Up until her mid-30s, Hayley Gilich had never been in an ambulance. Now, she has been rushed to hospital so often she has lost count.
- There are just two epilepsy support groups left in WA
- Epilepsy WA needs $500,000 to keep services going
- An estimated 27,000 people have epilepsy in the state
“If I am standing up I will fall over completely with no recollection or concept of what I am doing, so needless to say that more often than not will turn into an injury — sometimes a bad one,” she said.
Diagnosed with epilepsy later in life, Ms Gilich said living with the neurological condition has been a big adjustment for her and her family.
She experiences tonic-clonic seizures, which involve a loss of consciousness and violent muscle contractions.
The diagnosis has meant she can no longer drive or even go on walks alone, in case she has a seizure.
She said it was also “terrifying” for her family, who witness the seizures.
“Epilepsy is living with a condition where you are constantly haunted by the fact that you might have another seizure,” she said.
“And that whatever you’re doing and whoever you’re with and whatever situation you’re in might suddenly be changed.”
‘Invaluable’ help from Epilepsy WA
Living with epilepsy is something Ms Gilich has now adjusted to.
But she said that was largely thanks to the support and information from not-for-profit Epilepsy WA.
“Unless you’re in contact with a place like Epilepsy WA, you don’t even know the questions to ask sometimes — the seizure alert technology that’s available, the support groups that are available,” she said.
But the support group she attends is now one of just two left in the state.
Four of the six groups have disbanded because of a lack of funding.
“I found it incredibly hard to tell participants that their support group had been put on hold,” Epilepsy WA chief executive Emma Buitendag said.
“Some of those participants had been going to the same group for over a decade.
“It saddens me greatly.”
WA and South Australia are the only two state associations that do not receive funding from their state governments, despite lobbying for years.
Instead, they rely on donations to deliver their services.
“We are the go-to association for epilepsy support in WA,” Ms Buitendag said.
“It’s really sad that we are unfunded and we scrape to get by.”
She said they were seeking $500,000 from the state government to help deliver their services.
High costs of epilepsy on health system
Figures show one in 25 people will develop epilepsy at some stage during their life, while an estimated 27,000 people have epilepsy in WA.
A 2020 Deloitte Access Economics report found the health care burden of epilepsy in Australia was “similar to prostate and lung cancers”.
In a statement, the state government said it was reviewing services provided by community-based neurological organisations in Western Australia to inform future funding decisions.
It said the Department of Health did provide support to people living with epilepsy through the Neurological Council of Western Australia, which provides general neurological services, including supporting people with the condition.
It also said it provided funding for hospital diagnosis of epilepsy.