Scared and uncertain: A guardian’s fight for continued medicinal cannabis trial

Medical cannabis remains difficult to access and controversial.

By VICTORIA EASTOE

There is still no promise of government-supported medicinal cannabis trials for epileptic children, according to the guardian of a Lennox-Gastaut Syndrome child.

Dearne Rattray-Grant’s son Deklan was the first child to begin a cannabidiol trial in Tasmania, but getting there was not an easy process.

She said while she was waiting for approval to join the trial, her son had more than 700 seizures.

“I was ringing Hobart four times a day, every day to see when it would get passed. It was unbelievable,” Ms Rattray-Grant said.

“I was just so frustrated. We were going through it so many times a day and of a night and they were just sitting.”

She said they still “couldn’t promise me or guarantee me that he will stay on the trial”. 

Lennox-Gastaut Syndrome is a severe form of epilepsy that begins in childhood, with seizures and other symptoms that are  typically resistant to treatment.

Ms Rattray-Grant believes that the negative stigma that surrounds the use of cannabis products is one of the reasons why moves towards legalisation had taken a long time.

She said she lived in fear when she first started treating Deklan with cannabis products, before it was legal.

“I was scared they (child services) would take him because I was giving him something illegal,” Ms Rattray-Grant said.

Alcohol and Drug Foundation spokeswoman Laura Bajurny said the stigma around cannabis use needed to change in order to create improved support systems and accessibility.

“Stigma about drug use is one of the major barriers to people seeking help and to even having conversations with their loved ones,” Ms Bajurny said.

She said she did believe, however, that public opinion had begun to shift in favour of medicinal cannabis.

“Introducing medicinal cannabis slowly and then quickly changed hearts and minds,” Ms Bajurny said.

Monash University Medicine Student Laura Gazzard believes perspectives on medicinal cannabis need to change.

Findings presented in the New England Journal of Medicine 2017 found that 40 per cent of those treated with medical cannabis had their seizures halved and the severity of seizures reduced. With over 250,000 Australians living with epilepsy there is strong support from Epilepsy Action Australia for medical cannabis.

Ms Rattray-Grant said cannabis reduced the impact of the seizures for Deklan.

“It has helped them, but it won’t stop them, it’s only reducing them. And they’re not as severe as what they were before,” she said.

“Since he’s been on the trial we haven’t been to hospital.”

Monash University Medicine Student Laura Gazzard said the benefits of cannabis products could not be ignored and it was time medical professionals, politicians and the general public changed their perspectives.

“Cannabis seems to be helping a lot more than its hurting,” Ms Gazzard said.

Ms Rattray-Grant called upon Tasmanian Health Minister Michael Ferguson to change his perspective and said governments should not have the final say.

“It should just be legalised. Fair enough you go to a GP or a health professional for epilepsy etc, but if you’ve got cancer or something like that you should be able to go to your GP and go on it.”