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“It’s been a real game-changer” – Patients speak on the benefits of medical cannabis

The panel was part of Medical Cannabis Awareness Week, which runs from 1-7 November.

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Patients: A collection of brown bottles containing CBD oil, cannabis and a green cannabis leaf on a wooden surface

Patients spoke about the side effects of prescription drugs and the improvement in their quality of life since starting cannabis-based medicines, as part of Medical Cannabis Awareness Week.

The panel was organised by the patient advocacy group, PLEA (Patient-Led Engagement for Access) as part of Medical Cannabis Awareness Week which runs from 1-7 November to acknowledge that it has been three years since the legalisation of medical cannabis.

The discussion on the different conditions that cannabis may help included patients and doctors. The wide variety of conditions included Attention Deficit Hyperactive Disorder (ADHD), endometriosis, anxiety, Autism Spectrum Disorder (ASD), Parkinson’s Disease, fibromyalgia among others.

The panel, led by David Johnston from PLEA’s patient working group, included fellow members Jack Pierce, Noel Brown and Kayleigh Ross. They were joined by Jessica*, the founder of the blog, The Endo Monologues and Dr Wendy Holden, a pain specialist.

Patients and side effects.

The panel began with a group discussion on the different conditions and medications that the patients had been prescribed. As cannabis is often the last medication prescribed for most conditions, they had all experienced a variety of drugs including opioids.

Jessica, who chose to remain anonymous due to her role in the education sector, had experienced debilitating pain which has left her bedridden around the time of her period due to endometriosis. She described the clarity she experienced from cannabis and described it as a ‘game-changer.’

She said: “I’ve been a medical cannabis user for six months but during that, I’m now completely off all pharmaceutical drugs. A lot of my endometriosis pain sits in my sciatic nerve so it will travel down to my legs but I’m at a point now where I just have to use medical cannabis and that is sufficient to manage my pain.

“I’m not continuously in a medication haze and I’m actually very clear as I have clarity. It’s had a knock-on effect on my other conditions too, I suffer from obsessive-compulsive disorder (OCD) so that seems to have settled now because of the cannabis. For me, it’s been a real game-changer.”

Patients: A collection of CBD bottles and cannabis leaves on a white background

Jack also explained the irony of being prescribed stimulant medications for ADHD which can often have dangerous side effects before being given cannabis-based medications. He also highlighted that his other conditions could sometimes be triggered by stimulant-based medications such as anxiety.

“The standard treatment for my conditions that I’ve tried revolved around therapies and medications. As a result of the multiple conditions, anxiety, ASH, ADHD, the medications have always been SSRI inhibitors and now, prescribed amphetamines. I’ve had a series of adverse effects to all of the mental health medications in the past which is perhaps why I went undiagnosed for autism and ADHD for so long because the medications were not suitable for those conditions,” he said.

“They often left me really withdrawn, having night terrors, stomach upsets and I couldn’t function at all. The Elevanse that I’m now prescribed, which is prescribed amphetamines for ADHD is beneficial in some areas but comes with a load of risks to my health. I’m not sure how long I want to endure those risks.”

Jack said he had been on Elevanse for two weeks before doctors wanted to increase the dose he was taking. “I’m a person who has never used prescribed amphetamines. Why do I, within two weeks of being prescribed it, have to jump up?”

Kayleigh Ross agreed with Jack that for her, it was easier to get opiate-based medications. She also acknowledged the role the pandemic had in introducing telemedicine.

She said: “It’s the same issue with opiate-based medications as I can easily go to the GP and get some form of opiate-based medication but to be able to be prescribed medical cannabis, you’ve got to jump through so many hoops. If I go to the doctor now, I could get given morphine which I don’t want because it’s addictive. The barriers to access are a huge issue.”

Patient locations

She added that her rural location of an island in Scotland made access even harder. “The clinics are all in England. I live on an island and it costs hundreds of pounds to get off the island, let alone travelling the whole length of the UK to get down to England. It costs a lot of money and it would never have been possible if it wasn’t for the pandemic and Project Twenty21 for subsidising costs.”

Host, David Johnston also touched on how telemedicine had meant he could switch to medical cannabis to help manage his conditions which include fibromyalgia and ASD. He is also based in Scotland.

“The barriers to access is a huge issue. It’s quite ironic, but if it hadn’t been for the pandemic and the growth of telemedicine then I am not sure if I’d ever have been able to approach it and become a patient.”

The panel also touched on the issue of the police and safety while travelling with their medication.

Jack spoke about the worry of having cannabis-based medications while travelling. Patients are advised to leave their medication in the original container from the pharmacy as further proof of their prescription. This may mean that if a patient is stopped, they risk having all, not some, of their medication, seized.

“I worry about taking my medications anywhere in case I get stopped,” he said. “I am told I have to keep all my medication in its original packaging with all of it in there. That is a considerable amount of cannabis to be having on me. It doesn’t look like a good scenario. It’s constantly at the back of my mind.

Patient quality of life

Kayleigh explained that in comparison to pharmaceuticals, medical cannabis had a positive effect on her life. “You might get a little bit more sleep or eat more but to me, because I’ve had an eating disorder, eating more is a good thing.”

David said that for him, medical cannabis had cleared the brain fog often associated with fibromyalgia. “For me personally, it cleared up brain fog. I’m actually more clear-headed after I’m able to medicate.

Jack elaborated on brain fog and ADHD. “With ADHD, the head just gets so rushed with so many thoughts that you can’t pick them out so it gets so confusing and overwhelming. When you medicate, they just fall into place and you can focus on one. It gives you that structure again otherwise it gets completely too much and overwhelming for any person.”

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