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UK’s “broken” system needs urgent repair

Dr Frank D’Ambrosio has advised the UN on medical cannabis and prescribed it to 10,000+ patients. Here’s his take on the UK’s failure to provide access to the medicine.

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“It’s a dire situation”, says Dr Frank D’Ambrosio of the current plight of UK families struggling to access medicinal cannabis.

It’s also indicative of a “broken system”, he believes, since the UK is the biggest producer and exporter of legal cannabis on the planet, “yet the citizens have no access to it”.

As one of the world’s leading campaigners for policy reform on medical cannabis, D’Ambrosio is well placed to comment on the UK picture.

He spent 30 years as an orthopaedic spine surgeon in California, witnessing thousands of patients in chronic pain.

After 20 years in the field, he realised he had an office full of patients addicted to opioids.

Six years ago he stopped prescribing opioids and convinced 90 per cent of his patients to move to the cannabis plant. He’s since treated over 10,000 patients with opioid addiction and successfully transferred them over to the use of cannabis.

Last year he addressed the World Health Organisation – which directs international health within the United Nations’ system – telling its drug dependence committee not to fear cannabis.

He says: “In the UK we’ve essentially had the legalisation or allowance of medical cannabis prescriptions as approved by Parliament. This was then given over to the medical societies which actually formed a roadblock. So it has really did nothing and the NHS has so far issued no prescriptions.

“The only way people can get access cannabis is to go to private clinics where they are paying between £1000 and £2000 a month. If you’re very rich that’s fine but this is ultimately a two-tiered medical system with regards to cannabis.

“There are plenty of families with children with epilepsy who can’t afford £2000 a month. They’re essentially doing fundraising every month, just to get their children medicine. I can’t imagine that this was what they hoped would be the result of allowing medical cannabis to be available to citizens in the UK, or if it was, then it was a pretty duplicitous experiment.”

The situation is all the more bewildering for families given that the UK produces and exports more cannabis medicine than any other country, according to the UN.

A report published last year showed that the UK produced 95 tonnes of legal cannabis in 2016, putting it ahead of Canada in top spot. That UK production accounted for 44.9 per cent of the world total at the time is largely down to production of GW Pharmaceuticals’ cannabis-based medicine, Sativex.

D’Ambrosio says: “If you have a country that’s exporting so much, why can’t patients get access to it? And why can’t you have other companies come in to lower the cost and make it more accessible? It seems incredibly hypocritical that it’s okay for people in the countries you are exporting to to access it but not the citizens of the UK.”

Some argue that the jackhammer to the medical profession’s “roadblock”, might be yet more research into cannabis medicine’s efficacy. For all the existing studies and anecdotal evidence that exists, the Department of Health and other official bodies continually point to the need for an improved “evidence base”.

D’Ambrosio says: “I think the move by Parliament last November to legalise medicinal cannabis was smoke and mirrors. They punted it from their lap into the lap of the medical societies knowing full well that they would stop it there.”

In August, the National Institute for Health and Care Excellence (NICE) said it was “unable to make a recommendation about the use of cannabis-based medicines for severe treatment-resistant epilepsy because there was a lack of clear evidence that these treatments provide any benefits”.

On the same day, NHS England and NHS Improvement issued a report setting out a series of measures to help remove barriers to the appropriate prescription of medical cannabis on the NHS.

Among them were several steps aimed at speeding up the generation of research linking cannabis with various conditions.

Aside from research,  pricing is also an issue that needs to be addressed, says D’Ambrosio.

“I think there’s enough evidence out there already, if you take evidence from other countries. But also, the cost is just so prohibitive. If you only have one producer of medical cannabis in the country, the price is going to essentially be fixed.

“Over time, if you had two or three more companies come into the UK, to be able to compete, that would lower the price and then all of a sudden, you’ve got the studies that will fulfil the requirements of what is a medicine according to the NHS, and you bring the price down.”

In September, D’Ambrosio visited 10 Downing Street to deliver his report on the UK’s medical cannabis landscape as it has emerged over the last two years. This follows two visits to MPs and patients in the UK last year. He will also soon be releasing the full results of an online survey of patients he has conducted.

