Under consideration PE2067: Improve data on young people affected by conditions causing Sudden Cardiac Death
Calling on the Scottish Parliament to urge the Scottish Government to commission research to establish how many people aged 14-35 are affected by conditions that cause Young Sudden Cardiac Death; clarify the number of people who die annually in Scotland from these conditions; and set up a pilot study to establish if voluntary screening can reduce deaths.
Previous action taken
I have written to, and met with, my MSP, Oliver Mundell, regarding the lack of clarity in data currently available.
I have also introduced an MSP Pledge urging MSP’s to support a national strategy to prevent Young Sudden Cardiac Death and help save the lives of at least 12 healthy young people who die every week. Along with other bereaved parents, I have raised money to provide screening and publicised this issue in national press and television.
On 19 March 2022, my son, David Hill, died while playing for the Parliament’s rugby team in Dublin. Almost a year after his death we found that he had died from an undiagnosed genetic condition which stopped his heart.
There is no screening programme for young people with these conditions and current estimates are that there are at least 12 preventable deaths each week in the UK.
Cardiac Risk in the Young (CRY) support and fund research as well as providing screening, which is mostly funded by bereaved families. Through this, CRY believes the incidence of young people identified with a potentially fatal cardiac condition (if untreated) to be 1:300, with another 1:100 to be found with a condition that could cause serious issues later in life if not monitored. The National Screening Committee (NSC) believe the incidence to be approx. 1 or 2:100,000. This discrepancy makes it difficult to establish the benefit of funding a national strategy. With accurate data from Scotland, the NSC could revisit their decision.
Screening costs £65 per person, and initially consists of an ECG, with follow-up by cardiologists.