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Spinal Muscular Atrophy: Newborn Screening Test — [David Mundell in the Chair]
22 June 2026
Lead MP
Lewis Atkinson
Responding Minister
Sharon Hodgson
Tags
NHS
Word Count: 12579
Other Contributors: 16
At a Glance
Lewis Atkinson raised concerns about spinal muscular atrophy: newborn screening test — [david mundell in the chair] in Westminster Hall. A government minister responded.
Key Requests to Government:
Atkinson asks the Government to push for quicker conclusions from the in-service evaluation than the planned 18 months and to provide interim safeguards against delayed or missed diagnosis. He also questions whether leaving some babies unscreened when tests exist raises ethical concerns, and urges the Minister to ensure that every baby is screened for SMA as quickly as possible.
How the Debate Unfolded
MPs spoke in turn to share their views and ask questions. Here's what each person said:
Lead Contributor
Opened the debate
Lewis Atkinson is concerned about the delayed diagnosis of babies born with spinal muscular atrophy type 1 due to the lack of universal newborn screening. He mentions that around 48 babies are diagnosed with SMA each year in the UK, and approximately 35 would be screened under the current evaluation plan while 13 would not. This disparity is described as a postcode lottery which can affect whether children walk, breathe unaided or feed normally for life. The petition received 149,692 signatures, including from 225 of his constituents.
Alison Bennett
Con
Great Yarmouth
Stressed the importance of newborn screening for early diagnosis and treatment of SMA, citing historical mortality rates and recent medical advances. Highlighted inconsistencies in current rollout across different regions and called for broader access to ensure equitable care.
Amanda Martin
Con
Portsmouth South
Expressed alarm that Portsmouth will not be included in SMA screening roll-out this October, and has written to the integrated care board seeking answers on why babies born there would miss early diagnosis opportunities. Questions why babies born in Portsmouth do not have access to screening, suggesting that they are less valued compared to those in other areas with screening services. Amanda Martin thanks the Minister and points out that Portsmouth hospital is already able to test for SMA as part of a generation study, questioning why this capability has not been rolled out across the board.
Harlow
Christopher Vince highlights the importance of newborn screening for SMA and calls on the Government to expedite the roll-out process. He notes that early treatment can significantly reduce the impact of SMA, and stresses the need to avoid a postcode lottery in accessing this crucial service.
Edward Argar
Con
Charnwood
Edward Argar shared the story of his constituent Charlotte and her son Harvey, who passed away from SMA Type 1. He highlighted that only 72% of babies in England will be included in the current screening programme, leaving many unscreened and at risk. He called for quicker action to include SMA in the NHS newborn heel-prick test.
James Naish
Lab
Bolton West
A constituent with experience of SMA highlighted the lack of detail about how long the in-service evaluation will take, asking for more clarity to provide a sense of forward momentum.
Jim Shannon
DUP
Strangford
Committed to the debate and emphasised the need for a UK-wide purchasing power for heel-prick testing kits, highlighting that early diagnosis through gene therapy can save lives. Emphasised the need for immediate extension of evaluation framework to Northern Ireland to ensure children's chances of walking, breathing and surviving are not affected by location.
Liz Twist
Lab
Blaydon
Ms Twist highlighted the need for preventive action to protect children from spinal muscular atrophy (SMA), emphasizing that early diagnosis and treatment can significantly improve outcomes. She discussed two cases, Freddie and Louis, who benefited from nusinersen and Zolgensma treatments respectively, illustrating the transformative impact of timely intervention.
Luke Taylor
Con
Central Suffolk and North Ipswich
Intervenes to share a constituent's experience where a child diagnosed with SMA type 1 at five months old is now severely limited in mobility. Urges the Government to fast-track roll-out of testing programmes.
Discussed the cost-effectiveness of full coverage across England, Wales, and Northern Ireland, suggesting it could be achieved for £3.1 million to ensure all babies are tested for SMA.
