Babies across the UK face delays in treatment for the debilitating genetic condition spinal muscular atrophy because no newborn screening programme exists. I recently met two families impacted by that who want to know why the majority of European countries screen for SMA, yet we do not. I have been campaigning for that screening for some time. It makes a real difference to the lives of newborn babies.

Given that it now appears likely that there will be a UK pilot for SMA screening, does the First Minister agree that Scotland should be included? Will he meet me to discuss what work is being undertaken in Scotland to prepare for such a pilot, including, as I think he would welcome, identifying potential partnership funds to deliver it?

The First Minister:

I recognise the urgency that families in Scotland that are affected by spinal muscular atrophy feel about the issue. It can be absolutely devastating, and I share the desire for any action that could prevent it.

The UK National Screening Committee is very much in the best position to evaluate all the evidence, and I welcome the in-service evaluation that NHS England is carrying out. I hope that that will bring us closer to a decision. Discussions are on-going about the potential for a Scotland-specific study or for Scotland to participate in the in-service evaluation. However, a number of factors must be worked through before a final decision can be reached. I am always happy, as is the Cabinet Secretary for NHS Recovery, Health and Social Care, to meet Bob Doris to discuss this very important issue.

The Presiding Officer:

That concludes First Minister’s question time. The next item of business is a members’ business debate in the name of Douglas Ross. There will be a short suspension to allow those who wish to leave the chamber and public gallery to do so.

12:47 Meeting suspended.

12:48 On resuming—