In 1928, following centuries of cannabinoids being used in medicine, the UK made the decision to reclassify cannabis as an illegal substance based on its psychoactive effects, instead opting for other equally psychoactive compounds as legitimate medicine. Examples include anaesthetics, analgesics, anticonvulsants and anti-Parkinson drugs as well as medications used to treat neuropsychiatric disorders, such as antidepressants, anxiolytics, antipsychotics, and stimulant medications.
Though the House of Lords science and technology select committee first recommended legalising cannabis for medicinal use in 1998, it still took until 2018 for patients to get legal medicine into individual patients’ hands. That was a very long twenty years for patients who, in the interim, had to rely on pharmaceutical drugs with often devastating side effects.
Almost a year on from access being initiated, patients are no further along in their quest for legal medicine. The Clinical Interim Guidelines confirm that there is not enough evidence for recommendations due to the plant’s historical illegality. The guidelines also state that a doctor is free to make a clinical decision to prescribe. However, following that clinical decision, the prescription goes to a funding panel whose first task is to tick a box that states that there is sufficient evidence to fund this medicine. This system was never going to work.
Private clinics in the UK are now very actively prescribing cannabis-based products to patients – this is possible due to the fact that they can be more free to make independent decisions and they do not need to report to trusts or funding panels.
This is creating a two-tier system in the UK, whereby the wealthy can be classed as patients and the less so are still classed as criminals living in fear of legal action. These include some of the most vulnerable people in the UK, and they are in fear of the very people who are supposed to be there to protect them.
I work for a patient advocacy organisation, the United Patients Alliance, and we support many thousands of patients for whom cannabinoids have proven to be a safe option, and for whom the fear of arrest for simply maintaining their health is all too real.
Personally, I live with several auto-immune conditions: severe and treatment resistant neuropathic pain following a stroke in my 20s, and fibromyalgia. I have tried every pharmaceutical drug for pain management, including morphine and fentanyl but not only did these drugs not control my pain, they ruined my quality of life and left me completely debilitated. Cannabis however has allowed me to return to some level of functionality. It is the difference between me needing assistance cutting up my food and me being able to return to part-time work.
My NHS doctor wrote me the first-known prescription for herbal cannabis in the UK since the rescheduling in November. This prescription would have superseded my private one, which was for two kinds of Bedrocan flower. It was unanimously rejected by Brighton MGG (Medical Governance Group) due to insufficient evidence. I am now left with no other choice than to return to being a criminal, but I am a criminal only because I cannot maintain a £1,400 a month prescription.
However, the question remains, if we have patients successfully treating themselves while we debate the issue, is it really in the public’s best interest to prosecute them?
On 29 March, I wrote a letter to my local Police Crime Commissioner in Sussex stating that I was unprepared to go back to heavy pharmaceuticals or a wheelchair while the issue is debated. It states that I am going to be cultivating the exact strains that I had been prescribed (25g of Bedrocan and 25g of Bedica per month).
On 11 April I walked in to my local police station with a signed disclosure of the whereabouts of my garden, requesting amnesty and immunity from prosecution if I maintained under nine viable plants, which is their own current threshold for gardens that they qualify as ‘for personal use’.
Attached to that disclosure was a proposition to collaborate on a pilot scheme dubbed Carly’s Amnesty that would kick start an access route, starting with the those indications addressed in the CIG and NICE guideline scope, including chronic pain, intractable nausea and vomiting, spasticity and severe treatment-resistant epilepsy.
Patients signing up would need to meet the following criteria: Have a diagnosed medical condition or symptom listed under the CIG guidelines; are unable to afford a private prescription; and would consider growing their own supply of medical cannabis.
This scheme is intended as an interim and temporary measure to help critical patients in serious need of medical treatments currently unavailable to them. It is initially being run with a small group of patients to test its efficacy and to streamline its use by local authorities. It can also be seen as an olive branch, an offer to facilitate the rebuilding of trust between the patient community and the police.
The amnesty would take the form of a register, held by the organisation, to which those registered are permitted to have small indoor gardens. The authorities would have access to this data in the event of a complaint and would then be able to arrange an inspection to ensure that a patient is compliant. If so, the plants would stay in situ and no legal action would be taken.
In my opinion, it should be a patient’s right to choose growing a plant over taking addictive pharmaceuticals with life-changing side effect profiles. It is also their right to make the choice not to participate in criminal markets that perpetuate drug or human trafficking, or offer potentially unsafe products.
Carly’s Amnesty, though, is not a complete solution. A Spanish-style model with social clubs, education, community support and co-operative programmes would be the ideal ‘end point’ for this type of scheme. However, first we need to open the door for access, if that needs to be taken in baby steps, then this solution is the first one.
The website has already gathered many registrations and that number is growing hourly. Patients are reassured upon registration that their data will not be shared with their local authority until that force has joined the scheme, granting them immunity.
The police have displayed an interest in allowing such a scheme to exist and I am working with them alongside human rights lawyers, academics, medical professionals, think tanks and government departments to negotiate the particulars.
We need to stop saying we can’t do this because ‘that’s not how it’s always been done’. Because this can be done – all it takes is some common sense and the promise from authorities, of doing exactly nothing.
Carly Barton is deputy director at patient advocacy group United Patients Alliance