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Two years on: what happened to our prescription bid?

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Children with severe epilepsy

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.

Bailey

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.

Murray

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.”

Ben

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.”

Charlie

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?”

Zak

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.”

Fallon

“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.”

Eddie

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.”

Case Studies

Patient Voices: Gillian – “I can’t talk to other mums about cannabis in the playground”

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Medical cannabis patient, Gillian Flood
Medical cannabis patient, Gillian Flood

Access to medical cannabis has allowed Gillian to be a better mother to her six children, but despite having a legal prescription she is still fearful of speaking out and facing backlash.

After barely being able to move off the sofa due to debilitating chronic pain and the side effects of prescription drugs, Gillian Flood can drop her children off at school again. 

She no longer has to rely on her husband to take care of their six children – several of whom have additional needs – and can give them the routine they need.

“I can get up and take my kids to school. I can make them dinner and spend time with them doing things we enjoy,” says the 39-year-old.

“If I was having a flare, my kids wouldn’t understand that I wasn’t in control of that and it was really difficult, whereas as now it’s all manageable.

“I’m not just lying there too sore, or suffering the effects of the tablets I was on. Now even when things are difficult, it’s easier.”

Gillian was prescribed cannabis to manage the symptoms of fibromyalgia in 2020. It has reduced her pain and nausea so can get out of bed in the morning, and also helps with the symptoms of PTSD and depression.

“Even if I’m still in pain, I feel calmer and more in control. I know that I’ve got this helping hand,” Gillian explains.

“It stops the nightmares, that’s the biggest thing. I can sleep through the night and not wake up sweating and shaking – and if you can get a good night’s sleep it makes the next day a lot easier.

“I can get pleasure out of life, it means so much to me that finally I have something that not only improves things but doesn’t have any of the terrible side effects I have previously suffered on other medication.

She adds: “It may not be perfect but it’s a whole lot better than what it was.”

Gillian has experienced mental health issues since she was a teenager, but after her children were born her health deteriorated. 

It took six years of living with unexplained, debilitating pain – with doctors blaming it on the idea that she had “strained” her body by having children – before she was diagnosed with fibromyalgia in 2018. 

“I was getting all kinds of crazy pain, one side of my face had dropped and I was completely numb down one side of my body, I knew there was too much going on for it just to be a result of having children,” says Gillian.

She was initially prescribed gabapentin, which left her with “horrific” side effects.

“I felt like I was drunk all the time, I was staggering about and my speech was slurred,” she says

“Then I was on pregabalin but that didn’t work either and turned my brain to mush. It was really hard to think or concentrate, so eventually I came off everything.

Gillian continues: “I was in pain and felt sick all the time and I was either in bed or on the couch. I couldn’t play with the kids and my husband was having to do everything.”

She had previously raised the idea of cannabis with her doctor but had been told it was “not helpful” and might actually make her mental health symptoms worse.

“They said they wouldn’t treat my mental health problems if I was going to take cannabis,” she recalls.

“It meant it wasn’t an option for me, even though I thought it would work, because I’ve got kids in the house I felt a lot of pressure to do things legally.”

Although there were no medical cannabis clinics in Scotland at the time, Gillian researched getting a prescription online and found the process relatively straightforward. However, the costs associated with having to fund it privately is still a struggle for her, despite them slowly coming down.

“It’s challenging to afford it,” she says. 

“Some people have an attitude of ‘well it’s okay for you’ but we’re all making sacrifices, it’s not coming easy to anybody. 

“For the majority of us we have to cut things from other areas in our life to be able to afford it or borrowing money and running up debt.

“Yes, you get access to consistent medicine and see a doctor which is great, but another part of it is just because you don’t want to be breaking the law and that shouldn’t come at such a high cost.”

Gillian came across the patient-run advocacy group PLEA (Patient-Led Engagement for Access) last year, after looking for other cannabis patients she could connect with.

“I didn’t know any other patients and it was hard to find out about the different treatments,” she says.

“If you get put on gabapentin you can go online and read about millions of patients who are on it and learn about their experience.”

PLEA was founded in 2020 and is run voluntarily by a team of experienced patient advocates to challenge the inequalities in access to cannabis-based medicinal products and improve things for patients. 

“It’s helped massively to know that there are other people in the same position.

