SUDEP Action

Making every epilepsy death count
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What’s in a name?

Supporters left EB’s annual conference fired up to do everything they can to reach out to people with epilepsy and newly bereaved families.

During breakout sessions at the weekend event, members were asked how they had found the charity and whether those channels could be improved.  Many families suggested children and young adults with epilepsy need to be warned of the risks of SUDEP – Sudden Unexpected Death from Epilepsy – particularly at universities and schools.

The police, coroners, undertakers and anyone who comes into direct contact with families immediately after a death also need to be better informed about the syndrome.  But the feeling among many supporters was that the major hurdle to contact with the charity was its name.

One fund-raiser said she found the name Epilepsy Bereaved “too negative” so she told people she “was collecting for an epilepsy charity”.  Some said the word “bereaved” put people off wanting to be connected to the charity, while others said the name failed to sum up all the good things EB does.  Interestingly, in-depth interviews carried out by staff with over 40 randomly selected supporters raised similar concerns.  Of those asked, many said they had an attachment to the name, some said they would be disappointed if it changed, but most claimed it would not bother them.

EB’s director Jane Hanna OBE said: “The charity faces exciting times ahead with the launch of a new website and some major research projects.  “But it is essential to the preventive action on deaths that we attract as many families as possible to support the cause. And if our name is holding us back from achieving that ambition, then it is something we definitely need to consider.”