By Emily Ledger
The families of children with severe forms of epilepsy held a protest yesterday, criticising access to medical Cannabis in the UK. Cannabis was rescheduled in November 2018, allowing for specialist doctors to prescribe medical forms of the drug through the NHS.
The National Institute of Health and Care Excellence (NICE) finally gave its recommendation for two medical Cannabis products in November 2019 – a year after the rescheduling. However, the number of patients granted a prescription for the medications through the NHS remains shockingly low.
Around 20 families of severely epileptic children took to Westminster to protest for change. Their aim, an official judicial review of NHS rules and NICE guidelines. Currently, NICE recommendations only cover the use of licensed medical Cannabis products for two conditions – Specific forms of treatment-resistant epilepsy and multiple sclerosis.
Despite the products being technically available through NHS prescription, the vast majority of families have gained access to medical Cannabis through private clinics. Private prescriptions can cost families up to £3,500 per month.
There are only two epilepsy patients in the UK who receive repeat prescriptions through the NHS for their Cannabis medications. Hannah Deacon, whose son Alfie is one of those with a prescription, has become a full-time advocate and campaigner for improved access to the products for other patients.
In an interview with the BBC, Hannah Deacon addressed Prime Minister Boris Johnson:
“Don’t just allow my son to have this access. Do the right thing, you can do that today. Allow funding for these families and then we can sit round a table and make access available to all.”
It is believed that there are up to 2,000 patients with rare forms of epilepsy (Lennox-Gastaut, PCDH19, and Dravet syndromes) who could benefit from improved access to medical Cannabis products. Patients like four-year-old Eddie Braun, whose parents pay £923 for his private Cannabis prescription.
After trying various epilepsy medications, Ilmarie and Alex Braun claim that Eddie’s Cannabis medication offers the most effective seizure control. Another parent, Elaine Levy, claims that she has had no choice but to sell her home in order to pay for her daughter’s medical Cannabis medication.