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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.

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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.

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“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.”

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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

ADHD Awareness Month: “There is more to ADHD than just annoying stereotypes”

To mark ADHD Awareness Month, we are focusing on patient’s stories of using cannabis to help their symptoms and manage their daily lives.

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ADHD: A pink pen highlighting the word ADHD in a text

For ADHD awareness month, Cannabis Health meets patients who use cannabis to treat the symptoms of the condition.

In the first of our series on ADHD, we meet Jakob Fullagar who was diagnosed with the condition as a teenager. He treats his condition with a combination of prescription medication and cannabis.

What is ADHD?

Attention Deficit Hyperactivity Disorder (ADHD) is a neurological condition. It can affect people’s behaviour in that they can seem restless, they may have trouble concentrating and seem impulsive. While a lot of people are diagnosed at a young age, there are adults being diagnosed with the disorder.

It is thought that ADHD presents in three different ways:

Inattentive: An individual may struggle to organise or complete tasks, pay attention to details, follow instructions or conversations. It also causes a person to be easily distracted or to forget parts of their daily routine.

Hyperactive: A person with hyperactivity may fidget or move or talk a lot. They can struggle with sitting still for a long period of time due to feeling restless. They also struggle with impulsivity and may interrupt frequently, speak at inappropriate times or fail to wait for their turn. They may be more accident-prone.

Combination: They present symptoms of both hyperactivity and inattentiveness.

ADHD: A person sitting at a table laughing

Jakob Fullagar

ADHD and Jakob

Jakob was diagnosed with ADHD as a teenager. As with a lot of ADHD children, he was labelled the naughty child and was placed into therapy. ADHD symptoms are often mistaken for emotional or disciplinary problems. It is estimated that ADHD children hear an average of 20,000 more negative messages than neurotypical children by the time they are 10-years-old.

In Jakob’s case, teachers also failed to recognise signs of the condition in his behaviour.

“I was a troublemaker as I caused problems and couldn’t concentrate. It took about seven to eight years of therapy before a psychiatrist said it actually might be ADHD, which made a lot more sense.

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“I was straight away labelled as a naughty problem child and there was no point where a teacher turned around and said there may be something underlying there,” said Jakob.

As well as therapy, Jakob was placed on a low dose of Concerta. Concerta is a common ADHD medication containing methylphenidate similar to Ritalin. It is thought to improve focus in attentive presentations and also decrease risky or hyperactive behaviour.

He continued: “They just kept increasing it in three or four weekly increments. It tends to work fairly well. I can normally get about a year and a half before I feel I need an increase.”

Jakob had been consuming cannabis recreationally before he realised that it could be beneficial for his ADHD. It wasn’t until he received his diagnosis that he realised he had been subconsciously medicating with it.

“I started [using cannabis] before I actually knew I had ADHD, a friend recommended it,” he said.

“It wasn’t until I got diagnosed and talked about it with doctors that we realised I had been unknowingly self-medicating and self-managing. But it does work. I realised I could chill a little bit and I’m less all over the place.”

ADHD studies

The studies of cannabis on ADHD are few but promising. A small Israeli study from 2020 on medical cannabis patients suggested that CBN may help to reduce symptoms. The study involved 59 patients who were asked to record their ADHD, sleep, anxiety patterns using questionnaires. Those on a higher dose of CBN recorded less medication use while those on the lower doses recorded less anxiety. CBN is a controlled substance in the UK as it is created when THC breaks down and becomes oxygenated.

Jakob finds that medical cannabis has pros and cons when it comes to symptom management.

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“In terms of benefits, it’s absolutely taken me down a bit when it comes to energy levels. I am able to think things through after I’ve consumed. I’ll happily be able to sit and properly think out a process rather than just jumping straight in. I’ll take a step back.”

ADHD people can struggle with blurting things out, acting without thinking or failing to recognise risks as they act on impulse. This can have negative effects on their jobs, home lives and relationships. It can be difficult to take a step back to recognise the potential for danger, upset or difficulties.

He added: “I can process and choose an appropriate response. When it comes to being social, it’s much better to be able to navigate situations where I may upset someone by speaking before thinking.”

Diagnosis rise

While ADHD diagnoses are on the rise, there is still a lot of confusion surrounding the condition. This can cause ADHD people to lose jobs, relationships and friendships. A survey from the US ADHD Awareness Coalition showed that more than half of those who participated said they had lost or changed a job because of their ADHD symptoms. A further 36 percent said they had four or more jobs in the past ten years with 6.5 percent saying they had more than 10.

