A disabled woman who lives with severe chronic pain has launched a fundraiser in a desperate attempt to access medical cannabis.
Some days the pain is so bad that Heather can’t get out of bed.
She will lie there screaming and crying because it hurts too much to move.
“It’s like you’ve been run over by a truck, but the truck never stops rolling, it’s just constantly running over you, and then someone is beating you with a sledgehammer at the same time,” says the 40-year-old.
“It’s just horrific. You can’t get comfortable because of the pain, but it hurts too much to move. Think of the worst thing you can imagine times a million, and then maybe that’s something close to what it’s like.
She adds: “It’s like that every second of every day, it never stops.”
When her pain is not at a nine or 10 on the pain scale, Heather can just about manage to get out of bed and wash or shower, before moving downstairs to sit in her chair, where she’ll spend the majority of the rest of the day.
“I don’t get up at until 11am because I have also have chronic fatigue, and the opioids make that worse,” she explains.
“Then I’ll hobble to my chair and sit on my laptop clicking links on YouTube because it hurts to type. I’ll take naps, I might go back to bed if the pain is too bad.
“Around dinner time I’ll start watching movies and then at 9.30pm I’ll go to bed and lay there for the rest of the night.”
Heather began experiencing unexplained pain around a decade ago. Despite numerous trips to the doctor they never investigated beyond sending her to physiotherapy, which she says made things worse.
“Years passed and it got worse but the doctors still didn’t know what’s going on,” she says.
“They would say ‘oh you just need to do some stretches’- no one sent me for tests or an MRI to investigate.”
The about four years ago her condition deteriorated rapidly.
“I became bed bound. I’d be screaming at night and crying because I couldn’t sleep, it was unbearable,” says Heather.
“I spent around a year trying to find a doctor who would listen and eventually I was sent to a pain clinic.”
Unable to work, Heather had to give up her admin role and couldn’t walk or stand for more than a couple of minutes.
She was gradually prescribed stronger and stronger opioids until she became reliant on Fentanyl patches.
“It did get me out of bed and knocked my pain down to about a seven, which was brilliant, but I get withdrawal symptoms between patches, such as chills and sweating,” she says.
“It’s now been two years and my pain is back up to a nine. I have to put the patches on every 48 hours instead of 72. I know it’s only a matter of time before my pain is at 10 again, every day I’m a little bit closer.”
In light of the new National Institute for Health and Care Excellence (NICE) guidelines published earlier this year, Heather now worries that even this limited option will be taken away from her.
The regulatory body has advised doctors against prescribing common painkillers such as opioids and paracetamol for chronic primary pain conditions, in favour of exercise and alternative treatments such as acupuncture.
“The doctors have told me there is nothing else for me and now they want me off opioids too,” says Heather.
“I worry about it every day. Now at least I’m still getting some pain relief, but if they were to take that away and leave me with nothing, that sounds like hell.
“Fentanyl was a lifesaver, before I had that I wanted to die, it was just unbearable, having that level of pain every second of the day. I can’t live like that.”
But Heather does have another option, in cannabis medicines.
A recent study by Drug Science found medical cannabis was safer and had more benefits than 12 of the most commonly prescribed painkillers, in patients with chronic neuropathic pain (CNP).
Authors concluded that medical cannabis contributes more to patients’ quality of life and is more favourable in terms of side-effects such as cognitive impairment, dizziness, constipation, affect disorders, overdose toxicity, respiratory depression, withdrawal, and dependency.
Before she became too ill to work, Heather would travel abroad and take holidays in countries where cannabis was legal, such as Amsterdam and the US.
“I’d save up money and take holidays just to get pain relief,” she admits.
“It was like going away and winning the lottery, I was never pain free but it knocked my pain down to a six and helped with the stiffness for my sciatica and migraines as well.”
But back in the UK she came up against a brick wall.
“When I first told my doctor that cannabis worked he started laughing and said I should move to the US,” says Heather.
“There’s been many times when I’ve had doctors laugh in my face when I’ve told them cannabis helps. They say there is nothing they can do, some of them don’t even know it’s legal.”
Heather says she has tried contacting her MP for help and has even been in touch with NICE directly, but is constantly told there is “nothing they can do”.
She started her blog, Chronic Heather to document her journey and to raise awareness of the struggles facing her and other patients trying to access cannabis medicines on the NHS.
“I’m sure a lot of people won’t even believe what I’m writing, because it’s so crazy to think that this is how people are being treated in England in 2021,” she says.
“The NHS is great if you break your leg or have something it can treat, but I don’t think the care is there for people with chronic conditions.”
Many chronic pain patients are now accessing legal prescriptions for cannabis medicines via private clinics, with the help of schemes such as Project Twenty21.
Preliminary results from the study, which aims to create Europe’s largest body of evidence for the safety and efficacy of medical cannabis found the treatment improves quality of life by more than 90 percent – with the vast majority of patients (56 percent) reporting chronic pain as their primary condition.
But with Heather’s only income the £300 a month she receives through disability benefits, even this option is out of reach for her.
“I’m not eligible for Employment and Support Allowance due to not having paid enough national insurance as I was only working part time before being unable to work at all.
“I don’t even have the money to access cannabis illicitly. I have considered growing but this costs money too and I don’t know if I could physically do it.
“I would be tempted if my pain gets worse, but I don’t want to break the law, why should I risk getting arrested? I shouldn’t have to, it’s legal.”
Instead, Heather has launched a fundraising campaign to try to raise at least £2,260 to fund private prescriptions and consultations for a year.
Speaking to a UK clinic at a free eligibility interview, doctors have already suggested Heather try a mix of two products which would be £300 a month, but she says this is “too much to ask for”.
“Asking for the two products which were recommended to me would be £4,060 a year, so I’m only aiming for the minimal 1g a day, which would still help although nowhere near as much,” she explains.
“If I could have a year with my pain reduced every single day and not having to worry about the money it would be absolutely amazing, it would be a dream.”
Heather adds: “I need the hope of having some pain-less days, so I can have more of a life.”
Donate to Heather’s fundraising page here
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.
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 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.
“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.”
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.
“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.”
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.
“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 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.”
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.
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.”
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.
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.
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.”
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.”
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
In a new series, Cannabis Health News talks to people who have experienced emigration in search of safe, legal cannabis access.
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.”
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.”
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.
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.”
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.
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.”
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