Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to monitor the National Screening Committee’s progress on reviewing the case for including Spinal Muscular Atrophy in the NHS newborn screening programme; and what his timetable is for making a decision on that matter.

The review of whether to screen for spinal muscular atrophy (SMA) is under active consideration. At the June UK National Screening Committee (UK NSC) meeting this was tabled for discussion. Minutes of this meeting are available at the following link:

https://www.gov.uk/government/publications/uk-nsc-meeting-june-2023/uk-nsc-minutes-june-2023

The UK NSC supported the proposal to commission a cost effectiveness modelling study and to start planning a high-quality in-service evaluation to support a UK NSC recommendation. Due to these new decisions made at the June meeting, no timetable has yet been developed.

As per the UK NSC’s published process, the committee will hold a three-month public consultation on SMA inviting stakeholders and members of the public to comment and submit further evidence for consideration. It will keep the public abreast of developments via its blogs and ongoing stakeholder engagement activities.