It’s been two years since medical cannabis was legalised in the UK but all of these children – and dozens more – have been refused a prescription on the NHS. We asked why.
On 1 November 2018 medical cannabis campaigners celebrated. The treatment that was saving the lives of their loved ones was finally legalised in the UK, after months of rallying politicians, national TV appearances and telling their heartbreaking stories to the press. No one thought that two years on they would still be fighting.
In the two years since the legalisation only three NHS prescriptions have been issued and parents have spent tens of thousands of pounds funding their child’s medication each month. Some have sold their homes, begged friends and family for money, risked everything pursuing legal action and spent the hours that they should have been with their sick children calling for change.
Seven families from the End our Pain movement, initially set up to campaign for the law change, told us why they have been refused access on the NHS.
It’s November 2018. A then 16-year-old Bailey, is in the high dependency unit at his local hospital having another seizure. His mum, Rachel Rankmore and dad, Craig Williams, have been up for 48 hours straight monitoring their son in case the unimaginable should happen.
A consultant neurologist chooses this moment to ask the family if they want to have a conversation ‘about the other stuff?’
Rachel knows what they mean.
Her son has been taking hemp oil for two years but despite making huge improvements at first, his condition has plateaued. He is now having hundreds of seizures a day. He needs full extract cannabis oil.
Bailey has a rare form of epilepsy known as Lennox Gastaut Syndrome. For most of his life he has had to wear a crash helmet to protect his head from drop seizures, and being blue-lighted to hospital has been a weekly occurrence.
Before he tried Charlotte’s Web CBD, doctors told Rachel and Craig there was nothing left they could do.
“The hospital offered to give us epidiolex [a drug containing CBD which was approved for use in the UK last year], but we knew we needed full extract cannabis oil,” remembers Rachel.
“I asked them why they wouldn’t prescribe when they knew there was nothing left for Bailey to try.
“At first they said it was because THC would ‘damage his brain’, but when I pushed them the answer I got was that they helped write the BPNA (British Paediatric Neurology Association) guidelines and couldn’t go back on them.”
BPNA guidance for clinicians says that products with ‘higher proportions of THC (>0.2%)’ have ‘no randomised controlled clinical trial evidence of safety or efficacy’ in children and young people with epilepsy.
It adds that clinicians should not feel ‘under pressure’ to prescribe cannabis based medicines until they have undergone clinical trials.
Rachel asked for a second opinion from another neurologist at the hospital. Again the answer was no.
Bailey has had a private prescription for medical cannabis for two years now. He has had no emergency trips to the high dependency unit, a reduction in his antiepileptic drugs, he is attending school, engaging, interacting in conversations, voicing what he wants, playing computer games and going out with his support workers. As Rachel says ‘living his best life’ for the first time in 16 years.
His prescription is only afforded through the fundraising efforts of his friends, family and followers, but due to the coronavirus restrictions they haven’t been able to organise any events this year. The funds for Bailey’s medication will run out in December.
Rachel has been told by a hospice that when he inevitably ends up in hospital with uncontrollable seizures the most likely line of treatment would be anesthetic and pain management.
“They would write my son off rather than give him a prescription for a medicine that has proved to work for Bailey, that is perfectly legal and he has obtained privately for over a year,” she says.
“Our son’s life is in danger because the law passed and guidance written have failed him.
Karen Gray was also told by her consultant that he wouldn’t prescribe full-extract cannabis for her son Murray, eight, due to the BNPA guidelines.
Murray, who has Doose Syndrome has been seizure-free for 17 months since he started taking full extract cannabis oil.
He looks unrecognisable to how he did before. He is speaking, attending school and no longer needs the use of a wheelchair.
But when his case was referred to the Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) it was recommended that he be weaned off the oils and put back on epidiolex.
Karen says she has always accepted the consultant’s decision not to prescribe, but refuses to take him off his current medication, when epidiolex had previously left him in epileptic status and confined to a hospital bed.
“He’s always said he doesn’t want to go against his peers, which I’ve always accepted, but I obviously wasn’t going to change anything when Murray has been seizure-free since June 2019,” she says.
