Hundreds of UK families are accessing medicinal cannabis illegally to treat their child’s drug resistant epilepsy. And that count may just be scratching the surface.
Medical cannabis was legalised in the UK to treat some forms of severe paediatric epilepsy years ago and specialist doctors are permitted to prescribe cannabis medications. According to Medcan Family Foundation, which works on behalf of families on issues relating to access, approximately 30 thousand epileptic children in the UK could potentially benefit.
But regulatory red tape, a lack of funding, knowledge and training are among the issues blocking access; pushing families to illegal sources that have their own risks.
MedCan’s “Open Secret” Study found nearly UK 400 families were sourcing cannabis illegally for their child, but the real figure is likely much greater.
“Whilst a number of factors have led to this situation, there is no avoiding the chief among them is the successive governments failure to push through a path to licensing of the second generation full spectrum cannabinoid medicines, allowing safe, regulated access to these potentially life-saving medications for children with otherwise untreatable epilepsy,” says Medcan.
Some of the findings of the study were featured in a recent BBC documentary, and the coverage has appeared to have done some good. A debate in Westminster Hall has been scheduled for January 30th, and Medcan says it has sent the complete study to all 650 MPs, seeking their support and encouraging them to attend the debate.
The organisation is calling for supporters to send an automated email to their MPs, urging them to support the campaign.
One of the founders of Medcan Family Foundation is Hannah Deacon, who started the organisation following her own fight to secure an NHS prescription for her son, Alfie. Alfie Dingley was the first patient in the UK to receive a permanent cannabis licence. But 7 years on from medicinal cannabis being approved, only a handful of children have been able to access a prescription on the NHS.
Regarding parents accessing cannabis illegally with risks concerning dosage and quality, Medcan says:
“But imagine watching your child suffering endless daily seizures, being told there is nothing more the NHS can do, being told you will lose them. Imagine knowing there is a medication that might stop or significantly reduce their disability and risk of death, but there is no way for the doctor to prescribe it. Parents who are taking this step are taking it as a last resort, quite literally.”
