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.”
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.”
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.”
My daughter’s seizures reduced by 95% on medical cannabis – why is it not available on the NHS?
Clover Carkeet’s family have had to fight for her to maintain access to the treatment
Three-year-old Clover Carkeet’s seizures have reduced by 95 per cent with medical cannabis – so why has her family had to fight so hard to maintain access to it?
Clover had her first seizure at just 12 weeks old. Doctors diagnosed her with infantile spasms, a ‘catastrophic’ form of epilepsy that is among the most brain-damaging conditions of its kind.
Early signs of the condition were discovered when her mum, Emily Carkeet, was 30 weeks pregnant.
She was told that Clover was missing the part of her brain that connects the left hemisphere to the right, known in medicine as the corpus callosum.
Seventy five per cent of newborns with the condition will grow up to live completely normal lives, but sadly Clover is among the minority that develops neurological issues from early childhood.
Like many children diagnosed with rare forms of epilepsy, Clover was started on a heavy dose of steroids which she took for six weeks.
“It was a really awful time for us,” Emily recalls. “They made her extremely poorly. She was so upset and angry. She was basically just staring into space.”
After the steroids, Clover was started on a strong antiepileptic drug called vigabatrin, with her enjoying five months without seizures. The freedom gave her the chance to develop, and even learn to crawl.
But it wasn’t just the vigabatrin that was aiding her recovery, Emily believes.
When Clover was four months old, her parents began giving her tiny doses of over-the-counter CBD oil called Hayleigh’s Hope. In the early days of Clover’s diagnosis, Emily had connected with hundreds of families whose children suffered from similar conditions.
“I was always searching for the answers for Clover,” Emily says.
“I found that the children who were taking some form of CBD all seemed to be developing fairly normally. Their seizures were well controlled and they were spending less time in hospital.”
She continues: “Every time we increased her dose she would learn something new, physically her development was ahead of some of her neurotypical peers, she crawled at nine months and walked at 13 months, all these things that they said she wouldn’t do.”
But after five months Clover relapsed and developed something called focal seizures. Despite increasing her pharmaceuticals, her condition worsened until she was having as many as 100 seizures a week.
95% reduction in seizures
At this point, Emily and her partner, Clover’s father, Spencer, were at a “crossroads”. Either introduce more pharmaceutical medication or pursue a CBD prescription.
“It became abundantly clear that what we could buy over the counter just wasn’t strong enough for her,” Emily says.
“We were at a crossroads really; we could either add more meds… but we had made a vow in those early days that that was not what we wanted for her. We wanted to give her a chance to have a quality of life, and we believed the best chance of that was by staying as far away from heavy duty drugs as possible.
“That’s when we decided to go down the prescription route.”
Clover met criteria and was able to access a legal prescription for medical cannabis in August 2020. By November, her seizures had dropped to just three or four per week – a 95 per cent reduction.
The following April, the family added the THC-containing oil Bedica to Clover’s course of medication, which is when the number of seizures fell “dramatically”.
“THC was the game-changer for her. She was sometimes going 10 days without a seizure,” says Emily.
“The biggest doubt for me was that THC might have detrimental behavioural and developmental effects, it worried me, but less than having her on a benzodiazepine, wired up to machines in hospital. As her mum I’ve always followed my gut instinct.”
Battling the BPNA
Despite Clover’s parents seeing a huge improvement in her condition and quality of life, the family faced losing her access to the medicine when her prescribing doctor was reported to the General Medical Council (GMC) last year.
Although she doesn’t know the details of how it came about, the complaint was made shortly after Emily wrote to Clover’s neurologist in the NHS outlining her daughter’s positive response to cannabis-based medicines.
The complaint, believed to have come from the British Paediatric Neurology Association (BPNA), centred around Clover’s age as at the time, at 17 months old, she was the youngest child in the UK to be prescribed the medicine. It stated that the doctor was not a neurologist and therefore should not be prescribing.
