A young man who was having 800 seizures a day has had none for three years after being prescribed “miracle” medical cannabis.

Billy Caldwell’s life has been transformed by the treatment after medics had warned his severe epilepsy could be life-threatening. Billy, now 20, began taking cannabis oil in September 2016 and would later force the UK government into changing the law.

This came after his life-saving medication was confiscated at London Heathrow as he returned from Canada in June 2018. He was later admitted to hospital after suffering a series of fits.

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His determined mum Charlotte forced a change in the law and Billy got his NHS funded prescription cannabis reinstated in 2018. After first suffering prolonged seizures aged just four months he is now living a normal life, enjoying horse riding and swimming.

Charlotte, from Northern Ireland, said: “At last I have Billy back. When he was having hundreds of seizures, it was difficult to do anything. Billy could hardly stand or talk, Now we are going out. Billy goes horse riding and is living a near normal life. I never thought he would go seizure free for three years. It’s a miracle.”

While celebrating the milestone, Charlotte is warning that medical cannabis access in the majority of cases is too expensive, inconsistent, and overly reliant on private clinics.

She said: “Having reduced his seizures from 800 a day to zero over three years, Billy is not just surviving but thriving – a remarkable achievement given that doctors believe he would not live to see his first birthday.

“Some private prescribing shows that the specialist oversight of the industry is inconsistent, while marketing practices can be confusing to both patients and law enforcement. These issues suggest a significant number of prescriptions may be closer to recreational use, an area regulators have raised concerns about.

“It’s yet another sign that demand already exists, regardless of legality. People prefer regulated access over illicit supply, but the current framework is misaligned with real-world use. The government must act urgently to take recreational prescribing out of the medical sector.”

The current framework for legitimate medical cannabis prescriptions in the UK began with the then home secretary Sajid Javid issuing Billy with the UK’s first licence to allow administration of medical cannabis in June 2018.

Javid also launched an inquiry into the potential benefits of medical cannabis, leading to the rescheduling of medical cannabis in November of that year and allowing expert doctors to legally issue prescriptions for cannabis-based medicines.

While these changes have benefitted more than 50,000 medical cannabis patients in the UK, only a handful of NHS-funded whole plant prescriptions have been issued, with almost all prescriptions happening in the private sector.

As many as 2.6 million adults in the UK will have used cannabis recreationally in the last year, according to estimates based on ONS figures, with illegal cannabis worth £2.6bn a decade ago, according to the most recent credible estimate.

Charlotte said: “Providing adult recreational users with a legitimate means of accessing cannabis will create a stronger separation between recreational users and medical users, strengthening the ability of the NHS and private clinics to provide medical cannabis access to some of the most vulnerable, chronically ill members of our society.”

At the 420 event in Hyde Park - a cannabis rally and celebration - on April 20, Charlotte will launch TRACD, inviting governments across the UK and British crown dependencies to commit to a regulated recreational pilot into adult use of cannabis.

If given the go ahead, these pilots could provide participants with regulated cannabis products and conduct health monitoring, gathering fit-for-purpose data to give governments the necessary evidence to design a modern, progressive cannabis policy.

Charlotte said: “TRACD aims to correct the mismatch between how medical cannabis policy was intended to work and how it is working in practice.

“If successful, we can finally give medical cannabis patients the standard of care they deserve, while ensuring that recreational adult users can access cannabis safely and legally, rather than supporting a billion-pound illicit market.”