We are calling on the Government to fund a simple Observational Trial for those children and young people already on medical cannabis who are currently forced to pay for the medication privately
35,000
children with drug-resistant epilepsy could benefit from medical cannabis
40
children and young people are estimated to be in the cohort prescribed full extract medicinal cannabis for drug-resistant epilepsy, most having to pay privately
4
children receive prescriptions through the NHS, whilst other families are forced to turn to private clinics, incurring an average cost of £15,600 per year
There is now considerable evidence that full extract medicinal cannabis can significantly improve childhood seizures
In 2018, following years of campaigning by a small number of families with children affected by drug-resistant epilepsy, the UK Government legalised medical cannabis under prescription.
One of the foremost campaigners was Hannah Deacon, whose son, Alfie, then aged 6, suffered up to 150 potential life-threatening seizures a week. They tried a range of drugs, none of which worked and all of which had severe side effects. Medical cannabis was the only medicine which worked for Alfie, who is now effectively seizure-free. Alfie was one of the very first children to be prescribed medical cannabis and was fortunate to have that prescription on the NHS.
Hannah continued to campaign for wider access to more children affected by drug-resistant epilepsy, nearly all of whom are still forced to pay privately for access. The monthly cost of private prescriptions is well over £1,000, driven by the NHS’s continued reluctance to prescribe even to those in greatest need.
Tragically, Hannah lost her life to cancer in 2025. This campaign is, in large part, in memory of Hannah, who we know cared so deeply about this issue and wanted other families to have the benefit of an NHS prescription for this life-changing medication.
To understand the impact of drug-resistant epilepsy on children and their families, please click the link below.
We are calling on the Government to support children and young people on private prescriptions for drug-resistant epilepsy, still unable to access medical cannabis on the NHS, by establishing a funded observational trial. Whilst other sophisticated trials are planned, these will take years and are unsuitable for those already on medication.
A message from Tonia Antoniazzi MP
Since being elected, Tonia has been a passionate campaigner on medical cannabis. As Chair of the APPG for Cannabis Under Prescription, Tonia has continued pushing for improved access to medical cannabis on the NHS.
Watch this short video, to hear why she is supporting The Hannah Deacon Campaign for Access to Medical Cannabis