Jakob is honest at work about his ADHD. Although he has just started working in a butchers, the smells, sights and textures don’t bother him. However, he admits that noise is a problem with distraction.

“I started working at a butchers about two months ago and it’s noticeable that I take longer to learn,” he said.

“At the minute, I’m constantly learning new things every day so I explained to everyone at work and said I have a learning difficulty so please be patient with me.

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“They have to show me things a few times and supervise me while I try it myself. It takes all of that while I crack a process. Then there are the sensory processing issues that come with it. There is constantly fans, fridges and machinery going on and it’s a running joke that I can’t hear anything unless people shout.”

Sensory overload can happen when a person has input from their five senses that they can process. Multiple conversations, flashing lights, or a loud party can all produce the symptoms. It is common in ADHD, autism, fibromyalgia and PTSD.

ADHD: A person holding a yellow phone taking a selfie

 

ADHD and cannabis stigma

While Jakob is open at work about his diagnosis, he does get frustrated that people feel it’s about just being a stereotype. He believes that cannabis use and ADHD still carries a stigma.

“I think especially around ADHD, there is a stigma. You tell someone you have the condition and they think it’s about hyperactivity, being energetic and funny. There is a lot more to ADHD than just annoying stereotypes,” he said.

“When it comes to cannabis, I think a lot of opinions have changed over time so I don’t tend to say that I use it a lot of the time but the majority of people know that I do. I think the main reason people don’t like cannabis these days is because of the negative connotations around it.”

Jakob added: “I wish people knew we are all trying our best with the resources and strategies we have at that moment but we have to try that little bit harder, unfortunately.

“It’s not all balancing, happiness and excitement, as it can be really stressful.”

Read more: I’m prescribed cannabis for ADHD but I can’t travel home with it

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Case Studies

CBD brand created by a Welsh athlete releases report on potential health benefits of CBD

The Healthcare Technology Centre (HTC) partners with Welsh brand Hemp Heroes to discover the potential health benefits of CBD products. 

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Fibromyalgia: A cbd oil bottle containing yellow oil has a dropper being placed into it

The Healthcare Technology Centre (HTC) partners with Welsh brand Hemp Heros to discover the potential health benefits of CBD products.

The Welsh HTC led by Swansea University Medical School collaborated with Swansea and Ireland based company, Hemp Heros. Hemp Heros was co-founded by  David Hartigan and martial arts athlete John Philips.

The report was the result of several months of research into the benefits of CBD- based products on a range of conditions. These included epilepsy, side effects of chemotherapy, multiple sclerosis (MS), stress and anxiety.

Speaking with Cannabis Health News, Hemp Heros co-founder David Hartigan explains how an interest in martial arts helped him to meet John and start the company.

Athletes and CBD

David said: “It’s a bit of an interesting story how myself and John met. My background is in business consultancy and I’ve always been into martial arts since I was a kid. John asked my brother who is a musician to do some walkout music for UFC. As John was only newly signed at that time, I wondered if he had anyone to help him with marketing and sponsors. I became John’s manager.”

He added: “I started looking at CBD companies because athletes were starting to use it. I thought there was a huge opportunity to get John sponsored by a company. We did get a few samples from different companies but the quality was hit or miss. Even the instructions when you were trying to read it could be confusing.”

John’s first experience with CBD was not actually on himself but his dog, Alfie. When he became ill, John began treating him with CBD after realising that Tramadol was not working. The vet had exhausted all options for treatment but CBD helped him to recover.

David said: “I have an uncle who is a powerlifter and he has a couple of Irish records. He has a number of injuries he started taking CBD for pain and inflammation. At one stage, he couldn’t even change the gear stick in his car but he has much better mobility and pain management now. So between my story, John’s and the lack of transparency in the industry in the market, we decided to try an investigation.”

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David spent six to eight months researching the whole industry speaking to anyone he could about hemp or CBD. He also joined the board for the Irish Hemp Cooperative. They spent months researching everything before finding a supplier to get them started. The brand has now grown from three or four products to over twenty including a successful pet range.

Hemp heros: A man wearing a black t-shirt stands next to a dog

Welsh university study

The brand partnered with Swansea University and are part of the accelerator programme there. They had planned to participate in studies on CBD but unfortunately, COVID hit just as they began to start the studies. The Welsh Accelerate programme aims to create lasting economic value by helping innovators in Wales to translate their ideas into solutions, enabling them to be adopted in health and care.

David explained: “Dr Daniel Rees, who is one of the researchers at Swansea University reached out to us. He had seen our products around the place and wanted to know if we would be interested to do some studies in the life sciences department.”