“People don’t talk about cannabis, it is frowned upon,” Gillian continues.

“I can’t talk to mums about it in the playground, but it’s normal to say at 11am ‘can we get the wine open yet?'”

Despite those close to her having been supportive of her prescription, Gillian still fears the stigma from people who aren’t aware of the medicinal benefits of cannabis, particularly other parents at the school gates.

“My family are all supportive, they’re just glad I’m feeling a bit better and even some friends who were anti-cannabis have actually changed their attitudes once they learned about the fact that it could be a medicine,” she says.

“But even though I have a prescription I wondered whether I should remain anonymous for this interview because I don’t want people to think bad of me.”

Gillian is now a member of PLEA’s Patient Working Group, which is helping to ensure patient’s voices are heard as the cannabis industry develops and access improves, which is something which can’t come soon enough for her.

“I know things take time, but I would like cannabis to be seen as more of a first line treatment rather than a last resort,” adds Gillian.

“I don’t blame the doctors, they don’t have the knowledge or are just going on what they’ve been told, but it’s wrong that they can prescribe these tablets that are really harmful and addictive, when there’s another option.

“If things had been different, I could have saved years of my life when my kids were young that I will never be able to get back.”

 

In our Patient Voices series, we’re sharing the stories of members of PLEA’s Patient Working Group.

Read Eppie’s story here 

Find out more about the PLEA patient working group here & visit pleacommunity.org.uk  for further resources 

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Case Studies

Dad-of-three says cannabis helped him beat terminal cancer

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Scott Davis Life Oils
Scott Davis, used cannabis in his battle to beat cancer

After being diagnosed with terminal cancer, Scott Davis started taking cannabis oil. Despite being given 12 to 18 months to live, two-and-a-half years later the tumour has “disappeared”. 

In the summer of 2018 at the age of 38, Scott Davis started experiencing stomach cramps and loss of appetite. When he started losing weight without explanation, he decided to visit his doctor.

Over the following weeks, the father-of-three was in and out of hospital for a number of inconclusive tests and consultations until his doctor diagnosed him with inoperable colon cancer.

As a rare and aggressive form of cancer, his doctor informed him that he had between 12 and 18 months to live.

With his wife pregnant and due to give birth in three months, the news was a horrendous blow for Scott and his family.

“I was getting stomach cramps and things like that, but the last thing you think of is cancer,” Scott told Cannabis Health.

“They got me in the room that day and gave me the news. They said it was terminal and there was nothing they could do.”

Scott was in a state of shock. He couldn’t believe that he could go from being completely fit and healthy to being diagnosed with a terminal illness within a matter of months.

“You’re in a daze, it’s like a bomb has gone off and you can hear the ringing but everyone else around you are just getting on with their lives while you’re still sat there dealing with the aftermath,” he said.

“It takes a while for it to sink in.”

Despite not having any treatment options available to him, Scott didn’t lose hope and although he was told to prepare for what could be his final Christmas, he remained optimistic.

“I’ve never thought ‘oh God, this is it, I’m cooked’,” Scott said. “I always thought there must be something; there had to be something.

“‘Maybe I could be lucky’, I thought. Maybe I could be one of these people that uses these alternative methods and finds the key to recovery and goes into remission.”

His Dad was the first person to suggest cannabis.

Later, a nurse at the hospital handed him a piece of paper reading ‘Rick Simpson’, a prominent Canadian cannabis activist who reported that cannabis oil enabled him to recover from skin cancer.

Scott called his friends and a day later they were at his bedside with CBD and THC oil.

Before his course of palliative chemotherapy began, Scott started taking CBD and THC at high doses; he said he did not have time to build up his tolerance.

“The only reason why I went hell for leather is because I’ve got three children and a beautiful wife. I’ve got a lovely life and I wasn’t ready to leave it,” he said.

Scott was also put on a course of morphine and Tramadol to combat the pain. With the combination of powerful opioids and strong cannabis oils, Scott said he looked like a “zombie” to visitors, but within a matter of weeks he noticed that he was needing less and less pain medication.

Scott Davis cancer

Scott Davis during his treatment for inoperable colon cancer

As he gradually came off the morphine and Tramadol he found that the CBD and THC kept the pain at bay without the negative side effects of opioids.

