New trials into benefits of medicinal cannabis for kids with epilepsy
Trials into the benefits of cannabis-based medicine for children and young people with epilepsy are finally beginning after a mum spent years campaigning.Charlotte Caldwell’s son Billy was experiencing up to 300 seizures a day until he began using medicinal cannabis.
Although it has been legal in the UK since 2018 doctors are still reluctant to prescribe medical cannabis products on the NHS. This has led to a thriving private market where clinics are charging frantic parents and other patients as much as £2,000 a month.
Charlotte, from Co Tyrone in Northern Ireland, started her campaign six years ago after Billy’s medicinal cannabis which was prescribed by a doctor in Canada, was confiscated at Heathrow Airport. This incident led to a UK law change and Billy, 18, being able to access his prescription cannabis through the NHS in 2018.
However, due to the shortage of standard medical trials, thousands of other parents are still having to go private.
Charlotte is hoping that this breakthrough with the new trials could result in cannabis-based medicinal products becoming more easily available via the NHS. “If the trials are successful, it means no other child suffering with refractory epilepsy will have to endure the long and tortuous journey Billy did to receive life-saving treatment on the NHS.”
Two trials will be carried out, overseen by University College London with funding from the National Institute for Healthcare Research. 500 NHS patients who fit the criteria will take part.
“The news is historic. It’s amazing. I’ve been campaigning for this to happen for years.”
The first suggested trial will study cannabis-based medicines for adults and children living with epilepsies that initiate within the first three years of existence. The second trial will examine patients with hereditable generalised epilepsies who have not had much luck with generic, standard treatment.
Who is running the Study? What Will it Do?
Researchers from UCL and Great Ormond Street Hospital will examine whether the medicines are safe and useful in lessening seizures and whether they impact learning, sleep, quality of life, behaviour, anxiety and stress.
In the future, this data could help products to be approved by the medicines regulator the MHRA and supported by the NHS if they are found to be clinically cost-effective.
Figures currently show that less than five NHS prescriptions for prescription cannabis were issued in the period from November 2018 to July 2022.
Young Epilepsy, who work closely with children and young people living with epilepsy have been quoted as saying:“Measuring the impact of cannabis-based medicines on the lives of children and young people with epilepsy will help clinicians better understand the benefits and risks".
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Liz Filmer
