SIX years after medical cannabis was legalised in the UK, the mother of a Castlederg teenager with epilepsy has warned the industry is headed towards “disaster” over a lack of NHS availability and quality in the private sector.
Now aged 19, Billy Caldwell from Castlederg is “thriving” and enjoys activities like horse-riding and swimming as well as being a Harry Potter superfan.
He has an NHS prescription for medical cannabis, but his mother Charlotte said major reform in the sector is needed.
As a baby, Billy suffered from a dangerous form of epilepsy that caused prolonged or multiple seizures – as many as 300 a day.
With each one risking permanent brain damage or even death, Ms Caldwell had initially been told he only had months to live.
Her fight to save him led her to the United States, with fundraising and campaigning eventually leading to the use of medical cannabis which brought Billy’s condition under control.
In 2017, he became the first UK patient to receive an NHS prescription for medical cannabis.
After this was not continued, they managed to find a further prescription in Canada but this was confiscated when they returned to London Heathrow in 2018.
A high-profile media campaign eventually led to the Home Office returning the cannabis to Billy as his worsening condition became life-threatening.
The UK legalised medical cannabis that November, but six years later it remains difficult to access through the NHS – with most seeking out private and often expensive prescriptions.
“Billy is doing incredibly well. He’s not just surviving, he’s thriving. He’s going to school, he’s horseriding, he’s swimming,” Ms Caldwell told The Irish News.
“He’s leading a really happy and healthy life. When he was having 300 seizures a day, I felt as if I didn’t know him and was losing him.
“It’s a huge contrast now. I see the little boy that was always there. That little boy was screaming to get out, but the seizures and pharmaceuticals were depleting him on a daily basis.
“The contrast is huge, as Billy’s mummy it is just a real privilege to watch him thrive. For me, the happiness and warmth I feel in my heart.
“He’s healthier now than he’s ever been in his entire life and that’s all a mother can ask for, it’s amazing.”
But after Billy’s near-death experience in 2018 and the subsequent law change, she said it is still not quite the happy ending they hoped for.
“What I believed was going to bring sunshine and rainbows has now turned into dark clouds and rain,” she said.
“If the medical cannabis industry doesn’t reform, it really is headed towards a disaster.
“Six years on, here we are and patients are struggling to access this medicine even via the private sector.”
With around 35 private clinics for medical cannabis in the UK, she said more regulation was needed to ensure proper standards.
“There’s a lot of misinformation, some of these companies are actually tweeting about cannabis-based medicine as if it’s a sweet shop,” she said.
“Patients are offered menus of products to pick from, but that isn’t how medical cannabis should work.
“There’s overgrown promises of it as a miracle cure, which is eroding trust and overshadowing the real benefits.
“There also supply chain issue and most importantly, unpredictable product quality.
“If the industry doesn’t reform, we are headed for a disaster.”
Ms Caldwell has chosen to endorse one private clinic, Releaf, which she calls “a shining example” that is providing a professional standard of care.
The Nottingham-based company is reported to be the UK’s fastest-growing provider of medical cannabis, with an expectation they will have around 40,000 patients in 2025.
Graham Woodward, Chief Operating Officer of Releaf, is a former psychiatric nurse and clinical director.
He said clients were required to have exhausted at least two conventional doctor-prescribed treatments before they are considered.
With registered doctors and an integrated pharmacy, he said the company was promoting “compassionate use of medical cannabis, backed by clinical integrity and tailored care”.
The UK’s Department for Health and Social Care has been contacted for a response on the current progress of research for medical cannabis and the state of the private market.
According to the NHS, medical cannabis remains a broad term for any sort of cannabis-based medicine used to relieve symptoms.
While specific cannabis-products are available on prescription as medicinal cannabis, the NHS says this is only likely to be prescribed for a very small number of patients.
This can include adults and children with rare and severe forms of epilepsy, those with nausea caused by chemotherapy and those with muscle stiffness and spasms caused by multiple sclerosis (MS).
While there is evidence medical cannabis can help certain types of pain, the NHS say there is not yet enough evidence to recommend it for pain relief, but in some cases it may be prescribed as part of a clinical trial.
