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SUDEP Action call to get World Health Assembly to include epilepsy deaths in upcoming Resolution

The World Health Assembly is meeting in Geneva from 18th to 26th May and will be voting on a resolution for Epilepsy.  The resolution currently recognises that people with epilepsy are often subjects to stigma and discrimination because of ignorance and negative attitudes and that they face serious difficulties. The examples given are education, employment, marriage and reproduction.

The recognition of the impact of epilepsy is an important part of the resolution, yet it currently omits premature mortality and sudden unexpected deaths. Jane Hanna CEO of SUDEP Action says “The resolution is a real step forward for epilepsy and SUDEP Action supports it.  Premature mortality in epilepsy including SUDEP has a significant impact and we were surprised that it is not mentioned”

Each country is represented at the World Health Assembly and the UK delegation will be led by the Chief Medical Officer.

John Hirst CBE, whose son died from SUDEP, and a trustee of SUDEP Action said: “I wrote to the Chief Medical Officer on behalf of SUDEP Action. I am pleased that we have had a positive response from the Chief Medical Officer who agrees that there is a need to include mortality and has promised that the UK delegation will try to get sudden deaths included in the final text. ”

The consortium of epilepsy organisations in Scotland met this week. Chris Jeans from SUDEP Action Scotland proposed that the consortium added it’s support and wrote to inform the Chief Medical Officer and this was passed unanimously.

SUDEP Action is calling on epilepsy organisations that have a vote on the International Bureau for Epilepsy to add their support to this addition to the resolution.