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‘Crisis’ in paediatric access to medical cannabis forcing parents to black market

There is currently only one consultant who specialises in paediatric epilepsy prescribing cannabis in the UK

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Paediatric epilepsy

Experts have warned that the lack of paediatricians willing to prescribe cannabis medicines in the UK is reaching crisis point, leaving children’s lives at risk and forcing parents to turn to the illicit market.

The lack of pediatric neurologists willing to prescribe medical cannabis in the UK is forcing parents to turn to desperate measures, according to several campaigners and clinicians in the industry.

There is currently only one consultant who specialises in pediatric epilepsy prescribing cannabis-based medicines in the UK and actively taking on new patients.

As there are no pediatric prescribers currently enrolled in Project Twenty21, parents and carers don’t get the costs of their prescription subsidised, costing them around £2,000 a month.

“It’s the children that changed the law and suddenly they’ve been forgotten about,” says Matt Hughes, co-founder of Medcan Support, a UK charity aiming to educate and support parents in accessing medical cannabis. “I see it as pediatric access in crisis because I can’t see it getting any better.”

Parents of children with epilepsy

Through Medcan Support, Hughes is contacted by dozens of parents of children with epilepsy, who are willing to do anything to access cannabis – even turning to illicit means.

“A lot of parents aren’t transparent about using it illegally, but we know there are some,” Hughes continues. “Those who want access are going to use cannabis wherever the source and currently, they are left to the CBD market or the illicit market, where there’s no clinical oversight.”

While Hughes is careful not to disclose much, there are reports of parents giving children Rick Simpson Oil, which is po

tent in THC, known to cause seizures if taken in too high of a dose and without enough CBD to counteract its effects.

Parents: Cannabis activist Matt Hughes and his family

Matt Hughes, with his partner Ali, and son Charlie.

“Parents are trying to do this on their own,” he says. “We shouldn’t be having to give this type of advice, we’re almost taking the role of the clinician having to draw on our own experiences, but everyone’s different which is why we need that clinical expertise.

“Cannabis can cause seizures if you get the dose wrong, it’s not like pain and other conditions where if it doesn’t work then it’s not life-threatening.”

Dr Adelaida Martinez, a former consultant at the Portland Hospital for Women and Children in London, and one of the few who has been prescribing for children with intractable epilepsy retired in October. She wrote to Health Secretary Sajid Javid in a public letter, outlining her concerns for these patients, who without access to this medication would be left “fighting for their lives”.

Dr Martinez claims that she has looked for an alternative paediatric neurologist to take over her patients but this has proved to be “extremely difficult”.

Many blame the current crisis on guidelines from the British Paediatric Neurology Association (BPNA) guidelines, which they say prevent doctors from prescribing cannabis-based medicines and “deny children safe treatment”.

Fifty clinicians signed an open letter to Mr Javid, outlining their concerns about the guidance, which state that the body does not recommend the prescribing of products containing THC due to a “lack of evidence of safety or efficacy.”

The BPNA also states that you must be a paediatric neurologist to prescribe, but this is not based on law and is not supported by national guidance, according to the Medical Cannabis Clinicians Society (MCCS), which authored the letter.
“Our concern is that what appears to be a deeply entrenched and dogmatic position on this subject from the BPNA is effectively denying sick children access to an efficacious and safe medicine that may well reduce or even stop their seizures and immeasurably improve their quality of life and reduce their chance of death,” the letter stated.

“It is deterring private prescriptions and is playing a part in the almost total block on NHS prescriptions. This block in turn is forcing many very vulnerable families to have to fundraise thousands of pounds a month to source the medicine privately.”

Desperate parents

It is understood that earlier this year the BPNA referred one doctor who was prescribing cannabis medicines to the General Medical Council (GMC) on the basis that he was a paediatric rheumatologist rather than a paediatric neurologist. The case was dropped following review and no further action will be taken.

The MCCS letter included a statement from the GMCs independent medical expert who was quoted during the review as saying the BNPA position is “probably not in the best interests of children”.

However, as cannabis-based medicines remain unlicensed by the MHRA, without the support of the BPNA and other bodies such as NICE, clinicians don’t feel comfortable prescribing, explains Hughes.

