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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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Patient groups are key to a thriving cannabis industry – so support us, say campaigners

Patient advocacy groups have called for more support from those in the cannabis industry.

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It’s time the cannabis industry gave advocacy groups the support they deserve, argue campaigners, after all they are the ones driving the sector forward.

Representatives from some of the UK and Europe’s leading cannabis advocacy groups have called for more support from those in the industry, highlighting the vital contribution they make to the development of the sector.

Speaking on a panel at Cannabis Europa in London on Wednesday 29 June, several leading campaigners said the industry had taken the efforts of patients for granted for too long.

In the words of Mary Biles, author and moderator of the event, it is the patients who “forged ahead and created this industry”. US research programme studies cannabinoids in ovarian cancer

It wasn’t the tireless efforts of CEOs which changed the law in November 2018, opening up a potentially highly profitable market – but also what many saw as an opportunity to make a “quick buck”.

It was the mothers and families, whose children were sick, who were full-time carers, surviving on just £62 a week from the government. It was the patients who put themselves at risk to educate others and call for change, despite their own limitations. 

Jacqueline Poitras, founder of patient group MAMAKA and representative of the IACM Patient Council, is the campaigner responsible for changing the law in Greece, after fighting for her daughter to access medical cannabis. 

“Our advocacy organisation started the ball rolling in 2016,” said Poitras.

“As in so many other countries, it was the patients who asked the politicians to change in law. What we have done ever since then is fill the role of everybody else who’s not in the value chain at the moment.”

Author Mary Biles hosts the Patient Perspectives panel

The bridge between patients and industry

In the years since the law change, organisations such as Medcan Support and PLEA (Patient-Led Engagement for Access) in the UK, and the IACM Patient Council internationally, have become a vital bridge between the patients they support and the big businesses producing their medicine.

Medcan Support now has over 500 members, most of whom are parents and family members of children with severe epilepsy who are desperate for help and seeking advice, having heard that cannabis might help them.

PLEA has over 1,200 members and is run entirely by patients, all of whom are living with chronic conditions.

It is these organisations which take the lead on liaising with the private sector, lobbying for better standards for medical cannabis patients, educating clinicians and cannabis naive patients and even building the evidence base. 

They are support workers, social media managers, campaigners, educators and consultants. And yet the majority, if not all, are volunteers. 

“We all happened into this,” said Poitras.

“We were called to it and it’s not something that we can walk away from. If we don’t do it, nobody else is going to do it. We are convincing people and politicians that cannabis can help them. We are the bridge between companies and customers.”

She added: “But how much longer do I have to continue working at something on a volunteer basis?”

From left: Hannah Deacon, Matt Hughes, Dr Bonni Goldstein, Jacqueline Poitras and Dr Callie Seaman

Representatives from PLEA revealed they work up to 40 hours a week behind the scenes, all for free. Its chairperson Lorna Bland has spent 40 years working in the voluntary sector having recently received a Royal Voluntary Service Award for the Platinum Jubilee. 

Matt Hughes, co-founder of Medcan Support has a full-time job in IT, and a disabled son to care for. But he spends his evenings responding to questions from other families. He isn’t going to ignore them, he has been there himself after all.

On top of that him and his small team are organising and hosting webinars, creating social media content and acting as the vital go-between for private clinics and regulators. 

“This is the core of what patient groups do, it’s not just social media and what people see from the outside, we’re usually the ones sorting out the issues in the private sector when the industry isn’t,” he told Cannabis Health.

“We do a huge amount that goes unnoticed, acting as a key link between patients and the industry. If a product is stopped leaving patients at risk of being left without medication, we are the ones sorting it out. If Medcan didn’t exist and we didn’t do all the work, who would?”

The value of lived-experience

When industry players do want to listen to the patients, they are usually expected to share their valuable insights and lived-experience for free.

“All of the information and experience that [advocacy groups] have gathered over the years, in the thousands of hours that have been invested into this and the patients around us, is valuable information for these companies,” said Poitras.

Co-founder of Medcan Support and director of Maple Tree Consultants, Hannah Deacon set up an initiative called Patients First with Volteface, earlier this year, which pays patients to participate in focus groups.

What concerns me is that people see medical cannabis as a commodity and a way to make a quick buck,” she said.

