Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what his timetable is for releasing funds to support the UK National Screening Committee’s review of newborn screening for Spinal Muscular Atrophy.

Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)

Following the 2023 UK National Screening Committee (UK NSC) recommendation for an in-service evaluation (ISE) of spinal muscular atrophy (SMA), partnership planning between the Department, NHS England, the National Institute for Health and Care Research (NIHR), and other stakeholders has been in progress to implement an ISE in the National Health Service.

An ISE is a programme of work to develop high quality evidence in live NHS services. Successfully implementing the ISE will require funding, however, departmental budgets, including for the NHS beyond 2025/26, will be set through Phase 2 of the Spending Review, which will conclude and be published in June 2025.

The findings of the ISE, which will run over a few years, will provide the UK NSC with real-world evidence on feasibility, acceptability, and clinical and cost-effectiveness, as well as longer term health outcomes. Along with an SMA screening modelling study, these will inform a UK NSC recommendation on whether SMA should be added to the newborn blood spot screening programme.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what the planned timetable is for the UK National Screening Committee's review of its advice on screening for spinal muscular atrophy.

Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)

Following the 2023 UK National Screening Committee (UK NSC) recommendation for an in-service evaluation (ISE) of spinal muscular atrophy (SMA), partnership planning between the Department, NHS England, the National Institute for Health and Care Research (NIHR), and other stakeholders has been in progress to implement an ISE in the National Health Service.

An ISE is a programme of work to develop high quality evidence in live NHS services. Successfully implementing the ISE will require funding, however, departmental budgets, including for the NHS beyond 2025/26, will be set through Phase 2 of the Spending Review, which will conclude and be published in June 2025.

The findings of the ISE, which will run over a few years, will provide the UK NSC with real-world evidence on feasibility, acceptability, and clinical and cost-effectiveness, as well as longer term health outcomes. Along with an SMA screening modelling study, these will inform a UK NSC recommendation on whether SMA should be added to the newborn blood spot screening programme.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what discussions he has had with the National Institute for Health and Care Research on expediting the publication of its research brief to inform the UK National Screening Committee’s in-service evaluation of newborn screening for spinal muscular atrophy.

Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)

My Rt Hon. Friend, the Secretary of State for Health and Social Care is aware of the plans being developed for the National Institute for Health and Care Research’s research call and the in-service evaluation. However, its roll out and timeline will not be confirmed until after the conclusion of the 2025 Spending Review.

Found: in the course of debate on amendments to the clause/schedule (Standing Order No. 68) Chairs: Peter Dowd

Found: Not called_NC25 Peter Dowd Paula Barker Richard Burgon Ian Byrne Ellie Chowns Neil Duncan-Jordan