Emma Smith and son Oscar (Image: SWNS.com)
Hearing about personal stories of patients and their families fighting for access to medical cannabis is always inspiring and uplifting. Knowing about their specific cannabis journeys gives us the chance to be more empathetic and more compassionate.
For those who need cannabis treatment themselves, these stories give them hope and a reason to fight. For those who do not believe, it gives them the chance to have a little faith. For those who have the power to bring change, it gives them the strength to do something about it.
This particular story is about five-year-old Oscar Smith and his mother, Emma, who are seeking access to a cannabis-derived drug to treat the boy’s medical condition.
Oscar is suffering from Doose Syndrome, which is a rare form of myoclonic astatic epilepsy. Because of his condition, the boy experiences up to 300 hard-to-control seizures in a day.
According to Emma, her son has been on a variety of medications, none of which seem to have worked. What’s more, these prescription meds bring with them unpleasant side effects.
The Bradform mum said that aside from suffering from hundreds of seizures every day, Oscar also has temper tantrums like a three-year-old and that his communication abilities have also been affected.
Cannabis first before surgery
Emma is afraid that Oscar may be forced to undergo surgery if he cannot use medical cannabis. An operation to have a Vagus Nerve Stimulator inserted into his chest and then wired around a nerve in his neck is Oscar’s only other option.
A VNS is a device used as last-reort treatment for seizures. However, Emma explained that it will only reduce her son’s seizures and won’t really cure him.
Moreover, just like any surgery, the VNS comes with risks. It is also likely that Oscar would not see any improvements for up to two years after the surgery.
This is why Emma wants Oscar to be able to try a new cannabis-derived drug called Epidiolex. They want to be able to try medical cannabis before going down the surgery route.
What is Epidiolex?
Epidiolex, manufactured by UK-based GW Pharmaceuticals, is the first cannabis-based medicine that has been approved by the United States Food and Drug Administration. The drug has been designed as treatment for Dravet syndrome and Lennox-Gastaut syndrome, which are both rare forms of childhood epilepsy.
Epidiolex used cannabidiol (CBD) and does not contain the psychoactive chemical ingredient tetrahydrocannabinol (THC). This means that the medication does not cause a high.
No neurologist would prescribe the drug
Emma said that their attempts to get their hands on Epidiolex have been stalled. Every neurologist they go to is reluctant to prescribe the drug, she explained.
According to Emma, she has been trying to get Epidiolex for Oscar since July. She said that they are now on their fifth neurologist and none has been able to begin the process of helping them obtain the drug.
The UK’s current cannabis policy
While medical cannabis is still officially illegal in the United Kingdom, the UK Government has already appointed a temporary panel of experts that would be receiving applications for medical cannabis licenses from senior physicians. This was after a series of high-profile cases of sick children being denied cannabis medication has sparked a national conversation regarding the issue.
This panel is tasked to make quick recommendations to ministers. According to the Home Office, the ministers will then sign off applications within two to four weeks.
However, for an application to be approved, doctors first need to show that there is an exceptional clinical need for cannabis.
According to Emma, this is where the problem lies. Doctors, she said, are just reluctant, with some even telling parents that they would only consider applying for license if the child was in intensive care.
You can read our special report on UK’s cannabis legislation here.