“The whole idea of the Accelerator programme is to identify potential services or products that can have a positive impact on people’s lives. It improves the lives of the end-user. Dan highlighted that very little research was done on CBD in this context. We are passionate about transparency so we really wanted to push the research. However just as we had hoped to start lab tests, COVID hit.”

The COVID situation didn’t force a complete shutdown but changed the direction of the study for the researchers. As the colleges were closed, there were no ways of getting anyone into a lab for testing so David and the team decided to go down the road of research producing a report on the effectiveness of CBD. The initial study paves the way for future research activities around four key pillars: pain, sleep, anxiety, and recovery.

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Lab study to research reports

“What we did was change gears so instead of a lab-based study, we are going to do a more research-based one. We researched the case studies for CBD and hemp-based products along with the history behind them. We looked at different cannabinoids like CBD or CBDA, different terpenes and then unique extraction methods. We went into deep dives on what studies were there for cancer, sleep, inflammation, pain and took them as different pillars. This is what our report contains.”

He added: “We wanted to show some form of evidence for how CBD could possibly work for Parkinson’s by looking at the findings, how the studies are performed? What is the wider picture for sleep or inflammation? This could give us a foundation to build on.”

The next step

Hemp Heros started to submit an application called Smart Partnership to the University for the management side. This would allow them to secure funding to get an associate who would work between the Welsh brand and the university.

“It gives the company the tools and techniques to use these findings and apply them so you can continue your work. We have all of this anecdotal evidence on why people use our products but then the smart partnership would allow us to do a deeper dive and validate what our understandings are.”

He explained: “We have set out three pillars essentially. Sleep is one that we want to investigate and they have a sleep lab there. We want to start out with something quite simple like 20 participants with sleep issues and give them a protocol. They log everything then they take a set dose of our product for a week to see what the impact is. The next step would be to go into the sleep lab to actually monitor what someone’s sleep pattern is, how quickly it works and what the effects are.”

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Welsh: A man walking a dog on a lead across a beach

As well as the studies and research they have conducted, the brand is still planning to work with different athletes.

“Should athletes be using prescription pain medications to help with their pain to get through the day? They could have a more natural alternative with no side effects. Your body is already built for cannabinoids, not really for painkillers. That’s why a lot of people have issues with their kidneys when they are on painkillers for so long because they are trying to process everything.”

David is also involved in the advocacy side. He believes that Ireland needs to match the European level to make sure it isn’t left behind. He sits on the Irish Hemp Cooperative Board who are trying to change the laws.

“There are a couple of TDS (Ministers) who said that they would be interested in the sports angle. We aren’t looking for full-blown cannabis legal for everyone but we actually want to just look at hemp and the production because you can get a license but then technically what you grow is illegal. There is a massive gap in the law where the two laws don’t match and we don’t match at the European level. We need to make sure we are on par with our international counterparts.”

Read more: Pain, anxiety and sleep are the most common reasons people use CBD

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Advocacy

Emigration: Access is more than just medical access, it’s also about business

As Ireland continues to enforce prohibition, we meet Aoife McConnell who has moved her yoga business to Spain

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Access: A red Irish passport on top of a blue covid mask with a stop watch on top to highlight emigration

In a new series, Cannabis Health News talks to people who have experienced emigration in search of safe, legal cannabis access.

Read last week’s story here

Previous stories have focused on the difficulty of packing your entire life into boxes and emigrating with your family to a new country for access. But there is more to Irish prohibition than patients and access, it’s the loss of local businesses moving abroad.

In our fourth instalment, we speak to yoga expert, Aoife McConnell about moving her life and yoga business, Puff Puff Pose to Spain.

Aoife left Ireland during the summer of 2021 so has only recently arrived in Granada. She packed her entire life into boxes to get better access to cannabis and also, set up a yoga studio with a difference. She runs the popular, Puff Puff Pose, cannabis yoga studio which encourages practitioners to combine relaxing yoga with cannabis. The studio went online during the pandemic but she hopes to be able to establish a physical space now that she has left Ireland.

Safe, legal access abroad

Like most people in Ireland, her use started as recreational when she shared cannabis with friends. While she acknowledges the recreational side, she says she gets all the benefits of cannabis.

Prohibition in Ireland, and all over the world means that most people when they consume cannabis, often they have no idea what they are actually being given. Unlike legal states in America where someone can select what they need and know the THC or CBD content of a strain. Once Aoife became involved in the community, she realised how prohibition also stifles education about the plant.

