Spinal Muscular Atrophy: Newborn Screening Test

Chris Vince Excerpts

Monday 22nd June 2026 Westminster Hall

[Chris Vince (Harlow) (Lab/Co-op)]

It is a pleasure to serve under your chairship, Mr Mundell. I thank my hon. Friend the Member for Sunderland Central (Lewis Atkinson) for opening and framing the debate. I also thank the right hon. Member for Melton and Syston (Edward Argar) for sharing Harvey’s story with us. It was really powerful, and I hope that Harvey’s memory will live on for us through this debate.

One of the reasons I want to speak in this debate is that I am a new father, who celebrated his first Father’s Day yesterday, and I know how important it is for all new parents to know that their baby is healthy. I am very proud that so many of my constituents in Harlow, which borders Broxbourne, feel so passionately about this issue and signed the petition. Spinal Muscular Atrophy UK and Muscular Dystrophy UK have asked for SMA to be included in the newborn screening programme, and I thank those charities for their work. As Members will know, this issue came to the fore at the beginning of this year when Jesy Nelson’s twin daughters were diagnosed with SMA, and I thank the then Health Secretary for meeting her. The petition was launched subsequently and led to this debate.

I recognise that the Government have started to roll out an in-service evaluation in NHS screening services in response to this petition, but I add my voice to those of the campaigners, the Members who have spoken in this debate and the many Harlow residents who signed the petition to urge the Government to go further and faster. The quoted 18 months for evaluation is just too long, and so many babies will not be diagnosed because of it.

As my hon. Friend the Member for Sunderland Central said, the sooner this treatment is administered, the less these young people will be impacted. I also welcome his comments about screening not becoming a postcode lottery. Both those points are really important. I hope the Minister heard the passionate words of Members from across the House, in particular those of my hon. Friend the Member for Portsmouth North (Amanda Martin), who is obviously hugely passionate that her constituents are not left out—I would feel the same if it was my constituency.

Having worked with children, particularly young people with lifelong disabilities and their parents, for pretty much all my life before I came to this place, I know that the trauma they face never really goes away. The more we can do to support them and their children, the better.