Medical Cannabis: the life-changing but elusive prescription
It has been two and a half years since medical cannabis has been legalised in the UK, but there are only 18 approved prescriptions on the NHS. Why are so many people being denied a medication that could transform their life?
All mothers hope to see their son or daughter blossom into adulthood. They hope for them to get the education they deserve, have a social life full of enjoyment and perhaps most of all, they hope for them to be treated fairly within society. But sadly, for mothers like Karen Gray, this has been an afterthought — her son’s life has been dedicated to survival and a battle to access the treatment he deserves.
Murray Gray suffers from Doose Syndrome — a rare form of epilepsy that tragically takes grip of a child’s life. Unlike more common types of epilepsy, Doose syndrome causes four types of seizures, each having its own unique, adverse effect on the body. They are vicious and frequently occur throughout the day and night with no apparent trigger, making preparation difficult. There is no way out, no way to escape, for the child, or the family.
“It was awful,” as Mrs Gray recalled, “To see him in that state was heartbreaking, and what makes it worse, is there wasn’t anything I could do to help him.”
But what she didn’t realise was that there was hope — through what many would perceive to be an unlikely source — cannabis. Mrs Gray claims the private prescription has transformed her son’s life and has given a future that every child deserves.
Unlike most children in the UK, Murray has been in a battle for most of his life. In his worst days, he went into a non-convulsive state and was admitted to hospital in January 2018.
“He was lying in a bed in hospital unable to move, unable to talk, unable to do anything,” described Mrs Gray, “He was basically lying in a vegetative state, it was so upsetting to see”.
But when she explained the severity of his seizures, it became easy to understand how his health deteriorated this far.
Aside from tonic-clonic seizures, which are common in most conditions of epilepsy, Murray also suffered from three other rarer seizures.
He occasionally had drop seizures, which is when the body suddenly loses muscle tone, causing an abrupt fall. He’s been taken to the hospital to glue his head from a gash on one occasion. More commonly he suffered from absence seizures, which was described by his mother as “sitting and staring, it’s like he isn’t in the room”. He also has myoclonic seizures which are brief shock-like jerks from a group of muscles. His mother compared this to being “electrocuted”.
“During a bad period he would have 25 tonic-clonic seizures during a ten-hour period which is quite a lot,” said Mrs Gray, “I counted up to 600 myoclonic and absences in one day which is also a large amount. His whole life revolved around his seizures, and he could rarely go to school.”
Due to the severity of Murray’s condition, he was prescribed a variety of pharmaceutical drugs in an attempt to suppress the seizures. But nothing worked — his mother describes the condition as “drug-resistant epilepsy”, and in fact, the drugs only made things worse.
Murray Gray was prescribed sodium valproate — a common medicine used to treat epilepsy. In a rare occurrence, his mother claims that his body started to cease producing red blood cells, and he needed a blood transfusion. He was also prescribed steroids, which caused him to “balloon up”, as his mother describes. He put on two stone in a short period, and due to this intense weight gain, the doctors decided to take him off the medication.
“Now, his quality of life is amazing,” said Gray, as she explained the results of his prescription of medical cannabis, “he doesn’t need a wheelchair or a protective hat, he is running up and down the place, his speech is coming on, he can learn now and is in school full-time — it’s a complete and utter turnaround. He hasn’t had a seizure since June last year.”
But this doesn’t tell the whole story, only the happy ending. Mrs Gray spoke about the difficulties of getting a prescription for medical cannabis and the anger she felt due to being denied — even when it was legalised in November 2018.
According to The Medical Cannabis Clinics, only 700 prescriptions have been given out privately, while the NHS Business Services Authority (NHSBSA) figures show only 18 people — two being children — were prescribed cannabis-based products through the NHS.
“In March 2018, I started getting really angry because I began researching cannabis oil and how it can help people, not only with epilepsy but for MS (multiple sclerosis) and chronic pain,” says Mrs Gray, “So, I started campaigning and got 240,000 signatures for a petition, and with the help of Charlotte Couldry, Hannah Deacon and others we managed to get the law changed November 28. But nothing happened.”
Even though Mrs Gray was part of the movement to legalise cannabis, the doctors said no repeatedly to the call for THC based medicines that previous sufferers, such as Alfie Dingley, were using to suppress the onset of seizures.
Instead, they prescribed Murray with Epidiolex — a CBD isolate which only contains 0.3 per cent THC.
Mrs Gray expressed her gratitude for the prescription medicine, she said: “I was really grateful for the prescription, but I always knew that whole-plant oils with all the things in it were going to be more beneficial, from the research and what I had seen from other cases.”
