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Case Studies

“We don’t get a day off from our conditions – we need change now”

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On Medical Cannabis Awareness Week, PLEA advocacy lead, Lucy Stafford told Sarah Sinclair about how medical cannabis saved her life – and why she won’t stop until everyone has access.

Lucy Stafford has a tiny sunshine tattooed on her wrist.

She shows it to me over Zoom when I ask her how it felt to discover cannabis after years of living with a debilitating health condition.

“I can’t explain what it’s like to spend all of your teenage years unable to think clearly, unable to engage in a conversation, losing your memory for weeks at a time and then suddenly having it all returned to me – I was like a new person,” says Lucy, now 20.

Having battled with the symptoms of Ehlers Danlos Syndromes (EDS) – a condition which affects various parts of the body and for which there is no cure  – most of her life, Lucy wasn’t diagnosed until at the age of 16.

By then she had already been taking opioid-based medication daily for three years, having first been prescribed them at the age of 12 to help manage her pain.

“I was in so much pain, in all of my body,” she says.

“I had all these different things going on all the time – I needed surgery on my hip, my spine, my jaw, my stomach, my bladder – no one could join the dots.”

By 17 she was on fentanyl, a drug 50 times stronger than heroin.

“At the time I didn’t know how strong these medications were, I was young and in huge amounts of pain, crying myself to sleep most nights,” she remembers.

“The side effects of these medications are really scary, they affect your breathing and how your body works and I would get withdrawal symptoms if I missed a dose.”

She had to drop out of school, needed the use of mobility aids and a feeding tube and throughout her teenage years, existed in what she describes as a ‘haze’ of symptoms from the medication.

“I’m lucky that I had a few friends who were really supportive and would come and visit me in hospital – they were my lifeline – but I couldn’t go into town with my friends, I couldn’t go to school.

“For quite a few years my doctors were my only social contact out into the world. My quality of life was non-existent.”

Lucy continues: “My doctors told me that realistically I would be lucky to get through my 20s with the medications I was needing, but honestly, I barely thought about the future, I was so dulled out. I was just trying to stay alive, minute by minute, hour by hour, day by day.

“That’s how I envisioned the rest of my life, until medical cannabis took me on a different journey and literally, saved me.”

It was actually Lucy’s doctor who first suggested cannabis and tried to write her a prescription in 2018, around the time that the law was changing. But it was denied by the multidisciplinary team on the grounds of a ‘lack of evidence’.

With no way of legally accessing it in the UK, Lucy and her mum took a train to Amsterdam where she tried cannabis for the first time. She saw a difference almost instantly.

“I’d had this weird fever for around a year and it just went,” she says.

“We had a bit of a joke about it being because we were away, but it didn’t come back, and that night I slept well and I wasn’t waking up in the morning being sick.”

When she returned to the UK, like many patients, Lucy was forced to resort to accessing her medication illicitly. But despite the risks she had to take, she now says she has no regrets – if she hadn’t she would never have known how life-changing medical cannabis would be for her.

“That risk saved my life, but it’s upsetting that back then I couldn’t have got my medication through a legitimate route,” she says.

“I would never have thought that I’d be in a position where I had to break the law to just be well.

“You don’t think you’re going to end up in a McDonald’s car park doing a drug deal when you’re really sick. No vulnerable person should ever be in that position, but that we have no other option.”

Lucy is now enrolled in Project Twenty21, the pioneering study which is subsidising the cost of prescriptions for medical cannabis patients, in a bid to create the largest body of evidence in Europe for the efficacy of cannabis-based medicines.

Since having a consistent, regular prescription for her medication Lucy says her life has been transformed.

“When you’re using this to be able to function throughout the day, you need a consistent supply of medication, you need somebody to advise you on what you should be taking and how much – and unfortunately most patients still do not have access to that,” she says.

“When I was medicating illicitly sometimes it would work, sometimes it wouldn’t and that’s just not what you need.

“I have bad days still, but knowing I can take my medicine and it will help has made such a big difference.”

Lucy is now able to walk up to 5km a day and does yoga to help her symptoms.

“I have energy all day every day, it’s amazing. Now exercise is something that makes me feel better,” she says.

“I always thought I was lazy but I was actually just exhausted from the side effects of the ridiculous medication that I was on.

“I’m just trying to work out where I fit in the world now.”

She is studying for a science degree and hopes to work in neuroscience research, but not before she has secured equal access for patients through her advocacy work with PLEA (Patient-Led Engagement for Access).

Lucy is advocacy lead for the organisation, which was formed earlier this year to focus on getting cannabis based medicinal products prescribed on the NHS and to reduce the inequalities that currently exist for patients.

It is a role which is important to her above all else.

“As soon as you enter an organisation like PLEA you meet so many patients and see the magnitude of the issue. It’s something that can’t be ignored anymore,” she says.