“I asked for the RESCAS decision to be appealed so I could pursue a shared care agreement [which enables access to a prescription through the NHS].”
Murray’s consultant recently resigned from his care claiming the ‘stress of the situation’ was putting him under too much ‘strain’.
He is now under the care of the ‘complex epilepsy team’ made up of several neurologists, who have said they feel it would be ‘reasonable’ to put Murray’s case to RESCAS again in six to 12 months.
“That’s another six to 12 months of us funding his prescription ourselves,” says Karen, who currently struggles to find the £1,400 a month.
“We can’t afford this long-term but we’re terrified that if we take him off it he will start having seizures again.”
A lack of clinical trials is one explanation for the NHS not prescribing, which comes up often.
Joanne Griffiths is also trying to pursue a shared care agreement for her son Ben, 11, but is fighting a losing battle. She first asked for full-extract cannabis following the law change in 2018 but says she got ‘a flat no’.
“I was told they had a clear policy that they were not going to prescribe these drugs until more trials were done.
“They constantly quoted the BPNA guidance,” says Joanne.
She and her husband considered going down a judicial route but decided it would be better to work with the doctors, who had cared for Ben, who has severe epilepsy, cerebral palsy and autism, all his life.
“We were eventually discharged with a letter saying we had asked for THC products that were ‘illegal to prescribe’ – which they weren’t,” she continues.
“Every child is different but Ben wasn’t being treated as an individual.”
A year down the line Joanne has just received a letter from the Greater Preston Clinical Commissioning Group (CCG) declining her funding request for a shared care agreement between Ben’s GP and private neurologist, as it was ‘contrary’ to policy and no grounds for ‘clinical exceptionality’ were found.
Joanne is now considering legal action.
“It’s the only thing I can do,” she says.
“They know that Ben has got no other treatment line left.”
One family who are taking this very risk is Matt and Ali Hughes, parents to three-year-old Charlie.
Before they discovered cannabis medicine last May, Charlie, who was diagnosed with West syndrome at 10 weeks old, was having up to 120 seizures a day. Now they are down to between 10 to 20.
The couple are seeking a judicial review of the NICE (National Institute for Health and Care Excellent) guidelines which prevent doctors in the NHS prescribing medical cannabis and leave them forced to fund the £1,200 prescription each month.
NICE has acknowledged the need for more research into the use of medical cannabis and supports NHS England’s call to collect evidence from randomised controlled trials and observational studies.
But the guidelines state that until there is clear evidence of the safety and effectiveness of cannabis-based medicinal products, specialist doctors need to consider individual patient circumstances and risks and benefits in choosing treatments.
Matt and Ali will argue that the existing evidence – while mostly anecdotal and low quality – should be enough to support doctors to prescribe full extract cannabis oil for severe treatment-resistant epilepsy.
If they are successful the guidance could be redrafted, which they hope would give some doctors the confidence to write the prescription.
“I’ve spoken to clinicians that say they would prescribe if they could but I think there is a feeling that if they step out of line, their trust will block it anyway,” Matt told Cannabis Health earlier this year.
“A lot of clinicians are prescribing it privately, just not on the NHS. So why is it fine for children to take it privately but for the NHS we need all this extra evidence?”
In 23-year-old Zak’s case, it wasn’t so much that his doctor didn’t accept that there was evidence out there, but that they ‘didn’t have time’ to read it.
“I’ve asked our consultant several times why they won’t prescribe on the NHS,” says Zak’s dad, Benedict Lamb.
“They always say that the research hasn’t been done to prove that it’s safe.”
Benedict continues: “As parents we’ve become quite knowledgeable about the subject. Over the last 15 years in Canada and Israel there have been several published studies. I told them all the research exists, but they said they didn’t have time to read it.”
Benedict feels lucky in a way, even though Zak has Dravet Syndrome and autism and is severely disabled, he has responded well to epidiolex where many children do not.
Age 15, doctors told the family he only had six to 12 months to live, but thanks to the medication eight years on he is very much alive, attending a specialist college and continuing to make improvements.
