Epilepsy is being misdiagnosed or diagnosed late because GPs vary in their confidence and capability to recognise seizures, a senate inquiry into epilepsy found.
The Senate Community Affairs References Committee said GPs played a central role in early identification of epilepsy and called for an end to fragmented, poorly integrated care.
Last week, it made 27 recommendations following 356 submissions and seven public hearings.
These recommendations formed part of a National Epilepsy Action Plan aligned with WHO’s Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022-2031, which Australia endorsed in 2022.
The committee recommended the Department of Health, Disability and Ageing lead its implementation.
First, a national awareness campaign would produce communication materials for GPs – including tailored guidance for pregnant women with epilepsy, such as the risk that anti-seizure medications taken during pregnancy can cause foetal anticonvulsant syndrome.
Education on focal seizures and non-convulsive therapy was also called upon.
Nearly one in three Australians live outside of a major city, but this population is served by only 4.1% of neurologists, according to research published in BMJ Neurology.
The Senate report’s third recommendation called for a national epilepsy workforce plan.
“The committee is of the view that GP capability on epilepsy management must be strengthened, and that the variable availability of neurologists must be addressed in order for epilepsy diagnosis and treatment in Australia to improve,” the report read.
The plan would provide GPs with more opportunities to upskill, including training and materials on how to talk to patients and their families about sudden unexplained death in epilepsy (SUDEP) in a timely, evidence-based, and sensitive manner.
ACRRM president Dr Rod Martin told The Medical Republic the senate inquiry report didn’t account for rural generalists because the pathway wasn’t recognised when the committee took evidence.
However, he said RGs specialising in internal medicine would increasingly be able to close the diagnostic gap in rural and remote regions for more complex presentations and treatments, reducing the need for patients to travel to metropolitan areas for diagnosis.
But he told TMR it would take at least another five to seven years for these doctors to become certified.
“You need to have plenty of people on the ground so that [epilepsy] doesn’t get missed,” he said.
But the challenge grew when the signs of epilepsy were subtler than convulsive seizures, he told TMR.
“Our nearest neurologist might be 100km down the road, but it’s also four to six months to be able to see them,” he said.
Distance itself might not be the barrier, he said, but a wait that long carried risks for patients who continued to experience seizures.
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Epilepsy Tasmania proposed that a funded GP epilepsy education pathway, developed collaboratively with clinical colleges and epilepsy organisations, would prevent patients from falling through the cracks.
“Many GPs provide excellent care, particularly in rural communities, but they need access to clear referral pathways, decision support, education, timely specialist advice and patient-facing resources,” read an excerpt from Epilepsy Tasmania’s submission in the report.
The report also called for funded clinical nurse consultants for developmental and epileptic encephalopathies (DEEs) in each jurisdiction.
It proposed epilepsy nurse specialist and epilepsy navigator roles, including regional outreach and post-diagnosis education, be funded as a federal-state collaboration.
But improved access to care would also require optimal care pathways for epilepsy, drug-resistant epilepsy, and DEEs.
Given one in three people with epilepsy are estimated to be medication-resistant, the committee called for appropriate focus and funding for clinical trials and epilepsy research.
With diagnosis often described as “dependent on persistence rather than pathway” and a “diagnostic odyssey”, recommendation 17 called for the implementation of a national referral model for epilepsy community organisations following diagnosis.
“Diagnosis affects treatment; treatment affects quality-of-life, safety, and participation; system design determines whether individuals receive coordinated post-diagnosis support or are forced to self-advocate,” the report read.
With the ACT and the Northern Territory lacking epilepsy services, improved access to neuroimaging services – a core diagnostic tool for epilepsy – across jurisdictions was deemed “a matter of urgency” to achieve more equitable access.
Telehealth services should serve as a supplement, not a substitute, for in-person, community-based care delivered locally, the report read.
Hospitalisations for epilepsy are 2.1 times more frequent in remote and very remote areas than in major cities, accounting for over two-thirds of epilepsy expenditure, according to Australian Institute of Health and Welfare (AIHW) data.
Given Indigenous Australians are twice as likely to have epilepsy and face higher acuity, higher hospitalisation rates and geographic inequity, the committee recommended increased government funding for culturally safe Aboriginal hostels in cities with comprehensive epilepsy centres.
It also called on the NDIA to review NDIS guidelines to ensure consistent eligibility and funding decisions reflected the condition’s lifelong, episodic, and sometimes life-threatening nature, along with its hidden effects on mental health, functional limitations, and cognition.
Read the full report and details of the inquiry here.
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