While this was a breakthrough for medical prescriptions on the NHS, CBD oils were already widely available online and were slowly coming into prominence in the retail sector. The prescription allowed Mrs Gray to gain access to medicine at a lower price.
The good news was Epidiolex was stopping the seizures. It eradicated the myoclonic, absence and drop seizures, as well as reducing the lengths of the tonic-clonic seizures, which he continued to have at night.
And then, a few months later, the Epidiolex stopped working. The hope that was reinvigorated dissipated at the click of a finger. Murray reentered into a non-convulsive state and was admitted into the hospital in January 2019.
With Murray’s future in doubt and with the doctors’ refusal to prescribe a THC-based oil on the NHS, desperation set in — Mrs Gray took matters into her own hands. In March 2019, she embarked on her first trip to Holland to smuggle THC-based oil illegally back into Scotland without a medical prescription.
“I would do anything to help him,” insists Mrs Gray, “I thought it would help from what I had researched and they completely refused to help me get it, so I had no other choice but to go and get it myself, and I am so glad I did.”
Risking a criminal record and jail time, Mrs Gray was willing to put her life and wellbeing on the line to help her son.
Many have attempted to get hold of medical cannabis, but unlike Mrs Gray, as soon as they try, most give up hope. The latter was the case for Charlotte Hart, a sufferer from multiple sclerosis who was denied the opportunity to try Sativex on the NHS.
“I asked my doctor about Sativex, and they said my spasticity wasn’t bad enough,” says Hart, “I think it’s mega-expensive anyway so I probably wouldn’t have been able to afford it, but it would have been nice to test it out and see if it worked.”
Hart also asked her doctor whether CBD could help her symptoms, but she was told they can’t recommend it — even though many fellow MS sufferers told her to use CBD. She continued: “I am in a Facebook group, and lots of people were telling me I should try CBD oil, so it’s weird that they [doctors] don’t even mention it.”
Fortunately, after three months of illegally obtaining the oil and tireless campaigning, Mrs Gray heard the news she had been waiting two years for. She met with a specialist private neurologist in London who prescribed her the THC-based oil her son needed.
While Mrs Gray is grateful she can now get access to medical cannabis treatment for her son legally, there is still the overwhelming problem of financing the prescription. She spends £1,400 a month on THC oil. And travel isn’t easy either. She has to make her way from Edinburgh to London every consultation, resulting in more expenses and more stress.
“The prices are just crazy,” said Mrs Gray, “There is the option for an oil that is half the price of the one I’m using currently. But it is made using a different extraction, and it uses a different oil instead. When you take this all into consideration with Murray seizure-free, I am too scared to swap anything — I don’t want to rock the boat.”
Mrs Gray points most of the blame at the Dutch government and the Office of Medical Cannabis in Holland for overpricing the oils. But she is still angry that the UK government and big Pharma won’t step up and start production in this country to reduce the costs for patients.
Currently, the UK is the biggest exporter of medical cannabis in the world, cultivating 44% of global cannabis plants according to the UN’s International Narcotics Control Board (INCB) with most being exported to the US.
“GW pharma has acres and acres and acres of it growing [cannabis],” said Mrs Gray, “they make Sativex for MS, which by the way, is still a lottery to get hold of. They should be making it over here for a lot cheaper, and then more kids would have access to it.”
As a result of the extortionate prices currently in place for the majority of medical cannabis users, Mrs Gray agrees that she has been tempted to purchase street cannabis oils illegally, which comes in at a far lower price than pharmaceutical grade products.
“I still get offered oil off people even today — there are still so many people making it. I knew if I took any kind of street oil, then I could land myself in a serious situation and have Murray taken away from me. This is what I was told, so I had to go with the pharmaceutical product.”
Although costs are bank-busting for the majority of household incomes, it has been seen to improve. Before the laws changed for NHS prescription last November, patients had to pay astronomical amounts to acquire cannabis-based prescriptions.
Racheal Rankmore, the mum of 17-year-old sufferer of epilepsy, Bailey Williams, was widely reported in the media to pay more than £4,000 a month to pay for privately prescribed medical cannabis from overseas.
Mike Barnes, a professor in neurological rehabilitation and clinical director of The Medical Cannabis Clinics, explains medicinal cannabis and cannabis-based products are “expensive for clinics to access”, meaning prices for patients have to be “marked-up accordingly”.
According to the Hannam & Partners equity research report published in Cannabis Primer, prices in the EU are paid at a premium due to the “lack of companies producing EU-GMP quality cannabis flowers and oils”. While this problem is still evident in today’s market, the report shows “downward pressure on medical cannabis prices”.
