New service the missing link for epilepsy sufferers

HOBART residents living with or affected by epilepsy are set to benefit from a telephone-based peer support service following its official launch on Tuesday 13 September.

Based on the well-established Australian model for people affected by cancer, ‘Epilepsy Connect’ offers telephone-based peer support services to every Tasmanian affected by the disease.

Developed by Epilepsy Tasmania in partnership with the University of Tasmania (UTAS), the program was made possible through a grant from the Tasmanian Community Fund (TCF) and is believed to be the first of its kind in the world.

Epilepsy Tasmania chief executive officer Wendy Groot said peer support was known to be beneficial in reducing the psychosocial burden of epilepsy.

“The face-to-face support groups we run in Hobart, Launceston and Burnie are a great opportunity for people to discuss issues and support each other in person,” she said.

“However, until now, people outside the centre had missed out.”

UTAS Centre for Rural Health lecturer and Epilepsy Connect coordinator Dr Simone Lee said she hoped the program would make a difference to the lives of all Tasmanians touched by epilepsy.

“What began as a simple idea back in 2015 has become an exciting new program to support the epilepsy community of Tasmania,” she said.

“Interest in the program has been overwhelming and I’ve very excited about what the future holds.”

At any given time, one out of 100 Australians will experience epilepsy, equalling more than 5000 Tasmanians.

Research has shown that people with epilepsy endure family dysfunction, reduced social and leisure opportunities, increased levels of anxiety, depression and low self-esteem.

TCF chairwoman Lynn Mason said the Fund was delighted to invest in the project, which she said was a significant breakthrough in epilepsy education.

“This project will deliver much-needed services and support for people who have identified needs associated with their epilepsy,” she said.

“Epilepsy can be a very isolating disease, so to provide a supportive environment in which people with epilepsy can build confidence, self-esteem, trust and social bonds is a huge step forward in facilitating self-management.”

Minister for Health Michael Ferguson, who was present at the launch, said Epilepsy Connect was an exciting initiative that gave Tasmanians the chance to access peer support, no matter their location.

Epilepsy sufferers are encouraged to phone Epilepsy Connect on 1300 852 853.

Caption: From left, UTAS Centre for Rural Health lecturer and Epilepsy Connect developer Dr Simone Lee, Epilepsy Connect peer support volunteers Danielle Schramm and Katie Dineen, Golden Light award winner for epilepsy service Kym Meers and Epilepsy Tasmania chief executive officer Wendy Groot.

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