Stephen Brown: A true SUDEP Action champion

Stephen Brown has been a driving force of SUDEP Action since the charity’s inception. Stephen has now stepped down as a trustee but will continue to serve SUDEP Action as a vice-president.

A former consultant neuropsychiatrist at Cornwall NHS Trust, Stephen first wrote about the urgent problem of sudden death in epilepsy back in the late 1980s before SUDEP was even defined or accepted. He worked with SUDEP Action as a scientific advisor from the early 1990s and was honoured to be asked to chair the organisation in 2010. He was a convenor of the first international research workshop into SUDEP and was a co-chair and editor of Epilepsy and Sudden Death. (Epilepsia 1997), and later co-author of the National Sentinel Clinical Audit of Epilepsy-Related Death (Epilepsy-Death in the Shadows, 2002).

Stephen said: “Being a trustee for SUDEP Action has been my last connection with my former career – I became a consultant in 1984 and retired in 2010. I remember when I was chair of the British Epilepsy Association and National Epilepsy Week was coming up, sometime in the eighties. We made the theme SUDEP and were generally regarded as mad because most neurologists back then didn’t believe it. We invited Jane Hanna to speak, and we became firm friends. There is still much to do but it’s been a blessing to work with Jane and the charity over so many years because the staff are absolutely the best people.”

Stephen originally wanted to be a pathologist, but this career option was diverted when he discovered he was colour blind. After medical school he trained in psychiatry and became a research registrar in neurology – a turning point  – where he worked under the renowned epilepsy specialist Ted Reynolds. He became a leading voice in the call for more to be done to understand and recognise SUDEP.

He said: “In those days no one knew anything about SUDEP – it basically didn’t exist. I realised there was an issue in misreporting, so we used a cuttings service to look at every mention of epilepsy and people dying  in the press. We followed this up with requests for information about inquests and got a mixed response – some said go away and some were helpful. What we discovered was a hopeless lack of correlation with the truth – deaths were being put down as suffocation on the pillow, even when people were found face up, or as status epilepticus. For status epilepticus there must be fitting for at least half an hour, by definition, but from eyewitness accounts this was often not the case.”

Stephen said anyone speaking about SUDEP in the 1980s and 1990s was often viewed as a crank within the medical and scientific worlds. However, he approached Jane Hanna to give a talk for National Epilepsy Week – because Jane was trying to get answers following the death of her partner Alan in 1990.

“It was a risk looking back, asking Jane to speak, because I had never met her. However, she was brilliant.”

With Jane and others, Stephen helped set up the first international conference and the organisation Epilepsy Bereaved (now SUDEP Action) was established. When he was retiring from medical practice, Jane asked him to help sort out an away day for trustees, and afterwards persuaded him to take on the role of charity chair. He agreed to do it for three years, but held the role for ten years, staying on as a trustee afterwards to serve on the board for almost fifteen years.

He said: “Sometimes I think we’ve come such a long way since then, and at other times I realise there’s still so much to do. What we have demonstrated is that you can reduce epilepsy mortality by treating epilepsy properly. It’s now known and accepted that SUDEP only occurs when there are seizures and is always seizure related, so the more we can do stop people having seizures, the better. Things we have done at SUDEP Action such as the introduction of the EpSMon app, really do make a difference.”