BPNA guidance claims that cannabis medicines can only be prescribed in children with epilepsy by a paediatric neurologist. But this is not stated anywhere in current legislation.
The case ended up being dismissed, with the GMC’s independent medical expert quoted during the review as saying the BNPA position is “probably not in the best interests of children”.
“Doctors sign a Hippocratic oath then they don’t do what’s best for their patients. It’s very negligent to deny these kids a medicine that clearly works for them,” says Emily.
“What I don’t understand is this necessity to throw so many drugs at them just because they’re licensed.
“In my opinion – and logic should rule here – if a child finds something that works, why would you then force them to go back and try all these other things that may be detrimental to them? I find this concept of using cannabis as a last resort absolutely crazy.”
Emily believes that the BPNA guidance on medical cannabis is part of the reason why NHS access is so limited for children with epilepsy.
“They complained about Clover and made no effort to speak to me about how she was doing at all. They don’t listen to us as parents, even though, when you’re a parent of a child with epilepsy, you become the expert on their condition,” she says.
“It’s just so wrong on so many levels.”
A “constant juggling act”
Clover is doing well developmentally and starting to communicate more as she reduces her prescription drugs, something Emily puts down to the medical cannabis.
“I had read about neuroprotective benefits from cannabis and genuinely think that because she’s had it in her life since she was so young, it’s probably protected her brain,” she says.
“We’ve never seen any regression from any of her seizures and I honestly think it’s the cannabis we have to thank for that.”
She attends nursery and Emily has been able to return to work. Something which has been a lifeline in funding Clover’s prescription, which currently costs around £1,000 a month.
Emily and Spencer are able to fundraise, but still pay £600 each month out of their own pockets. Emily describes the situation as a “constant juggling act”.
“I feel an extreme pressure to be working more than I am because we have this prescription to pay for,” she says.
“The person who suffers from this is Clover because she doesn’t get as much of her mum as she needs.”
But despite their struggles, Emily feels lucky they have access to the treatment when so many families in the UK are unable to obtain a prescription even privately.
There is currently only one paediatric neurologist prescribing for children with epilepsy in the UK, and he is not currently taking on any new patients.
“There are so many parents who are desperately trying to get this medicine, because they see the results,” she adds.
“It’s an injustice that they can’t access it.”
Cancer survivor reveals how medical cannabis “saved his life”
Barry Freeman swapped his pain medication for medical cannabis.
A US cancer survivor has shared how medical cannabis helped him manage debilitating pain and stop his usage of multiple medications.
Texan cancer survivor Barry Freeman – who also suffers from PTSD – introduced medical cannabis into his treatment plan in 2019 and has since eliminated the consumption of dozens of pain pills while experiencing a drastic reduction in symptoms with no side effects.
In 2015, a time he describes as “the worst year of his life,” Barry lost his son and received a stage-four colorectal cancer diagnosis.
After being initially turned away by multiple doctors due to his terminal diagnosis, Barry underwent 37 rounds of chemotherapy and radiation treatment. He finally achieved remission in 2017 but his cancer treatment’s lasting effects combined with emotional distress led to continued symptoms of chronic pain, anxiety and panic attacks.
“I was in a very dark place that year. Living with cancer and losing my son caused severe depression on top of a barrage of physical symptoms that made my life miserable,” Barry said.
Barry then sustained a debilitating shoulder injury in 2018, exacerbating his condition and leading to a prescription of 12 pain pills per day. It was then his physician recommended medical cannabis as a treatment option.
“Medical cannabis saved my life,” he continued.
“I felt more relief than I’d ever felt through any pain pill. I could feel the calming effect of the medication come over me. I feel better than I did at 45-years-old. Emotionally and physically, it’s extraordinary to be here now and feel this way after being so sick.”
The Compassionate Use Program (CUP) was enacted by the Texas legislature in June 2015, allowing for the first legal use of medical cannabis products by patients with intractable epilepsy.
