Spinal Muscular Atrophy: Newborn Screening Test

Ruth Jones Excerpts

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.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)]

It is a pleasure to serve under your chairmanship, Mr Mundell. I thank my constituency neighbour, my hon. Friend the Member for Sunderland Central (Lewis Atkinson), for opening the debate on behalf of the Petitions Committee. It is very heartening to see so many Members in the Chamber and so many families in the Public Gallery, all united by a shared concern for children and families affected by spinal muscular atrophy.

SMA is a cruel and devastating condition. It can steal from a family the carefree future they had imagined for their child. It can take away a child’s mobility and, far too often, it can take away a child’s life far too soon. I pay tribute to children living with SMA for their courage, to their families for their strength, and to campaigners for working tirelessly to ensure that their voices are heard. Their message to us is clear: where there is a chance to identify affected babies earlier, and where treatment may have its greatest effect, we must pursue that chance with urgency, care and resolve.

I particularly thank Jesy Nelson, who is in the Public Gallery and is very welcome. She is so brave to share her experience of the condition, which affects her twins, Ocean and Story. She has given a public voice to all those going through a similar experience. This petition has rightly gained significant support—150,000 signatures —in such a short space of time. I am so pleased that we can take the time to have this debate and raise awareness of SMA.

I assure everyone that this conversation will not stop today. I will continue to listen to the voices of those speaking for children with SMA. Tomorrow, for example, I am due to meet with members of Muscular Dystrophy UK to continue this very conversation. I know that many families and advocates feel that the Government have moved too slowly towards a decision on screening for SMA. I understand that frustration, but decisions about national screening programmes must be made with great care.

We must be confident that screening will do more good than harm, that it can be delivered safely and fairly, and that we are making the best possible use of NHS resources for the babies and families who depend on them. There remain many unanswered questions about the benefits and practical delivery of screening for SMA. That matters because the answer we seek must be robust enough to support a lasting national programme.

We were pleased that the National Institute for Health and Care Excellence published final guidance earlier this year accepting both nusinersen and risdiplam as treatments that could be routinely offered to SMA patients for whom gene therapy has not worked. The finding that those treatments can improve survival rates and slow the progression of disease is welcome and significant. For families living with SMA, even slowing that progression can mean more time, more independence, more moments together and more hope.

[Ruth Jones]

The Minister says that screening must be safe and fair. We know the benefits of screening—the people in the Public Gallery have articulated it so clearly. The benefits are undeniable, so is it fair that the whole of Wales and a third of England does not have such screening?

[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.

[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.

[Ruth Jones]

I appreciate what the Minister says about getting evaluation right, but Ukraine can install such an evaluation across the whole country during a war, and Ireland is doing it, too, so why aren’t we?

[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.