2nd April 2026
The Postcode Lottery of Life: Why Newborn Screening for SMA Can’t Wait and new resources to support your role.
With Spinal Muscular Atrophy (SMA) making recent news headlines, we share this Voices blog by Portia Thorman, Head of Advocacy at SMA UK. Portia describes the vital role of health visitors in recognising SMA and the latest updates on new resources to support them in their role.
Portia Thorman, Head of Advocacy at SMA UK
Health visitors and their teams are the eyes and ears of our communities. They are often the first professional a parent/carer turns to with that quiet, nagging worry: “They just seem a bit floppy,” or “They aren’t quite pushing up like their sister did.” At SMA UK, we hear these stories all the time.
On 23 March 2026, following years of campaigning and in a landmark move for the UK, Scotland officially added Spinal Muscular Atrophy (SMA) to its newborn screening programme. As part of a new evaluation, every baby born in Scotland is now offered a screen for SMA via the routine newborn blood spot test.
However, across England, Wales and Northern Ireland, the delay remains devastating. By the time a clinician sees those first symptoms, the damage is already done. Motor neurons are already dying, and they cannot be replaced. Treatment for SMA stops disease progression in its tracks, but waiting for symptoms means we are often too late to prevent a lifetime of complex needs. Without newborn screening, these infants face the risk of permanent, irreversible muscle atrophy – potentially losing the ability to ever sit, walk, or even breathe and swallow independently. We aren’t just missing a diagnosis, we are missing the window to save a child’s future.
The Unfair Burden on the Front Line
For everyone living with SMA, the current situation feels fundamentally wrong. We have three NHS-funded, disease-modifying treatments that are nothing short of miraculous. However, the efficacy of these treatments depends entirely on one factor: time.
SMA is a progressive condition where motor neurons (the nerve cells that tell muscles to move) degenerate and die. Once they are gone, they cannot be replaced, and the physical skills lost cannot be regained. Without newborn screening, the diagnostic odyssey puts an immense, unfair pressure on frontline clinicians like health visitors.
We are essentially asking clinicians to be the human screening test. It is a heavy burden to place on anyone’s shoulders, expecting them to spot subtle signs of a rare disease in busy settings, knowing that if it’s missed, that baby or child may face a lifetime of complex needs, permanent disability or early death. A disability that could have been avoided with earlier intervention. A child’s ability to walk, swallow, breathe, or their life expectancy shouldn’t depend on a postcode lottery.
New Support is on the Way
Until we achieve universal screening across the whole of the UK, clinical vigilance remains the only safety net that these families have. We know that watching and waiting is not an option when every day counts, but we also recognise that identifying a rare condition like SMA requires specific expertise and confidence.
To support you in this vital role, new resources will soon be available to help frontline clinicians with the early detection of SMA. SMA UK, in close collaboration with the iHV, are producing a new Good Practice Point (GPP) and new online learning which will be available to all members in iHV LEARN.
These resources are designed to empower you with the tools to ‘SPOT SMA’ early, navigate the referral pathway with urgency, and support families through the diagnostic process and beyond. By bridging the gap between clinical observation and rapid treatment, we can ensure that even without a national screening programme in England, fewer children slip through the net.
At SMA UK, we will continue to fight for newborn screening in England to lift this diagnostic burden off your shoulders once and for all. Until then, we are committed to providing you with the best possible training to change the trajectory of these children’s lives.
Join us at an iHV Insights Xtra webinar on 18 June to learn more about SMA and the new resources to support your practice – this is open to both iHV members and non-members.