It was not until the program expanded in 2019 to include terminal cancer, all forms of epilepsy, autism, multiple sclerosis, spasticity, ALS and hundreds of neurodegenerative disorders that patients like Barry became eligible to access medical cannabis.
Following the 2021 session, the programme expanded to include all cancer patients and those suffering from PTSD.
Barry was provided with cannabis by Texas Original Compassionate Cultivation , a licensed medical cannabis producer that works across the state.
Morris Denton, CEO of the company, believes that more still needs to be done to improve access for patients in Texas.
“Barry was ineligible for life-altering medication for almost four years after his initial diagnosis,” Denton said.
“No one should have to endure a delay in treatment for symptoms that medical cannabis is proven to relieve. This is why continuing to expand the Compassionate Use Program matters.
“There are thousands of Texans who can and should be benefitting from the power of medical cannabis now and our team is dedicated to expanding the CUP to include each of them.”
Growing “appetite” for medical cannabis among UK clinicians
Over 300 health professionals have signed up to learn more about medical cannabis.
Over 300 health professionals have signed up to learn more about medical cannabis in the UK since 2019.
Just two and half years after its launch, the Medical Cannabis Clinicians Society (MCCS) now has revealed it now has over 300 members, as it prepares to launch a series of in-person events this year.
Over 300 clinicians, including specialist consultants in a wide range of specialisms, GPs, nurses and allied health professionals, are now active members of the society, sharing best practice, learning from each other, and accessing regular expert support.
Bosses say this growth demonstrates the “appetite” of health professionals to learn more about this “life-changing” medicine.
Throughout 2022, the MCCS executive committee is planning to hold five in-person events across the UK, offering attendees a practical introduction to medical cannabis and CBD.
The first events will take place in Manchester on Thursday 12 May and Belfast on 1 June, followed by sessions in Edinburgh, Cardiff and London before the end of the year.
Further events are expected to take place in Liverpool, Newcastle, Bristol, Birmingham and Dublin in 2023.
Open to clinicians, medical students, scientists, researchers, professionals and patients curious about medical cannabis and the current state of prescribing, evidence and availability in the UK, the events will take place from 6.30pm for two hours, with networking and a panel Q&A for attendees following the speakers.
Prescribing doctors from the executive committee will be joined at each event by society chair, Professor Mike Barnes, as well as medical cannabis patients.
Sativa Learning’s Ryan McCreanor and Volteface’s Katya Kowalski, will also present education opportunities and research insights.
Professor Mike Barnes, chair of the Medical Cannabis Clinicians Society said: “The growth we have seen in our membership over the last two and a half years demonstrates the appetite the UK’s clinicians have to learn about this life-changing medication.
“With significant restrictions meaning that only Specialist Consultants can prescribe, little to no cannabis education for medical students, and the fact that medical cannabis is only available via privately prescribing doctors, the number of clinicians choosing to educate themselves and access support via the Society should be noted by leaders in the health service and in Government.
“Our programme of events, which will see us visit Manchester, Edinburgh, Belfast, Cardiff and London this year, and Liverpool, Newcastle, Bristol, Birmingham and Dublin in 2023, are a fantastic opportunity for clinicians and medical students particularly to learn the facts about this treatment and practical steps to prescribing.”
Hannah Deacon, executive director of the Medical Cannabis Clinicians Society, added: “The Medical Cannabis Clinicians Society believes that everyone who could benefit from medical cannabis should have access to it. Our mission is to give clinicians access to evidence, training, expert guidance, peer support and licensed product information so they can prescribe life-changing medical cannabis treatments to all patients in the UK, on the NHS.
“The Society is an expert-led, independent, not-for-profit community, dedicated to bringing this safe, legal and effective medicine to people living with chronic conditions.”
The first event will take place at The Midland Hotel in Manchester at 6.30pm on Thursday 12 May.
Dr Niraj Singh, consultant psychiatrist from The Medical Cannabis Clinics and executive committee member of the MCCS, will share his experience of becoming a medical cannabis prescriber.
Prof Barnes will explore the history and evidence for medical cannabis.
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