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Why we’re taking NICE to court over cannabis denial

The parents of Charlie Hughes have seen cannabis medicine transform their two-year-old’s life. They are now gearing up for a legal battle to help them and other families access the treatment on the NHS.

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Matt Hughes sees Britain’s medical cannabis blockade as the start of a race.

In this race, however, the clinicians and hospital bosses assembled behind the line are not poised to come flying out of the blocks.

Instead they are looking anxiously at their peers waiting to see who will cross the line first that they can chase into the unknown.

Matt and his wife have the biggest possible stake in how this plays out.

Their two-year-old son Charlie has a rare epileptic condition called West syndrome. His life has been transformed by medical cannabis, but the family has been unable to secure it on the NHS, hence a forthcoming court battle and the ongoing financial burden of an expensive private prescription.

Matt says: “As soon as one hospital trust or clinician prescribes, we’re hearing that the flood gates could open. At the moment it’s a question of who’s got the balls to step over the line and make the first prescription?

“They’re all looking at one another, looking for other NHS clinicians that have prescribed.”

Before they discovered cannabis medicine last May, Charlie was having up to 120 seizures a day and was on a regime of four anti-epileptic drugs at any one time.

Now taking cannabis medicine, his seizures are down to 10 to 20-per day and his development is gathering pace. The family followed the ‘start low, go slow’ approach to cannabis medicine, gradually finding the right product and quantity to best manage his condition – and he is in a much better situation now than when he took various anti-epileptic drugs.

“Beforehand, he was either sleeping or, when he was awake, he was just seizing. He wasn’t interacting and you couldn’t really play with him. There was no giggling or little baby noises. It was almost as if we didn’t really know our child, if that makes sense.

READ MORE  Study shows cannabis has few long-term cognitive effects on teens

“Now, he’s like a different kid. All of a sudden he’s laughing, giggling, interacting and developing. He has speech therapy, physio and is at nursery and the specialists he sees are all saying his development is moving on.”

​This change, while priceless to the family, comes at a hefty financial cost of around £1200 per month. Having been denied access to his treatment on the NHS, the family is taking NICE and  Cambridge University Trust to court in what could be a landmark case.

“This isn’t just about Charlie, it’s about all children with these conditions being able to access medical cannabis. If they did give us a prescription, we hope it would encourage other people to stand up to the trusts and also it could help trusts to feel more confident in prescribing.”

On 1st November 2018  the government moved “cannabis based medicinal products” from Schedule 1 to Schedule 2 of the Misuse of Drugs Regulations 2001.

This enabled doctors on the specialist register to prescribe cannabis. The regulation change allowed for prescriptions for any condition and of any product meeting good quality production standards (EU Good Manufacturing Practice).

Unfortunately, since that point there has been no prescription of a full extract cannabis product on the NHS.

There are a number of speculated reasons for this. Partly there is a perceived lack of support and training around cannabis medicine for doctors, with the endocannabinoid system and cannabis plant rarely taught in medical school.

Also, although not relevant to epilepsy patients specifically, guidelines produced by influential bodies the Royal College of Physicians and NICE are largely negative about cannabis as a pain relief treatment.

Furthermore, an NHS doctor willing to prescribe cannabis needs to gain approval from their trust. But no trust has taken the bold step of agreeing to prescribe.

READ MORE  Researchers urge healthcare providers to routinely ask patients about cannabis use

There is also the added complication that, save for the products Epidyolex and Sativex, cannabis medicine is an unlicensed treatment which means that the prescribing doctor takes more responsibility and liability than usual.

Matt says: “When the law changed, two children that had special licences received prescriptions. But Charlie’s would be the first NHS prescription since the law changed so in that regard it would be a landmark case.”

Cambridge University Hospital NHS Foundation Trust, which guides other local trusts on epilepsy issues, says that guidelines from NICE prevent it from prescribing medical cannabis. But NICE claims it does not prevent doctors making prescriptions where clinically appropriate.

“So our argument is asking whether this is a clinical decision or is it just a ‘no’. Personally, I think the trust appears to be giving us a blanket ‘no’ rather than looking at the individual case. Despite what the law says about clinical decisions, there is no clinical decision being made.

“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.

“Also, 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?

“At the same time, no-one in the NHS is saying this drug is dangerous. At no point, since Charlie’s been on it, has anyone said it’s dangerous and he shouldn’t be on it.”

The family is taking considerable risk in pursuing legal action.

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While they have received some legal aid, they would be liable for the legal costs of NICE and the trust, which Matt estimates could be upwards of £20,000.

Over £11lk has been donated to the family via the legal fundraising platform Crowd Justice to help them in the battle ahead.

Lawyer Nusrat Zar, of Herbert Smith Freehills, stated in the Mirror newspaper that the aim of the case is to “ask the court to rule that the refusal to offer the drug is unlawful”.

She explained: “Legally, a decision doesn’t oblige the hospital to give the drug. But public bodies like the NHS are good in taking on board such decisions.”

At the time of writing no court date has been set, with COVID-19 continuing to cause havoc to all such processes.

In the meantime, Matt and his wife are supporting other parents in navigating their own access to medical cannabis.

“We understand the processes and laws now and pass everything on to other families about what we’ve learned in fighting to get the medicine.”

Donate to the Hughes family and read their full story here.

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

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Case Studies

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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Welsh: 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.”

READ MORE  Study shows cannabis has few long-term cognitive effects on teens

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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Cannabis Health is a journalist-led news site. Any views expressed by interviewees or commentators do not reflect our own. All content on this site is intended for educational purposes, please seek professional medical advice if you are concerned about any of the issues raised.

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