The study is ongoing but based on responses from the 4,700 patients questioned to date, the top five reasons for using medical cannabis are for: anxiety, depression, headaches, sleep problems and as an alternative to opioids. A further 15,000 to 20,000 people will be surveyed in the coming months.

“One of the big negatives aimed at cannabis is that it’s addictive. The reason people say it’s addictive is because when you stop using cannabis, you may become anxious, depressed and unable to sleep. But that’s not really addiction, because the top three reasons for using cannabis in the first place are because you’re depressed, anxious and you can’t sleep.”

Despite the current lack of access to medical cannabis in the UK, the Californian does see some signs of positive change – but not nearly enough.

“Children with severe epilepsy are slowly starting to be treated via Great Ormond Street which is admirable. However, a whole host of other patients are being left by the wayside.

“The UK’s spiralling opioid addiction can be handled by the adoption of non-addictive medical cannabis as an alternative to opioids. Domestic supply is the way forward for people as a way of beating the prohibitive cost from profiteering pharmaceutical companies.”

Raising medical cannabis awareness on both sides of the doctor/patient divide might also help to improve access.

Most doctors have had little to no formal training in cannabis medicine, while many are also understandably influenced by somewhat restrictive guidelines from official bodies such as the Royal College of Physicians and the British Paediatric Neurology Association.

An added complication is the fact that cannabis is an unlicensed medicine, meaning that the doctor, rather than the manufacturer, must take full responsibility for it should something go wrong.

“GPs are getting more and more comfortable with cannabis medicine because they know the science behind it. As well as educating GPs, it’s about educating patients. They will then go back to their MPs and say ‘this is what we want, how can you make it happen? Open up the doors for the GPs to play their part’ – and don’t hang the threat over them of losing their medical licence if they use cannabis.”

In California, D’Ambrosio’s patients have been able to legally access medical cannabis for 23 years, while recreational cannabis was legalised there in late 2016.

“Has it been a resounding success? It depends who you ask. In my practice, I’ve seen medical cannabis help so many people that I could not be a stronger advocate for it. But there are different agendas, for example taxes are being attached to cannabis, because you can get it both from a medical facility and in shops recreationally.

“The problem with taxation is that there are some people who are so against taxation that they’re turning back to the underground black market. So it’s a work in progress.

“I always tell people that I live my life beta, because I am always going through changes. And I think that’s exactly what cannabis is going to be going through for the rest of our existence. It is always going to be in beta, we’re always going to keep tweaking and figuring out what the next move is.”

The UK medical cannabis model is certainly a work in progress, as is Britain’s burgeoning cannabis wellbeing products sector.

The UK CBD market will be worth almost £1bn per year by 2025, the Centre for for Medicinal Cannabis (CMC) predicts. Does this help or hinder the cause for better access to medical cannabis prescribed by doctors?

D’Ambrosio says: “In an ideal world, accessibility to CBD which is non psychoactive and has well documented beneficial effects to health, wellbeing and recovery, is good. I think what’s going to be a problem, just from speaking to some of the law enforcement officials I met in the UK, is that a lot of the CBD products are not considered THC free.

“The definition of CBD oils sold on the High Street is that they have less than 0.2 per cent THC and that’s why they can sell it. I can see the National Crime Agency cracking down and saying if it has any THC in it at all then this is a dangerous drug and you’re going to get into trouble. I wouldn’t be surprised in the next one or two quarters if you saw CBD products being taken off the shelves.”

Such drastic action has been speculated in the past, although the pace of growth in the sector – and the sheer weight of resistance from consumers and trade bodies – would make it a hugely divisive and controversial move.

While D’Ambrosio is following the UK situation closely, his mission to liberate access to medicinal cannabis goes beyond these shores and his native US.

He is the chief medical officer of London Stock Exchange (NEX) listed Block Commodities, which holds medical cannabis growing licences in Africa.

“The company’s plan is to build cannabis economies on the African continent. The first country we’re working in is Sierra Leone.

“We’re not only looking to create a cannabis economy where we can export cannabis oil from, to countries that are willing to accept the product; but more importantly it is to grow cannabis so that the residents can use the cannabis as medicine. There’s been an enormous increase in the importation into Africa of Tramadol.

