‘Cannabis-based medicine is not a miracle, nothing is. But for certain conditions, it can work better than more traditionally accepted cures.’

The fight for prescriptions of medicinal marijuana isn’t over

Marina Kim

Marina Kim , a former campaigner for ‘Families 4 Access’, a family centred, advocacy campaign for medicinal cannabis, describes the timeline of change that led to medicinal cannabis becoming legal in the UK – and the ongoing challenges

03 December 2018 13:37

University lecturer Carly Barton has become the first patient to be prescribed medicinal cannabis since the drug became officially legal on the 1 November this year. But while, following a summer of unprecedented change, the door of access to medicinal cannabis has been unlocked in the UK, Carly’s case is an exception rather than a rule. Most doctors are still afraid to prescribe the drug. Some are even putting posters up requesting patients to not ask them for it.

Cannabis-based medicine is not a miracle, nothing is. But for certain conditions, it can work better than more traditionally accepted cures. Epilepsy sufferers from all over the world share detailed accounts of how cannabis-based products help control their life-threatening seizures. MS patients and even cancer-sufferers, who use it to ease pain, have similar tales to tell. Despite this, injecting common sense and compassion into an outdated law, that for many years didn’t acknowledge any medicinal value of this pariah plant, was unnecessarily hard.

The case of Billy Caldwell highlighted the absurdity of the ban. The 12-year-old boy from Northern Ireland was prescribed medicinal marijuana at one of the world’s top hospitals in Canada to control his seizures, but it was confiscated from his mother, Charlotte, upon their arrival at Heathrow on 11 June this year. The truth is that medicinal cannabis kept Billy’s seizures under control better than any other medicine his mother had tried. Even the airport’s officials, who were just doing their job, had tears in their eyes as they were forced by the law to take away his medicine. This is when our campaign to change the law kicked in.

Nobody could have predicted what an emotional ride it would be. I’ve never had a more mind-blowing and heart-wrenching ‘first day on the job’ in my entire life when, swamped by journalists from Sky, the Times, Press Association and others, our team, led by Steve Moore, met the Caldwells at the airport. The emergency press conference at Heathrow’s Sofitel was followed by weeks of working 24/7. Due to quickly developing events that required immediate response, impromptu campaign headquarters were set up all over Central London. There was never a quiet moment, from journalist briefings outside of the Home Office and Charlotte’s meeting with the Minister, to gatherings to plot our next move at Osteria dell’Angolo – a lovely Italian place whose staff were remarkably patient with all the media fuss, hectic phone calls and shouty discussions over the table.

Cannabis-based medicine is not a miracle, nothing is. But for certain conditions, it can work better than more traditionally accepted cures.

From then on, we’d be planning the next steps in pubs with pints of beer and burgers at hand, arranging huddles in quiet corners of hotel receptions, or cooking statements at Carluccio’s as we hastily swallowed our spaghetti – all while the Campaign Director told us to hurry up before our headquarters’ location switched to another place, yet again. Then, suddenly, we are on the plane to Belfast with Charlotte and Billy.

Not every effort pays off, but this time it did. The Home Secretary Sajid Javid broke the spell of prohibition and, finally, from the 1 November, specialists – of whom there are nearly 80,000 in this country – could prescribe medicinal cannabis for several conditions, including epilepsy. This change in law is rightly celebrated, and Billy Caldwell will forever be written in the history books as the boy who helped to achieve what seemed impossible.

Hannah Deacon’s campaign to save her epileptic boy, Alfie, also played a big part in moving the dial forward and so did other families, like Joanne Griffiths and her little Ben, Mahboob Haniffa and his son Ayub, and many others who joined the fight for access. There were many adult patients too – thousands on United Patients Alliance’s books – who tirelessly rattled the cage of restrictions. Each and every one of them made a difference. It wasn’t a matter of just quietly sorting out one kid and moving on – that wasn’t enough. The law had to change, and now it has.

But while this monumental change has to be acknowledged, encouraging doctors to embrace it has proven to be a challenge. Many patients who attempt to get medicinal cannabis report back that convincing their doctors to prescribe it is near impossible, because the current guidelines are so restrictive.

Billy Caldwell will forever be written in the history books as the boy who helped to achieve what seemed impossible.

Professor Mike Barnes, of The Medical Cannabis Clinicians Society, says: ‘The regulations produced by the government are wide ranging and reasonable. The main problem is that the regulations refer to recommendations from the Royal College of Physicians and the British Paediatric Neurology Association, which are inaccurate and suggest cannabis prescription only in extreme circumstances. It would take a very brave doctor to prescribe against those guidelines.’

The National Institute for Health and Care Excellence (NICE) has now launched a series of regular consultations with those they perceive to be relevant stakeholders, including campaign groups and patients, with new national guidelines due next October. But even then, it might be a futile exercise. In the UK, NICE guidelines are only taken as advice and each NHS segment of the country interprets them as they wish. This could turn the chances of patients receiving prescriptions into a postcode lottery, as is currently the case with IVF, where the age up to which it’s allowed varies depending on where people live.

Basia Zieniewicz, Campaigner at Families 4 Access, says: ‘On one hand, we have been met with a milestone in progress for medicinal cannabis. On the other hand, parents battling for access to life-saving medication for their children, alongside nearly 7 million adult patients, feel incredibly let down. We have a new legislation, which isn’t currently being supported by any systems in place.’

We will see where we are in October 2019, when NICE publishes their national guidelines, however, that’s a long wait for people who are sick and want access here and now. In the meantime, while the current guidelines remain restrictive, there is a higher chance to get a prescription if you go to a private doctor, whose decisions are under far less bureaucracy.

Updating the guidelines and educating doctors about the benefits of medicinal cannabis to give them the confidence to prescribe is non-negotiable for a genuine access to cannabis-derived medicine to take place. Selective prescriptions, based on wealth, is certainly not what we fought for.

‘Cannabis-based medicine is not a miracle, nothing is. But for certain conditions, it can work better than more traditionally accepted cures.’