A new report by Medcan Family Foundation reveals 382 UK families are taking a “last resort” and sourcing illegal cannabis products to treat their children’s epilepsy.
Medcan’s research has revealed that families are “being pushed into criminality to save their child’s life”, by sourcing cannabis products from drug dealers and overseas.
This is despite medical cannabis becoming legalised in the UK in 2018 to treat some forms of severe epilepsy in children.
According to Medcan, National Institute of Health and Care Excellence (NICE) guidelines allow specialist doctors to prescribe cannabis medications if they are satisfied there is a possibility of clinical benefit.
“However, a combination of lack of understanding by decision makers, lack of funding for all but the most exceptional cases, no training within the NHS, and lack of interest from the pharmaceutical industry, means access is effectively blocked for thousands of children across the UK,” Medcan said.
The full report, Open Secret: use of illegal cannabis by families managing childhood epilepsy, will be published on 15 January.
Aspects of the report have been shared on BBC Radio 4’s File on 4 Investigates today, alongside the stories of parents breaking the law to give their children cannabis medication that they say is keeping their children alive.
However, report author Alice Salisbury, highlights that this route carries big risks. She said: “It is impossible to deny that there are children who have gone from having dozens of life-threatening seizures daily to seizure-freedom using these products.
“However, there is huge variability in the quality of both products and advice that parents are being given.
“Some families have undoubtedly managed to obtain high-quality liquids supplied by people who appear able to offer responsible advice on how to use them, but we also witnessed many parents being given random products with no certainty on the content, and advice on dosing and drug interactions that is simply dangerous.”
Epilepsy Action says we need short term solutions while research is underway to help families with this “life changing issue”.
‘Face up to reality’
Chair of Medcan, Hannah Deacon’s son Alfie was the first person in the UK to receive an exceptional NHS prescription for advanced medical cannabis. She said: “Whilst cannabinoid epilepsy treatments continue to develop in other countries, the UK is being left behind.
“Diligent and loving parents feel forced to take desperate measures in the hope of giving their child the same chance for survival that children in countries like Canada and The Netherlands have.
“We are calling on the government to urgently review the situation to prevent more families being pushed into criminality to save their child’s life.
“The sad reality is that if parents are given a choice between watching their child suffer or breaking the law, many – perhaps most – are going to choose to break the law, especially when they see the cannabis treatment working.
“The government and clinicians need to face up to this reality. They cannot continue to kick the issue into the long grass.
“To any families in this situation or who are thinking of going down this route, we urge you to reach out to Medcan Family Foundation for confidential clinician-led advice, to make sure you understand the real risks.”
‘A last resort’
Medcan CEO Matt Hughes, whose son Charlie has Lennox-Gastaut syndrome, said: “Many people will find it hard to imagine how a parent could do something like this.
“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 it, 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. Policy makers have the power to change the current narrative and should ask themselves, given the choice between watching their own child die and breaking the law, what would they do?”
Rebekah Smith, chief executive at Epilepsy Action, said: “We completely understand that medical professionals need research to back up prescribing new kinds of medication.
“But the fact that hundreds and possibly thousands of people are looking to illegal channels to get cannabis for their children poses significant risks and highlights the urgent need for short-term solutions to support those families while the research is underway.
“That is why we’ve supported Medcan in bringing together their research and will to continue to support lobbying to create short term solutions to a life changing issue.”
Trials into medical cannabis were launched in November last year, but Medcan believes they will use a less advanced version of the medication and will be “unlikely to stem the flow of parents going to the illegal market”.
The full report will be published by Medcan tomorrow.
You can listen now to the BBC Radio 4 File on 4 Investigates programme, Cannabis Kids: The parents breaking the law to help their children with epilepsy
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