Families slam decision not to expand newborn blood test

The extended test could detect a rare condition in babies and help them get treatment earlier

- DANIEL HALL

Andy Lake and wife Tracy with children Aubrey, 3 and Ellis, 9 at home in Wallsend with their pet dog Dora

(SIMON GREENER)

NORTH East families have slammed the decision to reject calls to introduce checks for a rare genetic condition in newborn blood spot test screenings.

The NHS uses the newborn blood spot test (formerly known as the heel prick test) to check if babies have any of 10 rare conditions, some of which can be life-threatening, such as cystic fibrosis and sickle cell disease.

However, there are more wide-ranging tests in Europe, with checks for 48 diseases and conditions in Italy, 39 in Norway, and 36 in Poland.

In the UK, the test does not screen for metachromatic leukodystrophy (MLD); a genetic condition which affects the white matter in the brain and causes a progressive loss of physical, and later, mental skills.

The UK National Screening Committee (NSC) published its decision to advise against screening for MLD on Thursday, saying that this is because it is not currently known if the screening test is accurate, nor that early treatment as a result of screening improves long-term health outcomes.

Ally Wallace, from Shilbottle in Northumberland, has campaigned for MLD screening since her two daughters were diagnosed with the condition in 2022.

Nala, now six, was found to have the condition at a stage too advanced for treatment, and has lost her ability to walk and talk.