PLEA also provides a community for patients and support to those who are already going through the process of accessing a prescription, which can be ‘overwhelming’.

“It can be quite an isolating experience and having a community of people that have been through it to support another is invaluable,” says Lucy.

“That lived experience is something that needs to be valued and learned from and that’s what PLEA is all about, ensuring the patient voice is always there.”

The launch of PLEA’s first Medical Cannabis Awareness Week (from 1-8 November) – which Lucy has spearheaded – is a full-throttle attempt at improving public understanding and ultimately, destigmatising medical cannabis.

Despite people around her being supportive, Lucy still has to deal with the stigma of her medication in her day to day life.

“Undoubtedly you get the eye rolls and people assume that it’s ‘just a bit of weed’ to chill you out,” she says.

“People don’t give it the respect that other medications have or won’t engage with the conversation because it makes them uncomfortable.

“The week is about making medical cannabis something that we can’t ignore anymore – we need access to this for everybody, just as the NHS was set up to be.

“There is so much suffering for patients living day in, day out with these illnesses,” she adds.

“We don’t get a day off from our conditions, we need change now.”

For more information visit www.pleacommunity.org.uk/mcaw

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Case Studies

“Cannabis is what helps me cope”

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Susanne was diagnosed with Autism and ADHD a year and a half ago

Cannabis Health speaks to cannabis and CBD entrepreneur, Susanne Buckley, about her thirty-year relationship with the plant and why she is now giving small doses of CBD to her non-verbal autistic son.

 

Susanne Buckley, a mother-of-three from Cheshire, has used cannabis since the age of 20.

Due to a number of traumas in her life, including the tragic passing of her partner, the 50-year-old says she has depended “heavily” on both alcohol and cannabis at points in her life.

She was able to stop drinking several years ago and hasn’t touched alcohol since. She did, however, continue to consume cannabis. She didn’t know why, she says, but it was “working” for her.

Eighteen months ago, Susanne was diagnosed with autism and ADHD and it suddenly made sense to her why she was benefiting from cannabis.

Although scientists are still in the early stages of research, anecdotal evidence and early studies suggest that cannabinoids such as CBD could help alleviate symptoms related to autism spectrum disorder (ASD).

Research into cannabis and ADHD is equally patchy, however, many people with the condition report that cannabis helps manage symptoms such as agitation, irritability and lack of restraint.

A research paper from 2016, for example, analysed just under three hundred online forum threads. I found that 25 per cent of posts were from people reporting the therapeutic effects of cannabis. Only 8 percent of posts reported negative effects.

“I self-medicate,” Susanne says over Zoom.

“I don’t drink, I don’t smoke [cigarettes], I have an addictive personality, I am autistic and cannabis is what has helped me cope.”

She continues: “Cannabis lifts my mood instantly. I self-sabotage and that’s all part of autism. I look in the mirror and I would hate myself because of the traumas that I’ve been through. But after taking cannabis I can focus, it just changes how I think from negative to the other way.”

Having researched the potential benefits of CBD for ADHD and autism, Susanne wondered if it could help her son, Lucas.

Lucas, who is 10-years-old, lives with non-verbal autism. It is clear from talking to Susanne how much she loves her son, however as a single mum caring for a child with such a severe form of the condition, it has taken a toll on her wellbeing.

“I can’t speak to anyone when he’s around. I can’t have relationships with people, I’ve lost a lot of my social life because he consumes all of my time,” she says.

“He terrorises the house, he destroys everything to the point where I’m in tears, but he’s my son.”

During the Covid-19 crisis, Susanne describes being traumatised as the lack of respite from her care duties caused her mental health to plummet.

“My mental health has declined a lot because I’m in a very difficult situation, she says.

“A lot of people don’t have to cope with what I’ve had to deal with during Covid.”

Lucas has been prescribed ADHD medication on several occasions, but Susanne describes these periods as being “dreadful” for her son.

“They suppressed his appetite so much that I actually saw him wasting away in front of my eyes,” she says.

“I got to the point where I just couldn’t deal with it.

“It wasn’t doing him any good. I thought, ‘why am I giving him these tablets?’ I had to make the decision to stop it.”

She made the decision to bring Lucas off of his ADHD medication two months ago.

Having experienced for herself the benefits of cannabis for addressing mental health issues, autism and ADHD, Susanne decided to try Lucas on CBD.

He now takes just one drop of CBD oil a day in the form of a patch which he wears in bed.

Susanne says she saw a change in Lucas instantly after he started taking CBD.

“I had to look for alternatives to help us as a family, nobody else can,” she continues.

“I noticed a huge difference in his behaviour. I see it visually, he’s more relaxed and calm.

“With the patches, I have noticed that he wakes up in the morning and sits in bed for a while. Normally he would be out banging the doors, but now he’s lying in his bed happy.”

