Oral Answers to Questions

Debate between Josh Dean and Ashley Dalton

Tuesday 22nd July 2025 Commons Chamber

[Ashley Dalton]

We are already delivering. The hon. Lady is absolutely right to identify that a number of plans are being brought forward. We take this matter very seriously, and we want to ensure that we get it right. We plan: we plan so that we perform effectively, and we plan for success. The national cancer plan will be coming later this year, and I am sure that we will be able to outline a timetable for all other plans. I assure her that planning is not doing nothing; planning is making sure that we get this right and that we deliver.

[Josh Dean (Hertford and Stortford) (Lab)]

9. What steps he is taking to increase metachromatic leukodystrophy screening provision for infants.

[The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)]

I thank my hon. Friend for raising this issue and congratulate his constituent David Kiddie on the 190-mile walk he completed earlier this year to raise awareness and funds for those with MLD and their families. The Government are committed to listening to those with MLD and their families and acting with compassion and care to support them. The UK National Screening Committee, which advises the Government on all screening matters, is consulting on the outcomes of an evidence review looking at whether to screen for MLD.

[Josh Dean]

In 2024, two-year-old Lily Stock was diagnosed with metachromatic leukodystrophy, a rare and progressive disease that will, in her family’s words, “slowly take Lily away”. Libmeldy, a lifesaving gene therapy, is available through the NHS, but I understand that it must be administered before symptoms develop. Sadly, that means it is too late for Lily to benefit from the treatment. Emily and Sean, Lily’s parents, are campaigning for MLD screening to be added to the heel-prick test on newborns, so that MLD can be identified early and treated effectively and no family will have to go through this devastating experience. Will the Minister and her officials look into adding MLD screening to the heel-prick test, and will she and the Secretary of State join me to meet Lily’s family and hear their story at first hand?

[Ashley Dalton]

I thank my hon. Friend for raising this matter. Lily’s story really lays bare the heartbreak that rare diseases can bring and the vital role that early diagnosis can play. I am happy to meet my hon. Friend and Lily’s family. May I suggest that we meet when the UK National Screening Committee has completed its review, so that the Government have received advice on this important matter? We can then discuss that advice together.