Looking back as we enter the new Millennium, we might ask why it has taken until the end of the twentieth century for attention to begin to focus on SUDEP. Although SUDEP was recorded in the 19th century, for most of the twentieth century the subject has been ignored and even denied in publications during the 1950’s and 1960’s. Between the 1970’s and 1980’s there have been occasional publications, but significant general interest in the issue is relatively recent. Hence the oddity of front page coverage of the Story of Prince John in 1998 :

“HRH Prince John, who has since infancy suffered from epileptic fits, which have lately become more frequent and severe, passed away in his sleep following an attack this afternoon at Sandringham ” The Royal Doctor Alan Reeve Manby recording the death of Prince John, the sixth child of George V and Queen Mary who died in 1919 aged 13.

This story of Prince John was hidden from the public and only resurfaced in February 1998 when photographs belonging to the Duke and Duchess of Windsor were published for the first time.

Failure to recognise SUDEP may be explained perhaps by a fairly glib response that there simply hasn’t been the research evidence necessary to properly inform about this subject. The obvious response is to wonder why researchers in the past were not interested in discovering the facts about this tragic phenomenon. A less obvious point is summarised in a recent speech in Parliament and is expounded in the pages that follow:

"On the crucial question of research, as recently as the 1980’s, few medical textbooks dealt with mortality or sudden death associated with epilepsy…More research is needed, but existing research also needs to be taken seriously - it has often been neglected or ignored, and many of the lessons that we are starting to learn now could have been learnt years, if not decades ago, if that research had been taken seriously." Stephen Twigg MP, Hansard 17th June 1998

It is difficult to believe that there was a deliberate and successful attempt to silence discussion of controversial research. Nevertheless, it is apparent that over the last hundred years factors were at play, which resulted in a powerful myth taking hold, that epilepsy itself could not be fatal.