Spinal Muscular Atrophy: Newborn Screening Test

Debate between Ruth Jones and David Mundell

Monday 22nd June 2026 Westminster Hall

[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.