On Wednesday 19th February, Bob Dorris MSP, Chair of the Cross-Party Group in the Scottish Parliament on Rare, Genetic and Undiagnosed Conditions asked the Scottish Government what its position was on using the blood spot test given to newborn babies to screen for SMA to support early diagnosis and effective treatment of babies born with the condition.
Jenni Minto, Minister for Public Health and Women’s Health responded that;
“Scotland’s screening policy relies on recommendations made by the UK National Screening Committee, an independent scientific body that provides advice on screening policy to all four United Kingdom nations. To date, the National Screening Committee has not recommended spinal muscular atrophy, or SMA, screening through the existing blood spot test. However, I am aware that the committee is currently considering the matter. I hope that Mr Doris can rest assured that we are following developments closely, and that we, along with the organisations that are responsible for screening, are already considering how to implement SMA screening as quickly and effectively as possible should a recommendation be made”
Bob Dorris continued;
“Had my constituent, Baby Grace, been screened for SMA at birth, early treatment would have been transformational. Delayed diagnosis and treatment drastically reduce the beneficial impact of treatment. Consequently, Grace will now have substantial lifelong care needs. It did not have to be that way. The cabinet secretary previously told me that the focus is to plan for SMA screening so that we can act when the time is right. Given that the benefits of screening for SMA are both transformational and crystal clear, and that it appears to be a case of when and not if that will happen—despite the sluggish pace of the UK National Screening Committee, which I am dissatisfied with—when can we just get on with screening and change the lives of babies like my constituent young Grace?”
Jenni Minto continued;
“My heart goes out to Baby Grace and her family, and to other families in a similar situation. I absolutely understand the benefits of early diagnosis. I take on board the points that Mr Doris has made, and I know that he has met with the cabinet secretary, who would be happy—as would I—to meet with him again. I am content to write to the NSC to understand the timeline for when its decisions will be made, which I appreciate is cold comfort to families who are already in this situation. I can confirm that all four UK chief medical officers are aware of the NSC’s plans and rationale for the review. I emphasise again that we are moving towards a way forward for implementation if the NSC makes that determination.”
Jackie Baillie MSP welcomed the minister’s comments, but added that “rather than following developments and asking for timelines, what engagement will ministers have with the UK National Screening Committee to ensure that SMA screening is agreed?”
Jenni Minto responded;
“That is an engagement that we are continuing to have, both through the cabinet secretary and through me.”
Following on from the exchange at Holyrood yesterday, CEO Giles Lomax commented “I’m pleased to see that screening for SMA was discussed in the chamber today, this is the second time in the last 12 months that the question around newborn screening has been raised. I have subsequently written to Jenni Minto to request a face to face meeting to discuss what preparatory plans the Scottish government have put in place should a positive NSC recomdation come to light”
