Oxfordshire MPs Warn of Postcode Lottery in Life Saving Newborn Screening

Oxfordshire’s Liberal Democrat MPs have written to Wes Streeting raising urgent concerns about unequal access to newborn screening for spinal muscular atrophy (SMA), warning that current plans risk creating a postcode lottery for babies across the UK.

In a joint letter, Freddie van Mierlo, Layla Moran, Olly Glover, Charlie Maynard and Calum Miller highlight that families in Oxfordshire could face significant delays in accessing screening under the current limited rollout of the in service evaluation programme.

Spinal muscular atrophy is a rare but serious genetic condition affecting around 70 babies and young children in the UK each year. Early diagnosis is critical, with a growing range of treatments now available that can dramatically improve outcomes if delivered quickly.

The MPs warn that restricting screening to selected areas could lead to stark inequalities, where a child’s life chances depend on where they are born. Babies in areas without access to early screening may face significantly worse outcomes than those diagnosed and treated promptly.

The letter raises concerns that the current approach, guided by the UK National Screening Committee, could delay full national rollout by several years, despite clear evidence that early intervention is key.

The MPs are calling on the Government to act to ensure equitable access to screening across the country, arguing that a piecemeal approach risks avoidable harm and long term pressure on NHS services.

The intervention follows growing public attention on the issue, including a high profile campaign led by Jesy Nelson calling for nationwide SMA screening.

Dr Sithara Ramdas, Consultant Paediatric Neurologist at the Oxford Muscle Service, said:

“It is a profound injustice that local families cannot access this screening and therefore cannot benefit from early treatment for their children. Early diagnosis can make a life-changing difference, and delays risk worse outcomes that could otherwise be avoided. This inequity persists despite Thames Valley having undertaken the SMA NBS pilot programme in 2022. A proposal to expand SMA NBS in Thames Valley and other sites currently not covered by the in-service evaluation, using external funding, has not been accepted by the UK Newborn Screening Committee, which is deeply disappointing. Growing awareness of SMA, including through Jesy Nelson’s personal story, shows how important it is that access to screening is fair and available to all families, regardless of where they live..”

Freddie van Mierlo MP said:

“Local families in Oxfordshire should not be left waiting years for access to screening that could transform their children’s lives.

Less than a handful of babies may be born a year in Oxfordshire with the condition, yet for those babies early detection could mean the difference between walking and a life in a wheelchair.

It cannot be right that a child’s chances depend on where they are born. As a parent there must be nothing worse than knowing something could have been done and it wasn't. 

Other countries in Europe, including Ukraine already have country-wide screening. We need to see urgent action to ensure fair access to screening across the whole country.”