“It’s not going to be sustainable. You need to listen to patients, because that’s how you develop a robust business.”

Deacon continued: “This is very personal. Businesses must not try to access this sort of information for free, because it’s very valuable and it’s a commercial thing that they are trying to achieve. If you are trying to do that, then you should help the people running those organisations. There are companies doing that, but not enough.”

Patients at the heart of everything

One company which is doing so is medical cannabis distributor, Chilam. Its co-founder and CEO, Monique Ellis, is a cannabis patient herself, having battled with endometriosis for over 20 years. 

Chilam has put patients at the heart of its business strategy, investing in a comprehensive research and development programme before it’s even properly off the ground.

But Ellis doesn’t see this as a luxury, or a token gesture, rather a necessity that will set the company in good stead for the long haul.

“We’ve taken the view that the patient is at the absolute heart of everything we do,” said Ellis.

“It needs to be front and centre in your business model. It is sometimes described as a luxury to be able to roll out an R&D programme before you’re profitable or are trying to complete a funding round, but it’s not a luxury, it’s a must-have. You need to invest in it, it needs to be a core dimension to the business plan and you need to make those budget considerations.”

Monique Ellis, co-founder of Chilam

Ellis continued: “We need to make sure that we’re engaging with advocacy groups, and not just within the cannabis industry. We’ve got to think about cannabis naive patients that exist outside of the kind of small embryonic industry that we’re working with.

“That means that we need to give financial support to charities – it should be built into your social impact strategy. If these are not the values that are underpinning the way that you operate as a business, then you don’t have something that’s scalable and you won’t have patients for life.”

The key to developing the market

There are now said to be around 17,500 people with a legal prescription for cannabis in the UK. According to polls, 1.4 million people are self-medicating, suggesting the legal market has only fulfilled a tiny proportion of its potential. 

There are just 110 doctors prescribing out of thousands on the specialist register who could legally do so. 

Advocacy groups are the key to reaching those people. 

“Keeping advocacy groups going is absolutely vital to this developing market,” said Deacon. 

“I fear that we live in this bubble at the moment. The only way we’re going to reach the millions and millions of people in this country who could benefit, is by supporting advocacy groups who can get out and talk to naive patients, attend conferences and create education.

“Companies can’t do that, but we can and that’s why we are vital to the development of this sector. But we are volunteers and we cannot expand the work we do without being supported by the industry.”

The bottom line

We’re not talking about huge investments here. According to Deacon just £200 a month would allow Medcan Support to do more – and if 10 companies stumped up the cash, they could afford to employ someone to work full-time. 

Poitras ended by urging cannabis businesses to reach out to patient groups in their country, she said: “Everything has to be built around this and if you’re not doing it at the moment, take a very critical look at your company and see where this can be placed within your system.”

Deacon added: “Every day that you go into the office, you need to think about who you’re working for. Who is your stakeholder?

“If you’re focused on your margins, then you’re not doing it for the right reasons. You need to be focused on who you serve, which is your patients and your doctors. I think when you start doing that, you’ll start winning.”

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10 key patient takeaways from Cannabis Europa

Everything you need to know from the UK conference this week

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Photo credit: Jacqueline Poitras, Medcan Support

The UK cannabis conference, Cannabis Europa, took place this week, with a number of expert patients and prescribers taking to the stage alongside the industry professionals.

Dozens of talks and panel discussions were held over the two days from 28-29 June.

In a welcome move by the organisers, this year several panels focused specifically on voicing the patient perspective, digging deeper into the highs and lows of the sector as it stands today.

Out of all the information that was shared, we’ve broken down some of the key takeaways for current and prospective medical cannabis patients in the UK. 

GP prescribing should be a priority

Professor Mike Barnes, chair of the Medical Cannabis Clinicians Society made a personal plea to the Home Secretary Priti Patel to permit GPs to prescribe cannabis, as well as doctors on the specialist register.

On the panel titled Bridging the Gap, Professor Barnes said pushing for GP prescribing should be a “number one priority” if we want to widen access in the UK. He urged Patel to make the “one-line change” to the Misuse of Drugs Act which would allow for the change in legislation.

