Calls for Wales to follow England with SMA newborn screening

Emily Price 

The Welsh Government has been urged to introduce routine newborn screening for Spinal Muscular Atrophy (SMA), as England prepares to introduce testing following a high-profile campaign by pop star Jesy Nelson.

The Conservatives in the Senedd have called on Welsh ministers to match plans in England after parents raised concerns that babies in Wales could miss out on vital screening for the rare genetic disease that damages nerve cells in the spinal cord.

Every baby born in Scotland will also be screened for SMA as part of a new two-year trial.

The campaign to screen babies for the condition was led by former Little Mix star Jesy Nelson who revealed in January that her twin daughters had been diagnosed with SMA Type 1.

The condition begins in babies under six months old and can cause muscle weakness, difficulty sitting up, crawling or walking, problems breathing or swallowing, as well as bone and joint issues.

Since the twins’ diagnosis, Nelson has led calls to add SMA to the newborn blood spot screening programme.

This will allow treatment to begin before symptoms emerge, potentially preserving vital motor neurons and preventing permanent, irreversible nerve and muscle damage.

There is currently no known cure for SMA, but the condition can be managed with medicines and treatments.

The UK Department of Health announced in July that the national newborn screening programme for SMA will be rolled out across England from the end of this year.

However, the testing will not be introduced in Wales, with the Welsh Government saying it has followed guidance from the UK National Screening Committee (NSC), which does not recommend routine newborn screening for SMA.

Ministers say the are currently awaiting further advice from the NSC.

Welsh Conservative Shadow Minister for Health and Social Care, Natasha Asghar, has called on the Welsh Government to “prepare to act swiftly” following the advice.

She said: “No child in Wales should miss out on the opportunity for earlier diagnosis and life-changing treatment simply because of where they are born.

“The stories of families living with SMA are heartbreaking and it is deeply concerning that children in Wales are being left behind.

“The evidence is clear that early diagnosis can make a profound difference to treatment outcomes, helping children receive care before their condition deteriorates.

“The Welsh Government must work urgently with clinicians and the UK National Screening Committee to ensure Welsh families have the same opportunities as those elsewhere in the United Kingdom.

“We cannot allow a postcode lottery to determine access to potentially life-changing healthcare.

“Welsh Ministers must be prepared to act swiftly if the evidence supports newborn screening and ensure children in Wales have parity of access to the best available treatment and care.”

A Welsh Government spokesperson said: “Spinal Muscular Atrophy (SMA) is a devastating diagnosis for sufferers and their families. We encourage any parent or carer with concerns about their child’s development to speak to their GP or health visitor so that appropriate advice and support can be provided promptly.

“We follow advice from the UK National Screening Committee (UK NSC), which does not currently recommend routine newborn screening to detect SMA.

“The in-service evaluation in England will help inform a recommendation from the UK NSC as to whether screening for SMA should be included as part of the newborn blood spot screening programmes across the UK.  If the advice changes, we will of course consider any future recommendations from the committee.

“Improvements to infrastructure within the Newborn Bloodspot Screening Wales Programme are required before additional conditions can be safely introduced.

“Therefore, Wales is currently unable to participate in the SMA ISE. However, we are working closely with NHS partners to establish the requirements for modernising and futureproofing newborn screening infrastructure in Wales, to ensure the programme is well placed to respond to future screening developments and recommendations.

“Babies and young children in Wales receive regular developmental checks through the Healthy Child Wales Programme, with referral for further assessment where concerns are identified.”

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