Hansard

Our next new petition is PE2067, on improving data on young people who are affected by conditions causing sudden cardiac death. The petition, which was lodged by Sharon Duncan, calls on the Scottish Parliament to urge the Scottish Government to commission research to establish how many people aged 14 to 35 are affected by conditions that cause young sudden cardiac death; clarify the number of people who die annually in Scotland from those conditions; and set up a pilot study to establish whether voluntary screening can reduce deaths. Members will be aware that the petition has been lodged by the mother of parliamentary staffer David Hill, who tragically passed away while playing in an inter-parliamentary rugby match two years ago almost to the day, on 19 March 2022. I understand that members of the family have joined us in the public gallery, and we extend our condolences and a warm welcome to them. As the petition notes, there is currently no screening programme for young people for conditions that put them at risk of sudden cardiac death. The SPICe briefing that we have received notes that there are difficulties in reaching agreement on the number of young people who are affected by sudden cardiac death. Those include the way in which deaths are classified and the fact that research focuses on athletes rather than the general population. In responding to the asks of the petition, the Minister for Public Health and Women’s Health notes the Government funding that has been provided to the west of Scotland inherited cardiac conditions service and the network for inherited cardiac conditions to deliver a sudden cardiac death project, with a focus on improving clinical pathways for families and enhancing data quality. The minister has also made inquiries to the UK National Screening Committee about plans to review its position on population screening for conditions that are associated with sudden cardiac death in the young. We have received a submission from the petitioner, Ms Duncan, emphasising the importance of understanding the incidence of those conditions to developing treatment pathways. Ms Duncan also seeks clarity on the coding that is used to inform data on incidence, and highlights that no account is taken of deaths such as David’s, where the death is registered as being from natural causes, despite the post-mortem and follow-ups confirming a previously undiagnosed genetic cardiac condition. Do members have any comments or suggestions?