Arthritis: A banner advert for the Medical Cannabis Clinics

“A dead child is not better than a child on cannabis” 

World-leading paediatrician Dr Bonni Goldstein, and the UK’s own force of nature, Hannah Deacon, had the crowd around the Expo stage welling up as they spoke about the state of paediatric access to medical cannabis in this country.

Dr Goldstein, who has been exploring cannabis as a medicine in epilepsy and other long-term conditions since 2008, said she has seen a 70-80 per cent success rate in her patients, more than most pharmaceutical drugs.

She said: “What is the point of hanging onto these paradigms of pharmaceuticals when you might be able to change the quality of life and improve a child’s existence with a plant?”

She also urged doctors to “collaborate” with parents on their child’s care.

Summing up the talk with – in her own words – a “brutal” reality check, Dr Goldstein added: “A dead child is not better than a child on cannabis… this is unacceptable.”

CEO calls for decriminalisation

The CEO of Lyphe Group, which owns the UK largest prescribing clinic, The Medical Cannabis Clinics (TMCC), Jonathan Nadler, surprised many when he revealed that he wants to see the decriminalisation of cannabis in the UK.

Nadler, who was speaking on the Bridging the Gap panel, said he was in favour of decriminalisation and a “grow your own” model, if the NHS was not going to budge on access.

“I believe we need to decriminalise if the NHS aren’t going to move and cannabis isn’t rescheduled – we have to decriminalise, have a grow your own market and clubs in operation,” he said.

“That will allow patients that can’t afford cannabis to access through a grow your own market.”

The need for better training 

Professor Barnes admitted that there was a need for a “proper, accredited” training course for clinicians who wish to prescribe cannabis medicines.

His comments came after Jonathan Nadler, of TMCC, promised his team had already, and continued to do so, made “improvements” to training following a “disappointing” CQC report earlier this year.

Professor Barnes said: “The patients are the experts, so the doctors have got to be compassionate and well-trained, but also trained to actually listen to the patient, because the person in front of them probably knows more about it than they do. “

The “death of all cannabis clinics”

Barnes, who is also chair of the Cannabis Industry Council, also said he would eventually like to see the catch-all cannabis clinic model we have in the UK at the moment, move towards more general condition focused practices, such as pain clinics, where cannabis is just one of a variety of treatments on offer.

“The cannabis clinic was the only way to start,” said Barnes.

“But I think, if we assume access is going to stay private, then what I’d like to see is a clinic where the doctor can look at all the possibilities, such as physiotherapy, exercise, over-the-counter medications and cannabis, just as part of their general armoury.”

He added: “We want to embrace [cannabis] as a perfectly valid, perfectly safe part of medicine. So I think in the end, going forward five or 10 years, the pure cannabis clinic will have gone or morphed into a more generic clinic.”

The double stigma of cannabis and women’s health

On a panel exploring the role of cannabis in women’s health, Dr Dani Gordon, vice chair of the Medical Cannabis Clinicians Society, spoke out about the stigma facing women who find cannabis helpful for a variety of medical conditions.

Dr Gordon highlighted how the evidence base is often “skewed” to focus on the potential harms of cannabis, rather than the benefits to a patient’s pain or overall quality of life.

She also said that while she “hadn’t been brave enough” to do so herself, in some cases continuing to prescribe cannabis during pregnancy may cause less harm than forcing a patient to return to other medications or leave the symptoms of their condition untreated. 

Dr Gordon who has treated women of all ages at her clinic – her oldest patient is 89 – says the stigma is slowly being broken down. The next steps? To tackle that facing mothers and parents who use cannabis recreationally, too.

Patients are the heart of the industry…

In a powerful panel discussion, speakers Hannah Deacon, Jacqueline Poitras (MAMAKA and IACM Patient Council), Monique Ellis (Chilam) and host Mary Biles, made the strong case for patient advocacy groups to be taken seriously in the sector.

The panel highlighted the hard work and long hours of volunteers who have driven medical cannabis forward since the beginning, taking the lead on campaigning, educating and even building the evidence base. 

Ellis, who is an endometriosis patient herself, commented: “I come from a technology background, where your subscriber is king. It’s exactly the same here – patients are the kings and queens of this industry. 

“We need to make sure that we’re engaging with advocacy groups, and not just within the cannabis industry, we’ve got to think about cannabis naive patients that exist outside of the kind of small embryonic industry that we’re working with.”