CBD saved Zak’s life, but he still has seizures. And with every seizure there is a risk that he might not come back from it.
“Every time they have a seizure, it comes with the risk of more damage to the brain, nervous system or even death,” says Benedict.
“When he was younger Zak used to have very serious fits on a regular basis, but thankfully that’s stopped since he was put on epidiolex.
“Although he still has seizures, they are all around the three minute mark, which means that he doesn’t end up in hospital. We’re in a much better place than we were, but he hasn’t got any better.
He adds: “The goal for all of the parents in the group and beyond is for our children to be seizure-free.”
It is hoped that an oil with a higher concentration of THC will help to control Zak’s seizures and he is now due to trial a new product, which has been funded by the pharmaceutical company for six months.
But then what?
“They could turn around and say its X amount,” says Benedict.
“And then we’re faced with balancing the financial stress against our child’s health.”
“It’s all about the money,” according to Fallon’s mum, Elaine Levy.
If anyone should know it’s her.
Elaine sold her house to fund her daughter’s medical cannabis prescription with the financial pressure of finding the £2,200 each month leaving her “broken” – both emotionally and financially.
The family are now staying at Elaine’s sister’s flat, with no idea how long it will be until they can look to find a place of their own.
Fallon, 27, who has had Lennox–Gastaut syndrome since the age of four, went from being ‘zombie-like’ on a cocktail of antiepileptic drugs and barely able to leave the house, to enjoying a full day out with her family for the first time thanks to medical cannabis.
Elaine says Fallon’s former consultant, who is one of the country’s leading epilepsy specialists, has tried ‘every way he can’ to help them.
“When we got the letter from NHS England to say we could have medicinal cannabis, Bedrolite was on the tarif as one of the drugs we could have,” she says.
“He wrote the request out there and then and within half an hour he received a response refusing it.
“Then he put in an independent funding request to show that Fallon is different and exceptional, but this was also declined by the CCG.”
Elaine has tried Fallon on a cheaper oil but it wasn’t as effective and she couldn’t bear to watch her daughter falling over and ‘smashing her face on the floor’ several times a day.
She now just has a few weeks of Fallon’s medication left and doesn’t know what will happen after that.
It was suggested that if she films Fallon falling over when she is off the oil, this may help build her case.
But Elaine believes that the ‘excuses’ about a lack of evidence, are just masking the real problem – that it’s too expensive to fund on the NHS.
“There is so much evidence, we are the evidence,” she says.
“It’s not about the guidelines, it’s about the money and everything else is just muddying the water.
“The NHS has not got the budget for it. Too many people would need it and they would be inundated.”
A leading pharmacist is said to have told Elaine that she ‘shuddered’ when Sajid Javid legalised medical cannabis, knowing that there wouldn’t be the funding.
It came as no surprise to Elaine.
She adds: “My consultant said to me in his own words when I left his office for the last time, if it was ‘£5 a bottle I would be prescribing it for everyone who needs it with intractable epilepsy’ – which says it all really.”
Back in 2018 Ilmarie Braun still had hope. She was alongside other parents, including Hannah Deacon, who were tirelessly campaigning for the law change.
“For a while it all moved fast and things felt really positive, it felt like we were being listened to,” she says.
Ilmarie and her husband Alex met with MP Nick Hurd, who at the time was setting up a panel of specialist epilepsy experts to deal with cases ‘just like Eddie’.
Eddie, five, was given a diagnosis of West syndrome at seven months old. He spent the first years of his life on up to five different types of antiepileptic drugs until his parents tried him on Hayley’s Hope CBD from America.
As he was weaned off the pharmaceuticals, with no deterioration in his condition, they saw his personality emerge for the first time.
But the CBD alone wasn’t enough to control his seizures.
Eddie’s pediatrician agreed to put an application in to RESCAS, but refused on the grounds that it wasn’t written by a neurologist and Eddie hadn’t yet tried epidiolex (despite the fact it hadn’t yet been approved for use in the UK).
