Labour MP and long-time medical cannabis advocate, Tonia Antoniazzi, has called on the government to fund a new observational trial to support children with drug-resistant epilepsy, who are still unable to access medical cannabis on the NHS.
Antoniazzi is spearheading a new campaign launched in memory of Hannah Deacon, the mother of Alfie Dingley, who campaigned for the legalisation of medical cannabis in 2018. Hannah died of cancer last year, aged just 45.
Her high-profile campaign led to Alfie, who has a rare and severe form of treatment-resistant epilepsy, becoming the first person to obtain a full licence for the prescription of medical cannabis through the NHS in June 2018.
Later that year, on 1 November, the government announced the rescheduling of cannabis-based medicines, making them legal to prescribe by doctors on the specialist register.
Almost eight years on, an estimated 80,000 patients are now able to access medical cannabis through private clinics in the UK, but only four children (including Alfie) receive prescriptions through the NHS, whilst other families face costs of around £15,000 per year.
Hannah Deacon died last year after a short battle with cancer.
An “unacceptable burden”
During Prime Minister’s Questions on Wednesday, 4th March, Antoniazzi, MP for Gower, asked Keir Starmer to commit a “modest” £2 million for an observational trial to relieve these families of this “unacceptable burden”.
“Many families are still paying around £1,300 a month for a treatment that is already legal to prescribe,” said Antoniazzi, who has previously accompanied families travelling to the Netherlands to access medical cannabis.
https://www.instagram.com/reel/DVeMz8tF9Zp/?igsh=cDM5bXJoazV4YmYy
The proposed study would run alongside two previously announced NHS-funded randomised control trials (RCTs) on medical cannabis and epilepsy, which are being conducted by researchers at UCL. It would allow children who are currently prescribed the treatment privately to continue accessing it at no cost, while real-world data is collected.
The research team is said to have confirmed that an accompanying observational trial would be a viable option. However, the Prime Minister failed to commit to the additional funding, instead pointing to the £8 million already invested in RCTs.
“Hannah Deacon’s campaign for her son, Alfie, was remarkable, and I know how much she’s missed,” Starmer told the House.
“We are investing £8 million in clinical trials on cannabis based medicines for conditions like drug-resistant epilepsy, and I want to see patients accessing safe, effective medicines and new treatments as quickly as possible.”
The RCTs were first promised in 2019 following a review commissioned by former Health Secretary Matt Hancock. Although finally announced in 2024, they have since been delayed again.
Campaigners warn that these will take several years to complete and are not suitable for those children already prescribed medical cannabis, for whom the treatment has already significantly reduced seizures, where all other options have failed.
“While I understand the government’s reticence to move towards any kind of drug reform… this is a titrated drug, and is widely accepted in other countries around the world,” Antoniazzi tells Cannabis Health.
“Why we are making it difficult for these families to access a prescription that makes their children’s lives so much easier baffles me.”
“We made her a promise we wouldn’t give up”
Even after Alfie secured his NHS prescription, Hannah continued campaigning to ensure other families could access the same treatment. Now, Antoniazzi and other parents say they will continue that fight in Hannah’s name.
“What drives me is Hannah, and how she fought for all families and how she fought for their children,” she adds.
“She was a really special woman, and her family wants her legacy to remain.”
In a post on her Instagram, Emma Appleby, who campaigned alongside Hannah on behalf of her daughter Teagan, said: “Although Hannah’s son had an NHS prescription, she continued to fight and stand alongside other families like mine who still had to battle… We all made a promise that we wouldn’t give up.”
https://www.instagram.com/p/DVTZce3CMr_/?igsh=ZjYzc2M3b3Z2NjZ3
Medcan Family Foundation commented: “Hannah was a tireless advocate and a driving force behind progress for families fighting for access. She refused to accept a system that left children waiting without answers… Her legacy continues in this new campaign.”
You can support the Hannah Deacon Campaign for Access to Medical Cannabis by emailing your MP and signing Hannah’s petition here.
