the UK they live in.

I welcome the progress made in England to extend access to newborn screening, although we know it does not go far enough. Around 72% of babies born in England will be screened, but we obviously must go further. The previous Health Secretary, my right hon. Friend the Member for Ilford North (Wes Streeting), committed to expanding the ISE to ensure that more children could be screened, so I would be grateful if the Minister could update us on the progress on delivering that.

While significant progress has been made in England, Wales still has no plans for a screening roll-out, despite being uniquely well positioned to participate in the ISE. Screening facilities at the Cardiff and Vale University health board are currently being upgraded and have the capacity to facilitate newborn blood spot screening for every child born in Wales. A single, one-off and modest investment of around £1.5 million could therefore deliver 100% coverage and certainty for the parents of the 27,000 children born in Wales every year.

Given that unique opportunity, the decision thus far by the Welsh Government not to participate in the ISE is extremely frustrating. I wrote multiple times to the previous Welsh Cabinet Secretary for Health and Care, urging him to reconsider that short-sighted decision. Although the NHS in Wales faces many challenges and competing demands for future investment, I will continue to press the new Welsh Government to participate in the ISE. Waiting until the ISE concludes risks no babies being screened until the National Screening Committee makes its formal recommendations in 2030—four years more of missed opportunities for Welsh babies.

Given the clear benefits of cross-border working across our Union, could the Minister outline what conversations she and her colleagues have had with their Welsh Government counterparts about the ISE and how Wales could participate in it? If she cannot answer tonight, I would be grateful if she would write to me.

To conclude, although the effects of SMA can be dramatic, screening and early treatment offer us the opportunity to transform these children’s lives. We need to ensure that all babies across every nation of the UK receive blood spot screening for SMA, so that no child’s future is determined by their postcode.

[David Mundell (in the Chair)]

Our final Back-Bench contribution will be from Chris Vince.

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[Mrs Hodgson]

I thank my hon. Friend for his passionate intervention. I say again that it does not fall on deaf ears.

The right hon. Member for Melton and Syston (Edward Argar) asked what steps can be taken to speed up the process. We will be working at pace. Again, I will be paying very close personal attention to that.

Let me refer to a few other comments that I have not touched on yet. My hon. Friend the Member for Sunderland Central asked about the unscreened community being used as a control or comparison group. I want to be very clear that those not included in the trial are not being used as a control or comparison group. Labs taking part in the study start to screen newborns for SMA in phases, and the labs act as the control before they start to screen.

My hon. Friend the Member for Blaydon and Consett (Liz Twist) asked when coverage will reach the whole of England. Again, this is about the six labs that are not covered. The Secretary of State is actively considering that, which is why I said that we are listening and working at pace.

My hon. Friend the Member for Newport West and Isl—[Laughter.] She asked whether we had spoken to Wales. It is a good job they do not send me to speak to Wales, because I cannot pronounce all the names! We work in close collaboration with the devolved Governments, who were all included in discussions about setting up the ISE.

The shadow Secretary of State, the right hon. Member for Daventry, asked a number of detailed questions. I will endeavour to write to him on those points. We have chosen areas with labs with the equipment needed to do the analysis, which is why I will write to my hon. Friend the Member for Portsmouth North about the generation study.

We must move forward with compassion for families, rigour in the evidence and determination to give every child the best possible start in life, and that is what will do. I thank all hon. Members for their excellent speeches and for the challenge about the pace and coverage of the clinical trial. I hear them all and feel their pain deeply. The House should believe me when I say that I asked all those questions while preparing for the debate. I commit to them all that I will continue to ask those questions on their behalf. Where we can go further and faster safely, I will push for that to be the case. This debate has played a very important part in that push. I thank Jesy, all the petitioners and all hon. Members for ensuring that this debate took place today.

[David Mundell (in the Chair)]

Mr Atkinson, you have one minute to wind up.