“It’s quite addictive, and it can be lethal so we want we want people to be able to grow the medicine and create an economy to not only build the financial welfare of the family, but also the medical welfare of the people.”

Hear more from Dr Frank D’Ambrosio in the next print edition of Cannabis Health. Click here to sign up for your entirely free, no strings subscription.

Cannabis Health is THE UK magazine covering cannabis medicine and wellbeing from every angle. It is affiliated with the Medical Cannabis Clinicians Society and lists campaigner Hannah Deacon, leading expert Professor Mike Barnes and prominent doctor Dani Gordon on our editorial panel. For a limited time only, we are offering a free – absolutely no strings – annual subscription to the quarterly print title. You will  receive four issues, delivered with discretion to your address – with no hidden fees or obligation to pay beyond that. To repeat, this is a 100% free promotion available to the first 100,000 sign-ups.

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Case Studies

“I experienced peace I’d never felt before”: The African encounter which inspired a CBD empire

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Paul Shrive, co-founder of Leafline CBD

Suffering with a severe fever while in Kenya as a teenager, Paul Shrive was given a cannabis-based brew by a local. He not only recovered from the illness, but experienced mental clarity for the first time in his life, he tells Cannabis Health.

Paul Shrive, founder of Leafline CBD, had a challenging childhood. He would frequently get in trouble with his schoolteachers and was bullied by his classmates for being “different than everybody else”.

“It was a very, very difficult and traumatic time for me at school,” Paul recalls, speaking to Cannabis Health.

“Teachers used to look at me as a problem child, because when somebody was screaming at me, I just couldn’t take it; it was like I was being attacked.”

Although he has never been formally diagnosed, Paul has been told unofficially that he is on the autism spectrum, which has meant he experiences his senses differently to most people.

“Everything just goes a zillion miles per hour,” he explains.

“Something wasn’t right, but I spent my life thinking it was just me, that it was just who I was. But there was actually something out there that could make it better, I just didn’t realise it at the time.”

In 1986, when Paul was fourteen years old, his father was offered an opportunity to come out of retirement and travel to Africa to carry out work on a food manufacturing plant that he had helped set up a decade previously.

Paul was given the choice of either going to Africa or staying in school in the UK. Given the difficulties he was experiencing with his teachers and fellow pupils, Paul jumped at the opportunity and boarded the plane to Nairobi with his Dad.

Over the next nine months, Paul came to discover cannabis, which he says was part of everyday life in Kenya despite its illegality.

Paul remembered walking around the outskirts of Nairobi and seeing small children picking a mysterious plant.

“I started noticing these little kids in fields picking plants and filling up these clear bags,” Paul says.

“I wondered what they were doing.

“I got back into Nairobi centre and around the markets I saw the same boys, around eight or ten years old. My Dad told me they were shoeshine boys.

“I noticed that they had dozens of these bags around the waist – I know now that they were bags of cannabis; pure hemp growing everywhere in the fields.

“Businessmen would have their shoes polished and buy these bags and take them to their wives, because they use them for cooking, they use it as herbal remedies – it’s part of their everyday life.”

Not long after arriving in Africa, Paul became ill, catching a serious bug causing an intense fever that continued to rise despite being seen by a number of doctors. He was hooked up to a drip in his hotel room while doctors attempted to cure him through various treatments.

A British chef working at the hotel heard about Paul’s situation and approached his Dad. He believed, as the boy was suffering from an African illness, it would require African medicine to treat.

“I was delirious,” Paul says. “I was all over the place. I really wasn’t well.”

“They had a chat with one of the major tribes in the area and asked if they could help me.

“I don’t know exactly what happened, but I know that I was visited by a ‘witch doctor’ or ‘shaman’ of some kind.

“The next thing that I remember is my father waking me up. He had a clay vial in his hand containing a black and gloopy kind of liquid. It had had alcohol and pure hemp in there.

“I was out for the count completely for more than a day, but while I was knocked out, my temperature started to drop, and drop, and it allowed me to heal.”