Even more significantly, the prices from April 2019 to July 2019 plummeted from 2.5 to 1.7 GDP, which is the biggest fall in price since medicinal cannabis has been permitted for manufacturing and export in the EU. The report suggests this is due to “an increasing amount of products becoming available” and “government agencies seeking value for money”.
This downward trend is predicted to continue as medical cannabis becomes more accessible and new investors look to enter the market.
Alexej, CEO of Alphagreen, the largest alternative medicine market in the UK, is hoping to speed up the transition in Europe. He said: “In the next five years, Alphagreen will become more and more active in the medical cannabis space. We are hoping to leverage new digital infrastructure and to also enable an acceleration of growth, which at the moment, is very very slow.”
But the buck doesn’t stop at finances. The NHS states in its new approval of cannabis-based medicines that prescriptions can only be facilitated by ‘specialist’ doctors, but currently, this sector within medicine is niche and in its infancy stage. There aren’t enough qualified doctors who have the knowledge required to prescribe cannabis for medicinal use.
As a result, there are hundreds of people stuck on waiting lists tirelessly anticipating access to the treatment.
“Doctors are ignorant about cannabis, they don’t understand it”, said Professor Barnes, who’s report, ‘Cannabis — The Evidence for Medical Use”, has been influential for the drug policy reform on medical cannabis, “This isn’t a criticism, I wouldn’t want my doctor to prescribe it if they didn’t know anything about it. We can get around that problem by education, which is why I am focusing so much on the education of doctors.”
Professor Barnes believes every medical school has a duty to explain how the whole-body works, including the endocannabinoid system, a crucial exponent of the mammalian nervous system which cannabis stimulates.
“In medical school, students learn a lot about the dopaminergic system, the gabaergic system and the opioid system which are of equal importance,” explained Professor Barnes, “but the endocannabinoid system controls all of them. So, not to teach about it is patently ridiculous.”
Education is evidently problematic, but alongside the current NICE guidelines, it almost makes it impossible for doctors to prescribe medical cannabis on the NHS. In August 2019, it released an interim review that stated medical cannabis should not be used for a variety of conditions.
Medical cannabis is also currently unlicensed, which means a doctor is liable for any adverse side effects which compromise a patient’s health. With licensed medicines, there is a safety net for doctors, in that the liability of any medical problems from a prescription falls onto the pharmaceutical company.
“You just wouldn’t take the chance at the moment,” said Penelope Howard-Tripp, who is a doctor on the NHS, “It’s not that I don’t believe that medical cannabis could work for some illnesses, it’s because it’s an unlicensed medicine, and we could be sued if anything goes wrong. Unless you have expert knowledge on the subject, it’s a straightforward decision to make.”
Professor Barnes also weighed in on the NICE guidelines and the problems facing doctors when making a decision of prescribing medicinal cannabis.
“They are written by people who clearly don’t understand what they are talking about, and just rely on double blanched super controlled studies as the only standard of judging medicine, and I think that is ridiculous for a plant-based product.”
Many are clearly outraged by the current restrictions, but there is still support for the current regulations on medicinal cannabis.
England’s former chief medical officer, Dame Sally Davies, said in 2019: “I have worries that we have opened up a can of worms and there is a belief it can work for some conditions when it can’t. If it’s proven, then go ahead and use it, but I really have concerns about safety.”
There have been some studies that suggest THC — the psychoactive element in cannabis — could have adverse side effects to the developing brain.
The ratio of THC to CBD is 20–1 in Murray Gray’s product, as this is seen to be the optimal amount to treat certain severe epileptic conditions. But Mrs Gray is adamant that she has nothing to worry about — she said: “He has absolutely no side effects from the cannabis oil from Holland, no side effects whatsoever. He had side effects off everything [other medications] else.”
While the restrictions surrounding medical cannabis have patients tied up in chains, change seems to be on the horizon. Prohibition Partners figures suggest that medical cannabis is set to be worth 1bn by 2024, servicing 340,000 patients.
Research is expanding rapidly too. Prof. Barnes stated there are currently 40,000 scientific reports on cannabis which have been successfully conducted.
But many can’t wait until then before their health deteriorates, many don’t have the resources to fund the extortionate costs of a private prescription, and many aren’t aware medical cannabis is a viable option.
Despite Mrs Gray’s son’s return to good health after the prescription of medical cannabis, she still continues to campaign. And she won’t stop.
“I hope many more kids can get access to medical cannabis in the future, everyone deserves to have a chance in life.”
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