"Why is it still so hard for children like my son Billy to be prescribed medicinal cannabis?" - By Charlotte Caldwell
When my 12-year-old son Billy and I left our home in the tiny village of Castlederg, Co Tyrone, last June, I had no idea of the impact the journey ahead would have. A few days before, my GP had informed me that he could no longer prescribe the only medicine that allowed Billy to live a seizure-free life, medicinal cannabis he had initially been given by a doctor in Los Angeles. I had no choice but to do what I could to get Billy his medicine back.
Five months later, on November 1 2018, new rules came into effect that allowed hospital doctors to legally prescribe medicinal cannabis under certain, very restricted, conditions. My campaign had, I hoped, helped chart a new course for potentially millions of people.
However, as of today, not a single NHS patient has had a prescription approved. Reading clinicians’ submissions to the Health and Social Care Select Committee, which is meeting today, it is clear why. Consultants are unconvinced by the clinical evidence and, in the UK, there is almost no experience of the therapeutic benefits of cannabis. This must change.
To understand why, consider my son Billy’s story. After losing access to his medicine, I travelled to Canada and, at Sick Kids Hospital in Toronto, I was prescribed a new cannabis-based medicine for Billy. Just two days later, however, on June 11, 2018, it was confiscated by customs officials at Heathrow’s Terminal 5. Inevitably Billy’s seizures returned, he was admitted to Chelsea and Westminster Hospital, and our every move became a breaking news story.
Thankfully, we were able to attract political attention. In the early hours of June 16 2018, the Home Secretary agreed to have the confiscated medicine ferried from the vaults of the Home Office into the hands of Billy’s clinician after doctors stated that his condition had become life-threatening. But the likes of my son should not have to rely on the whim of the authorities to get the help they need.
So it is urgent that clinicians be given the confidence to prescribe where necessary. Since passing the new rules, the Government has, to its credit, committed funds for research and training programmes for doctors and is undertaking a review of the efficacy of cannabis-based medicines. But there is more that must be done. Ministers must not treat what is currently being undertaken as part of the normal process of considering novel medicines. An enormous number of people have already chosen cannabis for relief from chronic pain, for use during palliative care or to contain our children’s seizures.
Those who are acquiring cannabis in an unregulated and increasingly unpoliced black market are doing so with the Chief Medical Officer’s endorsement of medicinal cannabis ringing in their ears. Society has moved ahead of politicians and policy makers, who are now playing catch-up.
This cannot be treated as a perfunctory bureaucratic exercise. Ministers need to ensure that public funds are deployed to speed up doctors’ education and to escalate the accumulation of trials data. Medical school curricula need to be updated. Pleas from some demanding that Royal Colleges revise their current guidelines are almost bound to fall on deaf ears. But we know how we can persuade them: that compelling and all-important trials data. This is not about what we, the families, want to say: it is about what the doctors need to see and hear.
The demand for legal cannabis as a medicine is not going away. The Government, the NHS, doctors, researchers and cannabis companies need to work together to alleviate wholly unnecessary human suffering.