Carshalton and Wallington
Paid tribute to campaigners and highlighted the case of Charlie from her constituency who is now living life in a wheelchair due to late diagnosis, advocating for earlier screening at birth. Ms Wilson questioned why the Government did not include every testing centre in England for the SMA screening trial, suggesting that excluding certain areas could lead to unfair outcomes and a lack of comprehensive data.
Peter Dowd
Lab
Bootle
Welcomed the debate introduction and underlined the urgency of rolling out a comprehensive programme faster due to the high mortality rate among untreated SMA patients. Peter Dowd cites an article from The Lancet recommending that expert opinion and international evidence should guide NSC decisions, urging the Minister to take a more proactive approach to avoid risking children's lives.
Robbie Moore
Con
Keighley
Robbie Moore thanked the hon. Member for Sunderland Central and expressed gratitude to everyone who signed the petition, particularly lead petitioner Jesy Nelson. He highlighted that spinal muscular atrophy is a rare neuromuscular genetic condition affecting muscle weakness, movement problems, and difficulties with breathing and swallowing. Moore mentioned his constituent Nasser Iqbal whose daughter was diagnosed with SMA type 1 after three months of birth. He stressed the importance of early screening as it has been shown to significantly improve health outcomes for babies diagnosed before symptoms appear. Robbie Moore is pleased with recent announcements but expresses concern that his constituents in West Yorkshire are not included, urging the Minister to meet or write back on how these areas can be included in future screening programmes.
Ruth Jones
Lab
Swansea East
SMA is a rare genetic condition that can be life-threatening, but early detection through newborn screening could improve patient outcomes and save taxpayers' money. The cost of treating SMA without presymptomatic treatment is estimated at £75,000 annually per child. Ruth Jones urges all UK constituent nations to follow Scotland's lead in rolling out universal screening for SMA. The benefits of screening for spinal muscular atrophy are undeniable, so Ruth Jones questions why Wales and parts of England do not have access to such testing. Ruth Jones again questions why the UK cannot implement such screening programs as effectively as Ukraine and Ireland during their respective challenging circumstances.
Sadik Al-Hassan expressed concern about the postcode lottery of current screening plans, noting that many newborns in his constituency will miss out due to their hospital's exclusion. He stressed the importance of early diagnosis and treatment for SMA, questioning why prevention would not be acted upon without delay.
Sorcha Eastwood
Con
Lagan Valley
Welcomes the debate and criticises the delay in implementing newborn screening for spinal muscular atrophy. Emphasises that families feel their voices are not heard regarding various childhood conditions, using SMA as an example. Shares a message from Michaela Hollywood about disability advocacy and highlights the proven benefits of early detection.
Stuart Andrew
Con
Pudsey
Acknowledged Jesy Nelson's efforts in raising awareness of spinal muscular atrophy and thanked charities like Spinal Muscular Atrophy UK for their support. Emphasized the importance of newborn screening, noting that three treatments are now available on the NHS to halt SMA progression but stressed the need for early detection. Asked how many babies and children are currently receiving these drugs and requested clarification on why certain regions were chosen for the initial trial.
Government Response
Sharon Hodgson
Government Response
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. SMA is a cruel and devastating condition that can take away a child's mobility and life too soon. The petition has gained significant support—150,000 signatures—in such a short space of time. I assure everyone that this conversation will not stop today; decisions about national screening programmes must be made with great care to ensure they do more good than harm. We have worked with the National Institute for Health and Care Research and NHS England to establish an in-service evaluation to gather evidence, answer difficult questions and fill gaps. The previous Secretary of State met Jesy Nelson, along with Giles Lomax from SMA UK, and I announced that the planned start date of January 2027 would be brought forward by three months to October 2026. From that date, babies will begin to be screened for SMA, and we will collect essential information needed to help many more children in the years ahead. We are working at pace and listening closely to all concerns.
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About Westminster Hall Debates
Westminster Hall debates are a chance for MPs to raise important issues affecting their constituents and get a response from a government minister. Unlike Prime Minister's Questions, these debates are more in-depth and collaborative. The MP who secured the debate speaks first, other MPs can contribute, and a minister responds with the government's position.