Make it a legal requirement for NHS clinicians to inform all people newly diagnosed with seizures of SUDEP (Sudden Unexpected Death in Epilepsy) risks and to provide vital advice on safety measures and risk-reduction guidance to protect vulnerable lives.
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Previous Preventing Future Deaths (PFD) reports have highlighted a failure in some cases to inform people of the risks, yet we are concerned that the warnings are ignored and people continue dying. We believe SUDEP support groups share a clear consensus: families aren't warned or given risk-reduction tools like the SUDEP Action checklist. We are concerned that families have lost loved ones without ever being informed of the risks. We believe we need the legal requirement we've proposed in order to protect patients.