When he started to plateau on the epidiolex, they asked again for a prescription of full extract cannabis oil. Their consultant took their request to the drugs and therapeutics committee at their local hospital. A panel of eight said no, unanimously.
According to Ilmaire, the pharmacist felt it would have been ‘immoral’ to ask them to write Eddie a prescription when they had already obtained a private prescription from a neurologist in London.
“They all claim to have every sympathy with us – we get all these different people saying we really feel for your family and what you’re going through – but they really don’t,” she says.
Ilmarie accepts the fact that theirs was a small hospital and staff didn’t feel they could be the first to prescribe when specialist centres such as Great Ormond Street were refusing.
She finds it harder to accept that the Government could do something to alleviate some of these families’ suffering, but chooses not to.
“There’s a huge amount of politics involved. Matt Hancock promised that he would help us and he hasn’t,” she says.
“Our doctors won’t even tell us whether our kids are going to be teenagers – we don’t know how long we have and yet they’re telling us we need to worry about possible psychosis later on down the line – it makes no sense.
“We don’t know what the future holds, but we know it’s not going to be easy. We’re angry that the Government won’t do something to alleviate that.”
Ilmarie speaks for many when she says a breakthrough feels as far away as it ever did.
“There’s a real mismatch between what was promised and what the reality is,” she adds.
“This is not what anyone was campaigning for.”
What the Department of Health told us:
The Department of Health is said to be ‘working closely’ with NHS England-NHS Improvement (NHSE-I) and the National Institute of Health Research (NIHR) to establish the clinical trials needed to ‘develop the evidence base to support further commissioning decisions’.
It adds that NHS funding decisions follow ‘clearly developed procedures’ that ensure the fair distribution of funding – prioritising medicines that have proved their safety, quality and efficacy. The latest NICE guidelines demonstrate a ‘clear need’ for more evidence to support prescribing and funding decisions, as the majority of THC/CBD products are unlicensed and have not demonstrated clear evidence of their ‘safety, clinical and cost effectiveness’.
RESCAS was established to support clinicians to ‘optimise treatment’ of refractory epilepsy but the service is ‘advisory only’ and the responsibility remains with the patient’s neurologist.
“We sympathise with patients dealing with challenging conditions and the decision on whether to prescribe medicinal cannabis is ultimately one for clinicians to make,” said a Department of Health and Social Care spokesperson.
“Since the law changed, two cannabis-based medicines have been made available for prescribing on the NHS for patients with multiple sclerosis or hard to treat epilepsies, where clinically appropriate. This follows clear evidence of their safety, clinical and cost effectiveness.
“However, more evidence is needed to routinely prescribe and fund other treatments on the NHS and we continue to back further research and look at how to minimise the costs of these medicines.”
“Cannabis is what helps me cope”
Cannabis Health speaks to cannabis and CBD entrepreneur, Susanne (AKA SusieHemp), about her thirty-year relationship with the plant and why she is now giving small doses of CBD to her non-verbal autistic son.
Susanne, a mother-of-three from Cheshire, has used cannabis since the age of 20.
Due to a number of traumas in her life, including the tragic passing of her partner, the 50-year-old says she has depended “heavily” on both alcohol and cannabis at points in her life.
She was able to stop drinking several years ago and hasn’t touched alcohol since. She did, however, continue to consume cannabis. She didn’t know why, she says, but it was “working” for her.
Eighteen months ago, Susanne was diagnosed with autism and ADHD and it suddenly made sense to her why she was benefiting from cannabis.
Although scientists are still in the early stages of research, anecdotal evidence and early studies suggest that cannabinoids such as CBD could help alleviate symptoms related to autism spectrum disorder (ASD).
Research into cannabis and ADHD is equally patchy, however, many people with the condition report that cannabis helps manage symptoms such as agitation, irritability and lack of restraint.
A research paper from 2016, for example, analysed just under three hundred online forum threads. I found that 25 per cent of posts were from people reporting the therapeutic effects of cannabis. Only 8 percent of posts reported negative effects.