“The more I started taking [cannabis oils], the fitter I started feeling,” Scott said.

“At one point I couldn’t even walk around my hospital bed without getting out of breath.

“My main goal in the hospital was to have a shower on my own and not use the disabled seat.”

After six sessions of palliative chemotherapy, Scott was allowed home to see his daughter being born and spend what he thought could be his last Christmas with his family.

The palliative chemo shrunk Scott’s tumour by 50 percent, offering a glimmer of hope for him and his loved ones.

Several months later, he received more good news, when doctors told him that the tumour was stable and contained, and they could keep it under control for up to ten years. But Scott was determined to be cancer-free.

“I couldn’t know that I had something there even if it was stable and contained,” he said.

“That wasn’t good enough. I was only 38, I didn’t want to think that I only had until 48 – that’s still young.”

Scott continued taking CBD and THC along with the other medications and supplements that were helping him beat his battle with cancer, including vitamin D, vitamin B17 (apricot seeds), immune-boosting mushrooms and fenbendazole, an anti-parasitic veterinary drug that has gained attention for its potential to inhibit tumour cell growth.

At the beginning of 2020, 16 months after his course of palliative chemo, Scott was given the remarkable news that the cancer was in remission.

“For them to say that the tumour was there but showing no [signs of] active cancer was an incredible moment,” he said.

“It was an incredible feeling to know that everything I’d read about the things that I’d been taking had actually started to work; it had actually benefited me.”

Since then, Scott says the tumour has completely “disappeared”, leaving nothing but scar tissue behind. As his test results have continued to show improvement, he says he is beginning to enjoy life again.

“With cancer, unfortunately, you’re always waiting for the next test or the next scan,” Scott continued.

“But as they go on and I get more positive results and my blood tests are all coming back better than average, it starts giving you the confidence to relax a little bit more and enjoy life again. You haven’t got that weight on your shoulders all the time.”

Scott Davis cannabis

Scott Davis’ daily doses of CBD, THC and other supplements

Although he believes cannabis medication played a vital role in his recovery, it was the synergy between cannabis, chemotherapy, fenbendazole and the numerous other supplements he used that allowed him to beat the disease.

“I’ve never said like it’s this that cured me or that that cured me,” Scott said.

“I believe it’s been a combination of the palliative chemo, the cannabis, the diet change, and maybe even the fenbendazole towards the end to snuff it out.

“I honestly think the combination of the alternative and the conventional can work side by side.”

Scott is one of many who have claimed that cannabis has played an important role in their cancer recovery.

However, as an illegal and expensive substance, THC-containing cannabis products remain out of reach for many cancer patients. Meanwhile, due to a lack of regulation, some find it difficult to source high-quality CBD that offers the benefits that they have read about.

Scott says he was “lucky” to have taken out life insurance which gave him the freedom to look for alternatives.

“Due to the nature of the CBD, and it only just getting over to the UK it was really difficult to find a trusted brand,” he said.

“[Life insurance] allowed me to spend a lot of money buying CBD from the wrong places and going down the wrong routes, but I was fortunate enough that I had the finances to not worry about things like that.

“I would never have been able to afford the amount that I’ve [consumed] if it wasn’t for that insurance money.”

Scott has now retired from his career as a self-employed builder and is running his own CBD brand, Life Oils, which he launched in 2020 with friend and now business partner, Matt.

The duo say they aim to produce high-quality products that they themselves would use and help people navigate their way through the often complicated world of CBD.

“We’re at the point where we’ve got something that we know is good and we know can help people,” Scott said.

“Now, we’re just trying to get it out there in the right way.”

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Case Studies

“CBD allows me to function” – biker ‘died’ three times after freak road accident

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Gary Brennan pictured with wife Shirley
Gary Brennan and wife, Shirley set up a trauma support service after the accident

After a serious motorbike accident, Gary Brennan almost lost his life, undergoing 54 operations to fix his broken body. Gary speaks to Cannabis Health about the “life-changing” accident and how CBD helps to manage the pain 11 years on.

On February 28th 2010, Gary Brennan collided with a car while riding his motorbike.

He broke both shoulder blades, tore his liver, crushed his kidney, shattered his pelvis fractured his spine and suffered from bleeding on the brain and a collapsed lung.

These are just some of the life-threatening injuries that he sustained in the accident.

