I am running 21 marathons in 21 months to raise money and awareness for SUDEP I will be keeping updates on progress through this and personal social media.

There are 21 epilepsy related deaths a week in the UK with over half of these potentially avoidable. This figure is likely to be significantly higher due to under reporting or inaccurately recorded cause of death.

SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy, leaving parents, siblings, partners and friends in the worst imaginable pain. The majority of people living with epilepsy are never informed with families learning only of SUDEP when it is too late.

NICE mandatory guidelines clearly state that clinicians must inform of SUDEP at time of diagnosis and at regular intervals to ensure patients understand risk and be able to put measures in place to safeguard.

While clinicians continue to cite their own anxiety and lack of appointment time as a reason not to inform, potentially avoidable deaths will continue to happen.