“I self-medicate,” Susanne says over Zoom.
“I don’t drink, I don’t smoke [cigarettes], I have an addictive personality, I am autistic and cannabis is what has helped me cope.”
She continues: “Cannabis lifts my mood instantly. I self-sabotage and that’s all part of autism. I look in the mirror and I would hate myself because of the traumas that I’ve been through. But after taking cannabis I can focus, it just changes how I think from negative to the other way.”
Having researched the potential benefits of CBD for ADHD and autism, Susanne wondered if it could help her son, Lucas.
Lucas, who is 12-years-old, lives with non-verbal autism. It is clear from talking to Susanne how much she loves her son, however as a single mum caring for a child with such a severe form of the condition, it has taken a toll on her wellbeing.
“I can’t speak to anyone when he’s around. I can’t have relationships with people, I’ve lost a lot of my social life because he consumes all of my time,” she says.
“He terrorises the house, he destroys everything to the point where I’m in tears, but he’s my son.”
During the Covid-19 crisis, Susanne describes being traumatised as the lack of respite from her care duties caused her mental health to plummet.
“My mental health has declined a lot because I’m in a very difficult situation, she says.
“A lot of people don’t have to cope with what I’ve had to deal with during Covid.”
Lucas has been prescribed ADHD medication on several occasions, but Susanne describes these periods as being “dreadful” for her son.
“They suppressed his appetite so much that I actually saw him wasting away in front of my eyes,” she says.
“I got to the point where I just couldn’t deal with it.
“It wasn’t doing him any good. I thought, ‘why am I giving him these tablets?’ I had to make the decision to stop it.”
She made the decision to bring Lucas off of his ADHD medication two months ago.
Having experienced for herself the benefits of cannabis for addressing mental health issues, autism and ADHD, Susanne decided to try Lucas on CBD.
He now takes just one drop of CBD oil a day in the form of a patch which he wears in bed.
Susanne says she saw a change in Lucas instantly after he started taking CBD.
“I had to look for alternatives to help us as a family, nobody else can,” she continues.
“I noticed a huge difference in his behaviour. I see it visually, he’s more relaxed and calm.
“With the patches, I have noticed that he wakes up in the morning and sits in bed for a while. Normally he would be out banging the doors, but now he’s lying in his bed happy.”
Things also changed for Lucas at school. Regular reports from his teachers show periods of time where he was disengaged and eating very little or nothing at all. This coincided with the periods that he was taking ADHD medications.
After he started taking CBD, his behaviour at school dramatically improved. She recalls receiving a recent report praising her son for being “lively as ever, engaged and eating us through the house.”
In her professional life, Susanne built a successful career in social care, working with children with attachment disorder, special needs and autism.
However, due to the lack of support from social services, Susanne was forced to leave her job five years ago to care for her son.
“I couldn’t put Lucas into [care] during the holidays, so I ended up having to come out of work and as a result, I struggled financially,” she adds.
Living on a carer’s allowance of £67 pounds per week, Susanne was unable to afford her car and struggled to keep up with mortgage payments.
“It was a nightmare,” she says.
“I was a lone carer trying to pay a mortgage.”
She also had to face the stigma of being a cannabis user on a day-to-day basis. On one occasion a neighbour reported Susanne to social services, leading to police and social workers “invading” her home and personal life.
“People are allowed to take antidepressants and that’s okay, but if somebody wants to take cannabis, that’s wrong.
“I was put in a position where I was discriminated against for using cannabis. It led me to think, ‘why am I being pushed into a corner like this? I’m doing nothing wrong here’,” she says.
In an effort to find other people like her, Susanne turned to social media where she posted about her experiences as a mum of a neurodiverse child and her passion for cannabis and its medicinal benefits.
She continues: “I just couldn’t find other people like me. People would look at me and judge me and think I’m a stoner.
“But I held down a job for 37/40 hours a week, I brought up three children on my own, I have my own home.
“Why are people judging me? Because I choose to smoke a plant?”
Having built a dedicated following on social media over the past three years, Susanne is now setting up an online platform to promote the medical benefits of cannabis.
