Wantage charity calls on government to close epilepsy ‘knowledge gap’
SUDEP Action says improved understanding of the condition could help save lives
A Wantage-based charity says a lack of awareness around epilepsy risks must be addressed as it begins a new partnership with the Government aimed at preventing sudden deaths.
SUDEP Action says more needs to be done to ensure people living with epilepsy, and the professionals supporting them, understand the condition and how to manage individual risks.
One of the founders, Jane Hanna, said: "We need more epilepsy specialists, no doubt about that.
"But even if we had all those specialists, we really need to tackle that knowledge gap because that's what's been coming up in all the prevention of death reports of many young people who've been dying out of the blue."
Jane said epilepsy varies significantly between individuals, making an accurate diagnosis an important part of finding what support someone may need.
"It's no good just knowing you have epilepsy. It's really important you know which epilepsies you have," she said. "There are over 40 different types and that is the beginning of understanding the risk."
She said getting the right diagnosis as quickly as possible can help people access appropriate treatment, with the right medication able to stop seizures for seven out of 10 people.
Jane said reducing seizures is one of the key steps in lowering the chance of sudden death, but added that people also need to understand the wider factors that could affect their health.
The charity says research and practical tools developed over decades should be available to help people with epilepsy and those supporting them make informed decisions about their care.
"It's getting that body of knowledge, not just to the specialists in the hospitals, but in every neighbourhood, so that the GPs understand it, so the pharmacists understand it, so providers of care understand it," she said.
SUDEP Action recently met Health Minister Sharon Hodgson in Westminster, with the charity saying the Government has agreed to work with them on improving epilepsy risk management.
"The minister was really receptive, so it was a very hopeful meeting," Jane said.
"She set up a roundtable in October and I've now got dates now in the diary with the Department of Health, who have said that they're keen to really take forward all the issues."