Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the impact of average (a) diagnosis and (b) treatment waiting times on people affected by spinal muscular atrophy.

NHS England has made no specific assessment of the impact of average diagnosis and treatment waiting times on people affected by spinal muscular atrophy (SMA). However, since the 2018 recommendation not to introduce newborn screening for SMA, there have been significant developments in the treatment of SMA, including the approval by the National Institute for Health and Care Excellence and the Scottish Intercollegiate Guidelines Network of several drugs to treat SMA in newborns. Evidence presented to the UK National Screening Committee (UK NSC) in June provided reasonable grounds for more formal exploration of a United Kingdom newborn screening programme for SMA. The health impacts of time to diagnosis will be considered as part of the UK NSCs modelling work on SMA. The UK NSC are currently in discussions on how best to take this forward.