Sudden Unexpected Death in Childhood Debate
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Gregory Campbell
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Sudden Unexpected Death in Childhood
Gregory Campbell Excerpts(1 day, 11 hours ago)
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Mr Gregory Campbell (East Londonderry) (DUP)
I congratulate the hon. Member on securing this debate on what is an incredibly emotional topic. It is difficult to imagine parents having grief beyond what he is describing. On the research, does he agree that while no guarantees can be given, if Governments put more money into it, families will understand that and will see progress and, we hope, a better outcome?
Andy MacNae
Precisely, and that would be to treat this issue with the importance, urgency and focus that it deserves. The very fact that most research is now charity-led is quite revealing.
This research includes the Pioneer study—a population-based investigation to reduce sudden unexplained deaths in childhood—at the University of Bristol, which is beginning to analyse national mortality data and incorporate family-led research priorities. Science has advanced: genomics, cardiology, neuropathology and data science now offer real hope that the causes that were once thought unknowable may finally be within reach. However, scientific possibility alone is not enough. Findings from the UK’s Pioneer study, alongside the growing body of global evidence on SUDC, must be properly considered and applied. They should inform linked datasets and guide action by organisations such as Genomics England, the National Institute for Health and Care Excellence, the National Institute for Health and Care Research, the Department of Health and Social Care and the NHS.
The opportunity is there, but right now we rely far too much on this limited charity-funded research. If we are ever to shift the dial, as the hon. Member for East Londonderry (Mr Campbell) said, we need a national plan delivering co-ordinated, planned actions that enable and accelerate meaningful projects.