Many people, including his father, believed his recovery was purely coincidental, but Paul says it didn’t matter whether it was or wasn’t. What struck him when he regained consciousness was how clear his head was.

“When I came around, for the first time ever, I experienced peace that I’d never felt before,” he says.

“I felt normal. There was nothing that agitated me, I could sit there without fidgeting, I could sit there without having to worry, or feel as though I had to put my hands over my ears.

“When you’ve had a whole life of what you feel is torture, it was a revelation to find that kind of peace and tranquillity.”

For the remainder of his time in Nairobi, Paul was provided with a less potent form of the concoction without the addition of alcohol. He consumed a small amount twice a day. As it contained THC, Paul remembers feeling a rush from the medicine, but it was manageable.

“I could think and I could hold a full conversation. I could look at people in the eye and totally hear what they were saying,” he adds.

On his return to the UK, Paul says he had a “short, sharp shock” when he discovered that the plant was illegal. As a young teenager, he was unaware that people were using cannabis for recreational purposes. With no access to the plant, Paul says he suffered for a number of years.

When CBD began to see an increase in popularity several years ago, Paul was quick to launch his own business, Leafline CBD with his wife Sonia, who has her own journey with the supplement. Suffering with PMDD (post-menstrual dysphoric disorder), a severe form of PMS, Sonia’s doctor prescribed her a low dose of anti-depressants.

Paul suggested to his wife that she try CBD to manage the symptoms instead, so she started taking an oil every morning and night and over time, her symptoms subsided.

“The last thing I wanted, was a pharmaceutical drug to treat it,” says Sonia.

“PMDD isn’t a mental problem, it is a hormonal problem.

“For PMDD sufferers, it last for between 6 days and 3 weeks every month which is no fun at all. I still have symptoms, don’t get me wrong, but they are for a smaller amount of time and symptoms are not as intense since taking CBD.  ”

Like the rest of the UK’s CBD sector, Leafline are preparing for the Food Standard Agency’s Novel Food Applications which close on the 31st March.

But as a firm believer in the power of whole-plant extract since his experiences in Nairobi, Paul is fearful that full-spectrum products will no longer be permitted following the deadline.

“Isolate-based [CBD] does have a purpose, it does have a mode of action, but the true goal is whole-plant and I’m really scared because I think it’s going to be taken away from us,” he says.

“Unfortunately, by doing that, it that will create a black market. I’ve had somebody that has been on whole-plant for a long time and then when we gave them an isolate tincture, it didn’t work.”

Paul adds: “You can’t mess with nature. Leave nature alone and nature will do its job.”

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Case Studies

“At 83, CBD gave me my spirit back” says grandmother-of-two

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Carla Shrive says CBD has given her a "new life"

Carla Shrive suffers from severe arthritis along with other health issues. When the pain started to impact her sleep, day-to-day life and wellbeing, her son stepped in and introduced her to CBD.

Now, the 83-year-old grandmother-of-two is off all prescription medicines apart from paracetamol and is managing her health conditions through CBD alone.

“About three years ago, I joined Slimming World,” Carla recalls.

“I had put weight on and was feeling really down. When I joined, there were tears in my eyes because I felt ashamed of myself for how big I was.

“I started to go to the sessions, but I was very much in pain. I had to do something about it because my bones were so painful; I couldn’t walk at the time.”

Her son, Paul Shrive, who runs the company CBD Leafline, recognised how much discomfort his mother was in and recommended she try CBD.

“She was taking tablets for arthritis pain and blood pressure, her hair was falling out, and she used to take a minimum of eight paracetamol a day,” Paul says.

“It got to a point on one day where she couldn’t get out of bed as her knee was all inflamed. She was in absolute agony, getting barely any sleep and her diet was all over the place.

“She was really suffering.”

Paul gave his mother a 1000mg tincture of whole plant CBD and told her to take twice a day.

“My son came to me and said ‘look, mum to help you out with your pains, I’ve found you some CBD so you might try it’,” Carla continues.

“I was curious about it; I wanted to know more, so I read some leaflets and because I have great faith in my son, I trusted his recommendation.”

After just four days, Carla started to see improvements to her health. She was having a full night’s sleep for the first time in months, her complexion improved and the arthritis in her hands started to get better.

