The UK Patient Conference is being held in central London and online, Friday 3 November 2023. It brings together patients, industry, healthcare professionals, charities and members of the public to discuss current issues in the medical cannabis space. Everyone is welcome.
In the lead up to the event, we are shining a spotlight on some of the stories of patients who have had their lives transformed by having access to cannabis-based medicines.
My medical cannabis journey began in 2021, whilst trying to find a treatment for my intractable chemotherapy-induced nausea and vomiting. I noticed that the effects of chemotherapy were much more tolerable when I took cannabis. I asked my oncologist if I could try Nabilone, a synthetic chemical similar to THC, but he decided he couldn’t prescribe it as, out of a group of 60 of his colleagues, no one had ever prescribed it. One oncologist mentioned a patient of his had joined Sapphire cannabis clinic. I had been learning about the availability of a medical cannabis prescription in the UK and this seemed like a good idea.
I joined Sapphire in 2022 and got a private prescription for cannabis flower to vaporise. Getting a prescription made a whole lot of difference in my life. I was now medicating legally with access to 30+ strains of cannabis. Over the course of a year, I tried 25 strains and found 4 or 5 to be effective treatments for my intractable chemotherapy-induced nausea and vomiting. I tried five first-line pharmaceutical anti-sickness treatments – but none were effective. Cannabis flower worked wonders, so I decided to apply for funding from the NHS through an Individual Funding Request. At first, the panel’s recommendation was to try Nabilone, but I found it didn’t work. With the help of doctors at Zerenia clinic, I wrote a second Individual Funding Request for cannabis flower to vaporise. The panel met again on April 20th 2023 (International Cannabis Awareness Day) and decided to agree to funding. I became the first person in the UK to get NHS funding approved for cannabis flower.
My funding application described not just the effect of the cannabis on my intractable chemotherapy-induced nausea and vomiting, but also the improved quality of life as a result. Welcome side effects of medical cannabis include appetite stimulation, energising effects, anti-depressant effects, anti-anxiety effects, plus it helps with sleep. Because of medical cannabis I am able to join in with family life, walk the dog, go to work one day a week, pay tax, contribute to society, and be a guest speaker at this medical cannabis conference. Without medical cannabis I wouldn’t have been able to tolerate chemotherapy, the cancer would have grown, and my life would have been shorter.
Recently, I have become aware of the plight of the families still trying to access cannabis on the NHS for children and young people with intractable epilepsy. I will be standing in Parliament with families on 8th Nov to ask MPs why I get it but they don’t.
There are three conditions for which you can access NHS funding for medical cannabis; multiple sclerosis, intractable epilepsy, and intractable chemotherapy-induced nausea and vomiting. However, even though the children with intractable epilepsy changed the law and made it possible for us all to have prescriptions for cannabis, five years later they are still asking the NHS to pay for it. I have proved there is a way for the NHS to fund a prescription for cannabis. It’s not reimbursement; it’s a personal account with an agreed budget that the pharmacy uses to pay their invoice each month. My cannabis consultant hasn’t been asked to take overall responsibility for my care. I am not pushed into medicating with certain brands or with isolated cannabinoids.
The whole UK cannabis industry owes so much to those families of children with intractable epilepsy. They changed the law. It is appalling they are still unable to access their treatment on the NHS. If one NHS trust can agree to fund medical cannabis via an Individual Funding Request then so can others.
Removing the financial burden of my medicine has improved my health. I am no longer stressed about finding a way to pay for it. The benefits I receive do not cover the family’s food bills; there is no way I could continue to pay for my cannabis treatment, as my savings were running out and, without getting a job, I simply wouldn’t have been able to afford treatment. I feel lucky to have NHS funding for my medical cannabis prescription and hope that others might soon have one too.