Epilepsy WA has continued its push for better epilepsy care, after telling a Senate inquiry last month that some Western Australians could face wait times of up to five years for a neurological assessment, diagnosis and testing.
The state’s peak body for epilepsy, headed by chief executive Emma Buitendag, has been calling for state and federal government action ahead of the Senate handing down its report on September 17.
Ms Buitendag and Epilepsy WA volunteer Andy Milton gave testimonies in Perth before the Senate Community Affairs References Committee at the end of last month.
They spoke of gaps in WA’s epilepsy services, the specialist workforce, multidisciplinary care and the risk of Sudden Death in Epilepsy (SUDEP).
Epilepsy WA told the inquiry of long wait times, raised concerns about infrastructure capacity and called for improved access to diagnostic testing, more investment in specialist epilepsy services and better information for people with epilepsy and their families about seizure-related risks.
“Now we need those voices to lead to change,” Ms Buitendag said in a statement on Thursday.
“Western Australians should be able to access timely, contemporary epilepsy diagnosis, treatment and support regardless of their postcode or financial circumstances.
“When people are living with seizures and waiting for answers, months and years matter.
“This is not simply about inconvenience.
“Delays can affect people’s safety, independence, employment, education and their quality of life.”
Mr Milton, a father of a 15-year-old girl with epilepsy who died, delivered an emotional testimony at the hearing in August, advocating for greater epilepsy and SUDEP awareness.
“Families such as Andy’s have lived through consequences no parent should ever experience,” Ms Buitendag said on Thursday.
“Their willingness to tell those deeply personal stories to this inquiry places a responsibility on decision-makers to listen and respond.
“We cannot change what these families have been through, but we can make sure their experience helps create a safer system for other Western Australian families.”
Ms Buitendag commended the state government for developing its first neurological health strategy, but said work from both state and federal governments would be important to improve gaps in epilepsy care.
“WA is developing its first neurological health strategy, which creates an important opportunity to make sure epilepsy receives the attention it deserves,” she said.
“At a Commonwealth level, we need to look seriously at barriers such as the cost of diagnostic testing and how national investment can improve access to epilepsy care.
“Thursday’s report should not be the end of this inquiry.
“It needs to be the beginning of action.”
The committee spearheading the nationwide epilepsy inquiry was granted an extension to publish the report next Thursday September 17.
You can read the full article in the Business News here.