“There are many unlicensed medications that are prescribed for epilepsy, but because that’s common practice, clinicians have the confidence to do it,” he says. “As cannabis is so new and there’s the stigma attached to it, doctors are leaning on NICE guidelines and if something were to go wrong, they’re on their own. I know there are some who would be willing to prescribe but they don’t want to be held responsible.”

This is having a knock-on effect on the ability to collect the “robust” evidence of the safety and efficacy, which regulatory bodies have repeatedly called for.

“Everyone is saying that we need more robust evidence, but we’re not going to get any evidence if there’s no one prescribing,” adds Hughes, who through Medcan Support is planning a new study of around 60 patients, as it is limited to the number of children which are currently prescribed for.

“We can only grab the data from the current patient cohort at the moment.”

Earlier this year a study by Drug Science showed that there is a 96 per cent chance of a child significantly improving after prescription of full-spectrum cannabis. The MCCS, Medcan Support and other organisations across the industry are calling for this real-world evidence to be taken into account and to treat individual patients on a case-by-case basis, rather than relying on randomised control trials (RCTs) which are not suited to full-spectrum cannabis.

Parents: Portrait photo of Dr Lewis

Dr Evan Lewis

Dr Evan Lewis, director of the Neurology Centre of Toronto, and a specialist in pediatric epilepsy argues that this evidence is already out there.

“There is evidence now to support cannabis in epilepsy, that details a clear mechanism of action in terms of the endocannabinoid system and its role physiologically,” he tells Cannabis Health. “There’s certainly good theory behind how cannabis works in the brain and what the effects are in terms of epilepsy, from very good robust clinical research that’s been done in randomised control trials.

“Drug-resistant epilepsy is defined by a child who has seizures and has tried two medications or more. The research and data show that the chance of success for a third medication is less than three per cent. At that point, in my opinion, cannabis should be considered as an option.”

He continues: “Cannabis has a unique mechanism of action compared to the other drugs, so it’s very possible once you hit the drug resistance stage that underlying epilepsy may be due to an imbalance in the endocannabinoid system (ECS) or it may be that the ECS can be supplemented by cannabis to help prevent seizures.”

Dr Lewis is currently carrying out a review of research into the effects of THC, which has so far indicated that the long-term use of cannabis may not affect cognitive functioning. He advocates for clinicians to take a ‘harm reduction’ approach to their practice.

“From my perspective, parents are going to do it anyway, so when a practitioner refuses to prescribe that’s the worst-case scenario. Those individuals will source the cannabis from somewhere else, probably illegally and then nobody is taking care of these children,” he says.

“It’s the duty of the practitioner to send parents and patients to those resources, knowing that, in all likelihood, they’re going to source that cannabis and get it themselves. To push parents away or ignore parents is actually doing harm.”

Medcan support

Hughes has encouraged clinicians to speak to experts at Medcan Support and the MCCS to educate themselves on the existing research and access advice. He also called on the 60 existing medical cannabis prescribers in the UK to support pediatric specialists in prescribing.

“The lack of access to cannabis prescriptions is a harm that needs to be removed from our healthcare system,” adds Dr Lewis.

“The tide has shifted so much that whether it sits well with them or not, it is now a duty for clinicians to learn about this. Learning can mean educating themselves on resources and where to send patients or becoming a prescriber themselves, but there’s no room on that spectrum for doing nothing.”

Cannabis Health contacted the BPNA for comment but did not receive a response.

 

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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

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My daughter’s seizures reduced by 95% on medical cannabis
Emily Carkeet with her three-year-old daughter Clover

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.

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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.

My daughter’s seizures reduced by 95% on medical cannabis

Spencer, Emily and Clover Carkeet

Trying CBD

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.”

My daughter’s seizures reduced by 95% on medical cannabis

Clover’s parents say THC was a “game-changer” for her

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.”

Emily and Spencer, with Clover, on their wedding day recently

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.”

 

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Cancer survivor reveals how medical cannabis “saved his life”

Barry Freeman swapped his pain medication for medical cannabis.

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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.”

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Growing “appetite” for medical cannabis among UK clinicians

Over 300 health professionals have signed up to learn more about medical cannabis.

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Growing "appetite" for medical cannabis among UK clinicians
The Medical Cannabis Clinicians Society (MCCS) now has revealed it now has over 300 members.

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.

Fibromyalgia: A banner advert for the medical cannabis clinic

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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