The decision follows a review by the UK National Screening Committee (UK NSC), which concluded that MLD does not currently meet the criteria for inclusion in the national newborn blood spot screening programme. The Committee cited concerns around screening evidence, test thresholds and cost-effectiveness, despite acknowledging the severity of the condition and the importance of early diagnosis.

Carla Lockhart MP has been to the fore on this issue, alongside other MPs, raising concerns in Parliament and calling on Ministers to engage directly with affected families to hear first-hand the devastating and life-limiting impact of MLD. She has been engaged on this issue since 2024, working with families and campaigners to press the case for inclusion in the newborn heel-prick screening programme. Despite a clear commitment given by a Minister on the floor of the House, a meeting with affected families has yet to take place.

Speaking on the issue, Carla Lockhart MP said:

“I am bitterly disappointed by this decision, but I want to be absolutely clear: I will not be deterred. I will continue to fight for change in this regard.

Metachromatic Leukodystrophy is a rare but devastating genetic condition that leads to rapid neurological decline in young children. Where it is identified before symptoms appear, treatment options are available. Without newborn screening, diagnosis almost always comes too late, and families are left facing irreversible loss.

I have been to the fore on this issue, alongside colleagues from across Parliament, and have consistently called for Ministers to meet with affected families to hear directly the reality of what this decision means. While a commitment was given by a Minister on the floor of the House to meet with families, that promise has not yet been honoured. I am deeply unhappy about that, and I have now escalated this matter directly to the Secretary of State.

Sadly, for little Teddy from Upper Bann, this decision comes too late. But the children who will be born after him deserve so much better. No parent should ever be left knowing that a simple heel-prick test could have changed the course of their child’s life.

I have already issued further correspondence to the Minister and will continue to press the Government, the National Screening Committee and the Secretary of State until meaningful progress is made. I remain fully committed to seeing change in this area and to standing with families affected by MLD every step of the way.”