So severe were his injuries that he was declared dead at the scene of the incident. Paramedics were able to resuscitate him before he was helicoptered to Leeds General Infirmary where he underwent emergency surgery.

During the operation, his heart stopped twice and his family were told that he may have just a few hours to live. He was put into an induced coma and relied on a life support machine to breathe.

Miraculously, Gary survived.

His condition stabilised enough to come out of the coma, but since then he has undergone a total of 54 operations.

When Gary’s condition stabilised enough to come out of the coma he was in excruciating pain. Having battled injuries that doctors deemed barely survivable, the 63-year-old was administered a plethora of drugs to keep the pain under control and has since undergone a total of 54 operations.

“The accident was life-changing to say the least,” Gary told Cannabis Health.

Gary Brennan underwent more than 50 operations

“I got through the operations and everything else, and then I got to the stage where I was lying in bed, zoomed out my head every day of my life with the drugs that I was taking.”

The cocktail of medications including morphine and ketamine kept the pain at bay but according to the father-of-four, it was “destroying” his brain.

Bed-bound, in pain and suffering from a relentless medication plan, Gary slipped into a period of depression and at one point considered suicide.

“I don’t say this lightly,” he said. “It brings tears to my eyes just thinking about it; that I actually even considered it having been a fit, active father-of-four and grandfather-of-six.

“But that was what the drugs were doing to me.”

Gary recalls waking up in the morning “groggy as hell” and in agonising pain until he took his medication.

“All it would do was numb my mind so that I didn’t feel the pain,” he added.

Knowing he had to find an alternative, he looked into CBD.

Although he was sceptical at first and questioned whether the benefits were merely a placebo effect, Gary found that CBD was helping reduce the pain while still allowing him to keep a “clear” head.

“Now I’ve got clarity, I’ve got a clear head, I can get out of bed in the morning. I still get the twinges but it’s not as severe pain,” he continued.

“The pain is always going to be there, but it’s handled in a different way. It doesn’t numb your brain, but the actual place that’s aching. It gives me relief and allows me to function.

“It changed my outlook on pharmaceutical drugs.”

Gary has now come off all prescription drugs apart from one, which he takes “now and then” to lower his blood pressure. Instead, he takes four capsules of CBD each day, equating to 720 milligrams.

Eleven years on from the crash, he has founded his own CBD brand, Brain Body Balance, and is working with US company, Ananda Scientific, to bring its patented Liquid Structure CBD formulation to the UK.

Ananda claims that the nano-sized technology makes its CBD formulation up to 20 times more bioavailable in the first 30 minutes than standard CBD. This is down to its “non-destructive” shell which contains the CBD and is able to pass through the gut and liver without being broken down. The shell only disintegrates when it reaches the small intestine, allowing for a greater amount of CBD to enter the bloodstream.

Ananda’s pharmaceutical-grade CBD is currently undergoing clinical trials to test its efficacy for treating pain, diabetes and mental health conditions including PTSD and anxiety.

Meanwhile, the nutraceutical arm of the company has launched over-the-counter products in the UK and the US through brands like Brain Body Balance.

Gary with one of his six grandchildren.

For Gary, producing a product with high bioavailability was a priority.

“I knew the product itself worked, but actually getting it into the bloodstream where it does its job is the hardest thing to do,” Gary said.

“You have to use stronger and stronger doses in order to get it into your bloodstream.”

Alongside his CBD venture, Gary set up the charity, Day One Major Trauma Support to limit the impact of trauma on patients and families in hospitals across Leeds and the wider Yorkshire area.

“When I was lying in hospital, the doctors would come around once a day and say, ‘how are you feeling, Gary?’, ‘can you feel your toes?’. Then they would say, ‘see you tomorrow’ and off they go,” he said.

“The nurse comes around, gives you your pills, then your family come in, pat you on the head and say it’ll be okay. Basically, that’s all you get.”

Aware of the lack of support, Gary set out to create a service that helped those like him who had suffered from major trauma. The charity provides financial assistance, legal advice and practical and emotional support.

Off the back of its success at Leeds General Infirmary, the charity will now be rolling out its services in all 27 major trauma centres in the UK.

Gary added: “Any help is there first-hand, no matter what, so nobody’s left in the lurch.”

 

 

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