Her use is mainly recreational however, while in Ireland she was forced to run her cannabis yoga business online or outdoors as it was illegal.

“In the last two or three years, I’ve become a lot more involved in the community of cannabis. Before then, I had no idea that were even strains of cannabis like Indica or Sativa. You were given what you were given. There is no source of understanding because there is no education around the whole thing. It could have been anything in a bag as we wouldn’t know the difference.”

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She added: “When you realise they actually have completely different profiles or effects then that matters for someone who needs the plant for medicinal purposes. It matters how it’s grown, taken care of or what the product actually is. I think it was just teenage ignorance but I didn’t even think of the fact there was so much to it. You just take what you are given and like it.”

Access: A woman with dark hair laughs against a dark background

Finding a space

Prohibition meant her classes were unable to find a space despite their emphasis on wellness and relaxation. Aoife began to consider the longevity of her business especially as COVID rules relaxing meant people were starting to look for offline classes again. She realised it was time to leave Ireland.

“I’ve been doing my classes mostly online or outdoors because it’s unregulated or illegal. It’s hard to get into a space to facilitate those classes. I wondered where I could go in Europe that could facilitate those classes. The Netherlands are starting to pull back their laws a bit and get more strict, especially after COVID so you never know how they are going to react. Spain is moving in the opposite direction.”

The global cannabis industry is expected to reach $90.4 by 2026 thanks to the growing acceptance of cannabis consumption along with the medical side. This is everything from edibles to dispensaries to products. Ireland currently allows CBD and medical cannabis but the recreational side is still illegal. The current systems in place for medical cannabis are not functional with the MCAP program yet to even start despite being introduced in 2019.

It has been highlighted that the tax and profits raised by a legal recreational system could contribute to some of the financial problems experienced by the country. Legal systems in countries such as Atlanta Georgia, California and Massachusetts have proven to be successful. Sales in Massachusetts recently topped $2 billion which is almost double what the state reported in November 2020. Cannabis was legalised for adult use in late 2018.

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Access to the Spanish model

While Spain has legalised the growth of up to two plants in your own home, there are still issues with the system. There have been reports of cannabis clubs, where it is legal to consume cannabis, being potentially closed. But for the meantime, a patient must sign to say they are addicted to cannabis and a resident before being allowed entry to one of the clubs.

“There are a lot of regulations around the clubs. You have to sign an affidavit to say you are addicted to cannabis and seeking out the club to facilitate your addiction. You have to say the club is not enticing you or advertising in any way. Most of them look like a door and you wouldn’t even know apart from the smell.”

Once you are inside, there is a loophole that allows this club to operate as cannabis is a ‘hobby.’ The illegal part is the buying and selling of the cannabis. I’m not sure where the government thinks they are getting this cannabis from. So I started to think that Spain was where I wanted to be.”

Access - a cbd topical on a wooden surface with other herbs around in glass jars

Deciding where to go in Spain was easy. Aoife had a friend based in Granada in the south so she chose to go there. She visited during the summer and fell in love with the architecture, history and feel of the city. She felt it was the perfect place to move the business. Aoife also teaches English online so her day job was perfectly suited to moving abroad.

“I quit my job and went on a tour of Europe. I’m still settling in here and learning the siesta way of life. But so far so good. There are a lot of experts here and everyone understands where I am coming from so they are very helpful.

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Aoife highlights how the leap into the unknown is often the hardest part of emigration. She feels she has never been this self-sufficient. Her day starts with tutoring online to pay bills but she will be opening the yoga business soon. In an unusual move, Aoife’s previous experience was as an airline hostess.

“It’s exciting to be stepping out and owning my own business. I’m still terrified about it but also really excited. I used to work for an international airline, Emirates when I lived in Dubai. I travelled everywhere. I was always looking for a studio or thinking about building my own.”

“I struggled to make friends in yoga class especially when moving to a new city. In my classes, at the beginning, we always consume together then chat. I’ll always bring orange juice, kombucha and biscuits. We sit around for as long as people want. It’s a real community-building atmosphere.”

Time to leave

Aoife is proud to be Irish but explains the problems with the country mean she is not thinking about staying.

“I love the fact I’m Irish and that part of my personality. I would love for my kids to have that much Irish in them. I couldn’t afford to live there as we are being priced out of the country. I couldn’t afford the type of lifestyle I would like to have. It’s ridiculous. The fact that we didn’t have a green passport for so long. We’re the only country in the EU who weren’t ready when that was rolled out speaks volumes.”

Read our previous stories on emigration here: “I would tell people if they are thinking about it, to go as you’ll get better access.”

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