Several months after her first dose of CBD, she is walking again and finding daily tasks such as cooking much easier.

“It’s marvellous, 18 months ago, I couldn’t walk like I do, I wasn’t very happy at all and hated all the medication I was taking,” she says.

“But since I started CBD, there has been no need for it.

“I’m walking a lot now, which I couldn’t do before and the pain just isn’t there anymore. It’s nagging from time to time, but it doesn’t bother me as much at all.”

Carla says she has her “spirit back” since taking CBD and believes it has given her a “new life”.

“I feel happy; it’s given me a great chance to live again,” she adds.

“At 83, I feel young, especially at heart.”

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Feature

‘Medical cannabis was my daughter’s last hope – I wouldn’t dream of taking it away from her now’

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Tannie and her daughter Indie-Rose

Cannabis medicine was Tannine’s last hope when she boarded a plane to the Netherlands with her severely epileptic daughter. But now Brexit regulations threaten to take that away, she tells Sarah Sinclair. 

Indie-Rose, now six, had her first seizure in her high chair at four months old.

“I’d never seen anything like it in my life. I was petrified I didn’t know what to do,” says Indie’s mum Tannine Montgomery.

Doctors reassured Tannine it was just a febrile convulsion, a fit that can happen in babies as a result of a fever or spike in temperature. Although she was shaken by it, she wasn’t overly concerned.

“I was really scared about what I had seen, but we took her home and I thought to myself she’s going to be fine, it’s just one of those things,” she says.

“But Indie didn’t stop seizing. The seizures progressed quickly and she was soon having a lot of them. We were constantly calling an ambulance.”

Even when doctors told Tannine that they thought her daughter had epilepsy, she was still hopeful that she would lead a normal life. 

“I knew nothing about epilepsy at the time, I’d never seen anyone have an epileptic seizure, but I thought we would get some medicine and Indie would be able to live a normal life. I was quite hopeful that’s what would happen,” she admits.

Indie was prescribed various antiepileptic drugs, none of which managed to keep her seizures under control, and underwent a number of tests, from MRI scans to lumbar punctures while still just a few months old.

Her doctors eventually discovered a gene mutation related to Dravet syndrome, a rare but severe form of epilepsy, which along with uncontrollable seizures causes a number issues such as cognitive decline, hypermobility and problems with movement and walking.

By the age of two Indie had begun to show signs of Dravet syndrome, her development had halted and she lost her ability to talk, but it was the contrast seizures which were leaving her most at risk.

“By the time Indie was three, we were eight antiepileptic drugs down and still nothing stopped her seizures,” says Tannine.

“We were still calling ambulances constantly and I just couldn’t see that for her for the rest of her life.”

For the next year Tannine dedicated any spare time that she could to researching medical cannabis. 

“I’d heard it could help but if I was going to give it to my daughter I wanted to make sure I was giving her something safe and I wanted to make sure that I was being legal – I didn’t want to risk my daughter being taken off me,” she says.

Tannine eventually met the founders of a UK CBD company, who showed her around the facility, explained the extraction process and gave her some oil to try with Indie.

“For three weeks it sat in my cupboard, because I was too scared to use it,” she remembers.

“Finally, Indie had this awful night with so many seizures. I opened the cupboard to get her normal medication and saw the CBD oil. I thought, ‘I’ve got nothing to lose’.”

Indie-Rose

Ten days later Indie ran down the garden for the first time. 

“It was amazing, we’d never seen her run,” says Tannine.

“Indie’s dad and I, just looked at each other and realised this stuff was actually helping her.

“From that point on we started trying to get her a prescription, so we had guidance from doctors and could make sure we were giving her a therapeutic dose.”

With cannabis still illegal in the UK, even for medical purposes, Tannine contacted the Erasmus Hospital in Rotterdam, where a paediatrician agreed to prescribe Indie the whole plant cannabis oil Bedrolite.

With Indie’s condition at its worst Tannine left her eleven-month-old son with his grandmother and travelled to the Netherlands in a bid to save her daughter.

“She was having seizures on the aeroplane. I was petrified, but I felt like it was my last hope,” she says.