…So pay them fairly  

The panel also called for long overdue financial support from companies who wish to draw on their invaluable expertise to “make a quick buck”.

“All of the information and experience that they have gathered over the years, in their thousands of hours that have been invested into this, that’s valuable information for these companies,” said Poitras.

Deacon added: “I don’t think cannabis businesses should treat this business model any differently to any other service industry… Who’s your stakeholder? It’s your patient and your doctor. That’s how you make money. You understand what your patient wants, you understand how you can connect with doctors, and you put money behind that.”

A small contribution of just £200 a month would allow Medcan Support, which provides support to dozens of families looking to try medical cannabis for their child, to employ a full-time member of staff.

Big Narstie highlights the gulf between “black and white market” cannabis

Rapper and cannabis enthusiast, Big Narstie, addressed the elephant in the room when he spoke about the huge gap between the predominantly “white” legal medical cannabis industry and the recreational market which is a huge part of many black and ethnic diverse cultures, who use the plant for medicinal, spiritual and wellness purposes. 

He also expressed his ambitions to open a Rick Simpson clinic in the future, treating patients and running courses on how to use Rick Simpson Oil safely. 

Fair Trials launch global justice project

Representatives from NGO Fair Trials and the Last Prisoner Project finished the conference with the announcement of a new global justice project which aims to secure relief for those in prison for cannabis-related convictions.

Through collaboration with local partners in appropriate jurisdictions, the Fair Trials project will identify people in need of legal assistance, and recruit, train and match volunteer lawyers to take on their cases.

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Fair Trials and Last Prisoner Project seek to launch global cannabis justice project

Fair Trials’ Global CEO Norman L. Reimer to discuss the project at Cannabis Europa Conference in London on June 29.

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A new initiative from Fair Trials and the Last Prisoner Project aims to redress the harm caused by cannabis prohibition and to secure relief for those in prison for cannabis-related convictions.

The criminal justice reform NGO, Fair Trials hopes that the industry will support its work in countries across the globe where cannabis laws are being liberalised. Through collaboration with local partners in appropriate jurisdictions, the Fair Trials project will identify people in need of legal assistance, and recruit, train and match volunteer lawyers to take on their cases.

Fair Trials has enlisted the help of the Last Prisoner Project, a coalition of cannabis industry leaders, executives and artists dedicated to bringing restorative justice to the cannabis sector.

More and more jurisdictions are allowing adults to use and distribute medical and recreational cannabis. But after decades of prohibition, countless people remain behind bars or continue to suffer the collateral consequences of a cannabis conviction.

US research programme studies cannabinoids in ovarian cancer

“The injustice of cannabis prohibition has resulted in millions of people worldwide serving time in prison or being saddled with a cannabis conviction, which brings with it a lifetime of harmful consequences, ranging from education and employment opportunities to immigration status and parental rights,” said Fair Trials Global CEO, Norman L Reimer.

“Of course, these harmful effects of prohibition not only impact the individuals charged, but also their families and communities. And those effects have been borne disproportionately by minorities, communities of colour, and the socio-economically disadvantaged. Legalising cannabis alone does not equal justice. Together, we must address the ongoing harms of past prohibition and leave no cannabis prisoner behind.”

The project will be modelled on the US Cannabis Justice Initiative, a collaborative effort between the cannabis industry and volunteer lawyers in the United States. When Norman Reimer was the Executive Director of the National Association of Criminal Defense Lawyers (NACDL), he partnered with the Last Prisoner Project to establish the initiative.

“Key to the success of the initiative has been generous donations from legal cannabis companies and consumers nationwide,” said Last Prisoner Project Co-Founder Steve DeAngelo. “Fair Trials, with its global reach as the world’s criminal justice watchdog, is uniquely positioned to build and house the infrastructure that’s going to be needed.”

Tomorrow (29 June), Norman Reimer will address the Cannabis Europa Conference discussing the project. Mr Reimer will be part of a panel entitled ‘Leave No Cannabis Prisoner Behind,’ and will be joined on that panel by Mary Bailey, Managing Director at the Last Prisoner Project; Dr. Laura Garius, Policy Lead at Release; and Denzel Uba, an individual impacted by criminal cannabis prohibition.

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