The website, called Susie’sHemp, will publish interviews with cannabis advocates and promote both her own and other cannabis brands.
Lucas will also be the subject of a blog about autism, neurodiversity and the potential benefits of CBD for autism.
“I want it to be a diversity of interests for lots of different people, pulling together those that I’ve worked with for the last three years and have helped me.
“A lot of people don’t know about the different cannabinoids and the endocannabinoid system. I have to advocate for it and the website will be a platform for educating people,” she adds.
“It’s about getting the message out there to society and ultimately, the nub of it is education.”
“My generation should try CBD – what do we have to lose?”
Annemarie Bousa, 81, on CBD for sleep and anxiety – and why others of her generation should give it a try.
Three years ago, Annemarie Bousa began suffering from an extreme nerve pain extending from her hip down into her leg.
Living in Germany at the time, the 81-year-old grandmother went through three operations to free up the nerve and reduce the pain, however none of these worked and she continued to live with the debilitating condition.
Labelled a “pain management patient” by her doctor, she was prescribed Fentanyl patches, a strong pain-relieving opioid which is infamous for being more potent than heroine and equally as addictive.
“I felt elated as the Fentanyl patch immediately dealt with the pain, so I went along with it all,” Annemarie told Cannabis Health.
“But now I’ve become reliant on it.
“Every three days I need to get the patch replaced. On the first day I always feel a bit light-headed, on the second day I feel normal and on the third day I start feeling a bit fragile, nervous and anxious.
“It’s always a bit of a rollercoaster, but it is better than the intense pain.”
Three years later, Annemarie was still being prescribed Fentanyl patches and continued to experience anxiety which was starting to affect her sleep.
She tried sleeping pills that were available from the pharmacy, but they had little effect.
“I didn’t sleep for three nights in a row,” Annemarie recalled.
“I was really worried and tired. I felt this pressure to sleep well the next night and it became a cycle of anxiety and extreme tiredness.”
At this point, Annemarie had moved to Portugal to live with her son, Ingo, and his young family. Since she had moved in, Ingo had started to notice that his mum’s sleep and anxiety were getting progressively worse.
As as one of the founding team behind the CBD company, Ardoa Organics, Ingo wondered whether the company’s broad-spectrum oils could help his mum, but was unsure about combining the cannabis-based supplement with her fentanyl medication.
“I did some research on how the Ardoa broad-spectrum night-time oil could help my mum to get better sleep and get her anxiety and stress levels down,” Ingo said.
“I was obviously sceptical because of the Fentanyl, so I did some research and found clinical trials where CBD and Fentanyl was given to patients to combat heroin cravings.”
Ingo was referring to a 2019 study which looked at CBD’s potential for reducing opioid cravings. It found that combining the two substances did not cause any serious adverse effects.
Two other studies, both published in 2015, also revealed that CBD had minimal adverse side effects when used with fentanyl.
With these initial studies giving Ingo the peace of mind he needed, he introduced his Mum to CBD, starting on one drop per night and increasing the does until settling on five drops.
“She had a full night’s sleep for the first time in days and woke up rested,” he said.
“Then, after a couple of days, her mood really changed for the better.”
CBD has been shown to help manage various health conditions commonly associated with old age, however many elderly people may be reluctant to try the supplement due to its association with cannabis.
Annemarie thinks people of her generation should “just try it”.
“People shouldn’t be afraid of it, especially people my age,” Annemarie said.
“What do we have to lose?
“We can only make ourselves feel better. For me, I take a little spoonful of medicine, which is 100 percent natural and legal, whenever I feel anxious and want a good night sleep. That’s it.”
Since Annmarie started taking CBD oil, other members of her family have also started taking the supplement for reasons such as managing arthritis and recovering from fitness training
“Taking a couple of drops of natural oil to help me sleep and feel much less stressed seems normal now,” she added.
“Maybe my story helps others who are sceptical to overcome their prejudice – that would be nice.”
“I experienced peace I’d never felt before”: The African encounter which inspired a CBD empire
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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