Most of these deaths are of young people, like the Prince, who "fell asleep" after a seizure and never woke up. It is also true that until very recently these deaths were kept hidden. The death certificates in many cases would not reveal the cause of death as epilepsy. Indeed, until very recently few people were prepared to talk about sudden death in epilepsy. Although you state that Prince John's seizures had increased in severity and frequency before he died, and indeed that Queen Mary wrote that his death "came as a great release", Epilepsy Bereaved knows of many young people who have died whose condition has been considered sufficiently mild not to warrant medication.
Epilepsy affects 1.5 million people in the UK at some time in their lives, especially during childhood and old age. Yet the illness attracts little by way of research money - 20p per sufferer each year, compared to pounds 250 per person with muscular dystrophy and pounds 140 for multiple sclerosis. Current epilepsy services are inadequate; 40 per cent of people with epilepsy are seen by general physicians who have no training in neurology. The case for a national inquiry is that with improved management of seizures these tragic deaths of young people may be prevented.
Director, Epilepsy Bereaved
PO Box 1777
Bournemouth, BH5 1YR