“As much as people could say it was unsafe to take her, Indie had seizures every day. I would never have got her out of the country and I needed to get access to this treatment.”

The next day Tannine took Indie to her appointment with the pediatric neurologist and collected her prescription from a local pharmacy.

“It was just a regular pharmacy selling paracetamol and other medicines, it was amazing that we could just go to the pharmacy and collect it,” she adds.

After one day on the medicine Indie slept through the night. After four days she had had no seizures at all. When Tannine’s partner arrived to join them with their son, Indie played with her little brother for the first time. 

“I remember him standing at the doorway of this Airbnb and she ran up to him to tickle him. Up until then it was like she hadn’t even known he existed,” says Tannine.

“We could see straight away how this was helping her interact and function so much better.” 

The family put their lives on hold and spent three months in the Netherlands, unable to return to the UK with Indie’s medicine. Tannine describes the experience as like “living in lockdown”.

“We were there for just over three months, but it felt like forever,” she says. 

“It was traumatic, it certainly wasn’t a holiday. We didn’t have money to spend on sightseeing, it was all for Indie’s medicine and the whole time I was fundraising to be able to afford to keep her on it, because it’s not cheap.”

Eventually Indie was granted a licence to import Bedrolite to the UK through a private prescription and in November 2018 the law changed to legalise medical cannabis.

But Tannine continued to campaign for NHS access, with no option but to rely on donations for Indie, having spent over £30,000 on her prescription fees to date.

It was this that drove her to launch her own CBD company last year to help fund Indie’s medicine, as well as supporting others in similar circumstances. 

“Unfortunately, when a bottle of Bedrolite oil is £160 for 10ml and your child’s using two of them a week, that’s not attainable for anyone who’s just holding down a normal job,” she says.

“I didn’t feel like I was getting anywhere with the government and I didn’t want to have to rely on fundraising forever.”

Tannine saved up out of her benefits and began making her own products, using a 10 percent cannabis oil, similar to Bedrolite, but with lower levels of THC and legal in the UK.

“I had a lot of good feedback and that’s when I decided that this is something I could do to provide Indie with what she needs and help people at the same time,” she says.

“I wanted to create an authentic company built on love for my child and my desire to help other people who have to suffer the way she does. 

“This isn’t prescription medication, but each person is so individual in what works for them when it comes to cannabis, it’s always worth trying something. When I get a text message from a mother who says her daughter stood up for the first time, it makes my day. 

“There isn’t anything in this world that can make me feel better than improving a child’s life.”

Indie hasn’t been hospitalised for three years since she began taking the Bedrolite, she hasn’t needed any rescue medication or pharmaceuticals and last year her attendance in school was 96 percent. 

However Brexit has left Indie and dozens of other patients without access to the life-saving medication. 

The family were given just two weeks notice after the Department of Health and Social Care (DHSC) sent a letter to importers, clinics and patient groups, stating that prescriptions issued in the UK ‘can no longer be lawfully dispensed in an EU Member State’ from 1 January, 2021.

Those prescribed Bedrocan oils through the Transvaal pharmacy based in the Netherlands, have been advised to find “alternatives”. But as many experts have warned, switching these children’s medications could be life-threatening. 

Plant and cannabis expert Dr Callie Seaman told Cannabis Health that with over 565 different secondary metabolites in cannabis plants, each batch is subtly different, let alone each product or supplier. And consistency is vital in the treatment of severe epilepsy. 

“For patients taking medical cannabis for palliative care and other diseases, a switch in oil is not the end of the world, but what’s needed with epilepsy is consistency,” she explained.

“Any neurologist will tell you that when you find something which works, you have to stick with it. As soon as you start changing things that’s when the issues arise, and any seizure comes with the risk of death.”

Indie still lives with disabilities as a result of her condition, but the seizures she has are much less severe. 

The fact her medication is at risk is an added worry for Tannine, who says if the legislation surrounding the import of cannabis medicines from the Netherlands doesn’t change they fear her condition could worsen. 

“She’s doing so much better than she was,” she adds.

“I couldn’t dream of taking it away from her now.”

 

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