EB outlines vital work to combat SUDEP
Jane Hanna, EB’s director, told the South West Epilepsy Conference how the charity carries out vital research to limit the number of SUDEP deaths, raises awareness to save lives and provides ongoing support to those left behind.
She also highlighted how the charity is working with epilepsy organisations across the world to collaborate on projects to take action on SUDEP and all epilepsy-related deaths.
The Exeter event, now in its second year, brought together more than 60 people who work in paediatrics, genetics, neurology and children’s psychiatric services. The audience also heard about anti-epilepsy drugs, seizure dogs and the importance of reporting deaths.
Dr Rohit Shankar, consultant in developmental neuropsychiatry at Cornwall Partnership NHS Foundation Trust, said the conference gave an oversight of the work being done by all the different sectors of the epilepsy world.
“Epilepsy is a very fluid area and initiatives are happening rapidly, so this is a good chance to keep everyone up to date with the latest developments,” he said.
“I’m sure many people left the event knowing more about the many aspects of epilepsy, which will hopefully mean better patient care, more referrals and a greater sensitivity about death."
“After all, it is important we get everything into the open; so patients are more aware of the issues surrounding epilepsy, can take some responsibility for it and therefore keep safe.”
Ms Hanna added: “It was great to meet so many motivated doctors and nurses who work on the front-line with families. All had experience, tragically, of SUDEP and it was good to inform them about the global campaign to combat SUDEP, bring them the latest research and information on ways to approach prevention as well as offering practical and emotional help to families before and after an inquest.”