Epilepsy Action Australia
Educational website on Medicinal Cannabis for people with epilepsy
November 2018 - November 2019
An estimated 87,500 people in Australia are affected by intractable (medication resistant) epilepsy including an estimated 20,000 children and young Australians. This increases their risk of morbidity, including, neuropsychological impairment, psychiatric and behavioural disturbances and psychosocial difficulties.
Despite growing evidence which suggests medicinal cannabis is a useful treatment option for managing intractable epilepsy, particularly in helping reduce the frequency of seizures, it remains very difficult for many carers of children with epilepsy and their families to access safe and regulated medicinal cannabis in Australia. There is a big gap in public education on medicinal cannabis due to the ongoing changes to regulations and the complexity of circumnavigating the system.
There exists an information gap for carers of children with intractable epilepsy inhibiting their ability to; navigate the health system, access regulated medicinal cannabis legally, and participate in clinical trials. Currently carers find it difficult to make informed decisions due to a lack of credible and easy to understand information about how to best manage their child's condition.
With our support, Epilepsy Action Australia will develop a research-based educational website to educate carers of children and young people with intractable epilepsy on medicinal cannabis.
The website will provide reliable and easy to understand information on medicinal cannabis; a self-directed pathway to access relevant information relating to differing government regulations; and a useful tool to help families and carers facilitate questions for discussion with their GP.
Many carers and families remain unclear on how to access regulated medicinal cannabis and participate in clinical trials, finding it difficult to make informed decisions on the use of medicinal cannabis without a solid understanding on its therapeutic role, long-term consequences and potential side-effects.
This website will provide an educational, evidence-based platform to ensure carers have the information they need to make informed decisions on medicinal cannabis use for their children. Carers accessing this educational website will know the information is from a trusted source and will have a greater understanding of the safe and regulated use of medicinal cannabis, learn the avenues to access it legally in Australia, and it will prevent potential harm from relying on uncredited information sources online. Carers will feel more empowered to make informed decisions on treatment options for people with epilepsy to improve their health outcomes.