“A total and utter devastating shock”: how one man’s death sparked thirty years of campaigning

In 1990 Jane Hanna’s partner Alan suddenly died in the night. He was 27 and a keen sportsman, but he had recently been diagnosed with epilepsy. Jane and Alan had been told his condition was not life threatening, there was nothing to worry about, and that if Alan had a seizure Jane should put a spoon in his mouth. Jane was told people could not die from epilepsy. Everything they had been told was wrong.

Alan Pring was just 27 when he died a sudden and unexpected death from epilepsy (SUDEP)

Jane was a young barrister teaching law at Oxford university at the time. Overwhelmed by grief, she started researching deaths from epilepsy and found that many people with the condition were dying suddenly and unexpectedly. Furthermore, it seemed that many of the deaths could and should be prevented if those affected received the right treatment and proper monitoring by medics. Compelled by grief, Jane set up a charity to support families affected by epilepsy and to prevent more unnecessary deaths. She had a pivotal role in securing government funding for a National Audit of Epilepsy Deaths which showed 42% of deaths were potentially avoidable. That was in 2002. The Chief medical officer reported at the time that the NHS did not take epilepsy seriously. Twenty years on, and Jane says that’s still the case and that hundreds of people are dying young every year because they are not being properly informed about the risks and are not on the most effective medication.

Jane Hanna OBE, Founder of SUDEP Action

Jane was awarded an OBE in 2010 for services to families. She is a Liberal Democrat Councillor for Grove and Wantage in Oxfordshire.

Listen to Jane’s story on the podcast PREVENTING EPILEPSY DEATHS on Angela Walker In Conversation, subscribe wherever you get your podcasts or watch on YouTube.  If you have enjoyed reading this article please share it on social media so others can too.

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