Calls for epilepsy training to be mandatory in ECEC

Pharmacy icon Rhonda White AO has joined Epilepsy Queensland in calling for mandatory epilepsy training for schools and early childhood education and care (ECEC) settings, citing research which shows a strong correlation between epilepsy and adverse educational outcomes, with knock-ons including early school leaving, unemployment and poverty in adulthood.

Ms White, the co-founder of Terry White Chemists, made her comments at Epilepsy Queensland’s annual symposium, reflecting on her own son’s childhood experiences as she highlighted the need for epilepsy-specific education to help overcome stigma and discrimination.

“Our lives were changed by one smart teacher – Mr Robinson,” she said.

“In Year Four my son’s reports had included comments like ‘not paying attention’ and ‘can be disruptive in class’. Nothing that sent up any particular red flags. But the following year, his teacher came to me one day saying, ‘I think we have a problem we need to solve for your son’.”

“With that one sentence, he signalled his preparedness to help and a commitment to inclusivity.”

“It transpired that my son had been calling out, standing up and walking around in class for no reason. But this teacher looked beyond the behaviour and considered the possibility that he might be having seizures. He could only do so because he understood epilepsy from the experiences of his own brother.”

“Having the insight and courage to see things from a different angle, he set us on a positive path to navigating epilepsy management,” Ms White continued.

“I often think, ‘thank you Mr Robinson’, because that day my son’s life was set on the right trajectory to deal with the issues and challenges he was going to face going forward.”

Epilepsy Queensland CEO Chris Dougherty says that epilepsy training is “about much more than first aid”.

“What we hear from parents is that while there may be members of staff who know how to respond to the seizure itself, educators aren’t typically well-equipped to deal with the implications for a child’s social, emotional and behavioural development – not to mention their learning,” he said.

“If you want to implement appropriate classroom management techniques or deliver the right support, you need to actually understand epilepsy.”

“Epilepsy can have a huge impact on a child’s experience at school, from the seizures themselves, to medication causing problems with concentration, to the effect on social inclusion and – as a result – psychosocial wellbeing.”

“People think of epilepsy as being about seizures, but the medical impacts are just one piece of the puzzle. Lack of understanding and awareness can be deeply stigmatising, leading to isolation and discrimination. We have to do better.”

Epilepsy is one of the most common and disabling chronic neurological conditions. It is characterised by recurrent seizures, which are caused by a temporary disruption of the electrical activity in the brain.

The condition affects people of all ages and, although treatable, often requires lifelong medication. Approximately 30 per cent of all cases will not respond to medication, necessitating surgery or vagus nerve stimulation (VNS) as part of the treatment.

Around the world, approximately 50 million people are living with the condition, many of whom continue to experience discrimination and human rights violations. As a result, the WHO has formulated an Intersectoral Global Action Plan to address the long-standing neglect of neurological disorders.