Things also changed for Lucas at school. Regular reports from his teachers show periods of time where he was disengaged and eating very little or nothing at all. This coincided with the periods that he was taking ADHD medications.

After he started taking CBD, his behaviour at school dramatically improved. She recalls receiving a recent report praising her son for being “lively as ever, engaged and eating us through the house.”

In her professional life, Susanne built a successful career in social care, working with children with attachment disorder, special needs and autism.

However, due to the lack of support from social services, Susanne was forced to leave her job five years ago to care for her son.

“I couldn’t put Lucas into [care] during the holidays, so I ended up having to come out of work and as a result, I struggled financially,” she adds.

Living on a carer’s allowance of £67 pounds per week, Susanne was unable to afford her car and struggled to keep up with mortgage payments.

“It was a nightmare,” she says.

“I was a lone carer trying to pay a mortgage.”

She also had to face the stigma of being a cannabis user on a day-to-day basis. On one occasion a neighbour reported Susanne to social services, leading to police and social workers “invading” her home and personal life.

“People are allowed to take antidepressants and that’s okay, but if somebody wants to take cannabis, that’s wrong.

Susanne and Lucas, 10.

“I was put in a position where I was discriminated against for using cannabis. It led me to think, ‘why am I being pushed into a corner like this? I’m doing nothing wrong here’,” she says.

In an effort to find other people like her, Susanne turned to social media where she posted about her experiences as a mum of a neurodiverse child and her passion for cannabis and its medicinal benefits.

She continues: “I just couldn’t find other people like me. People would look at me and judge me and think I’m a stoner.

“But I held down a job for 37/40 hours a week, I brought up three children on my own, I have my own home.

“Why are people judging me? Because I choose to smoke a plant?”

Having built a dedicated following on social media over the past three years, Susanne is now setting up an online platform to promote the medical benefits of cannabis.

The website, called Susie’sHemp, will publish interviews with cannabis advocates and promote both her own and other cannabis brands.

Lucas will also be the subject of a blog about autism, neurodiversity and the potential benefits of CBD for autism.

“I want it to be a diversity of interests for lots of different people, pulling together those that I’ve worked with for the last three years and have helped me.

“A lot of people don’t know about the different cannabinoids and the endocannabinoid system. I have to advocate for it and the website will be a platform for educating people,” she adds.

“It’s about getting the message out there to society and ultimately, the nub of it is education.”

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Case Studies

“My generation should try CBD – what do we have to lose?”

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Annemarie says people of her generation should just try CBD

Annemarie Bousa, 81, on CBD for sleep and anxiety – and why others of her generation should give it a try.

Three years ago, Annemarie Bousa began suffering from an extreme nerve pain extending from her hip down into her leg.

Living in Germany at the time, the 81-year-old grandmother went through three operations to free up the nerve and reduce the pain, however none of these worked and she continued to live with the debilitating condition.

Labelled a “pain management patient” by her doctor, she was prescribed Fentanyl patches, a strong pain-relieving opioid which is infamous for being more potent than heroine and equally as addictive.

“I felt elated as the Fentanyl patch immediately dealt with the pain, so I went along with it all,” Annemarie told Cannabis Health.

“But now I’ve become reliant on it.

“Every three days I need to get the patch replaced. On the first day I always feel a bit light-headed, on the second day I feel normal and on the third day I start feeling a bit fragile, nervous and anxious.

“It’s always a bit of a rollercoaster, but it is better than the intense pain.”

Three years later, Annemarie was still being prescribed Fentanyl patches and continued to experience anxiety which was starting to affect her sleep.

She tried sleeping pills that were available from the pharmacy, but they had little effect.

“I didn’t sleep for three nights in a row,” Annemarie recalled.

“I was really worried and tired. I felt this pressure to sleep well the next night and it became a cycle of anxiety and extreme tiredness.”

At this point, Annemarie had moved to Portugal to live with her son, Ingo, and his young family. Since she had moved in, Ingo had started to notice that his mum’s sleep and anxiety were getting progressively worse.

As as one of the founding team behind the CBD company, Ardoa Organics, Ingo wondered whether the company’s broad-spectrum oils could help his mum, but was unsure about combining the cannabis-based supplement with her fentanyl medication.

Ingo is a founding member of Ardoa Organics

“I did some research on how the Ardoa broad-spectrum night-time oil could help my mum to get better sleep and get her anxiety and stress levels down,” Ingo said.

“I was obviously sceptical because of the Fentanyl, so I did some research and found clinical trials where CBD and Fentanyl was given to patients to combat heroin cravings.”

Ingo was referring to a 2019 study which looked at CBD’s potential for reducing opioid cravings. It found that combining the two substances did not cause any serious adverse effects.

Two other studies, both published in 2015, also revealed that CBD had minimal adverse side effects when used with fentanyl.

With these initial studies giving Ingo the peace of mind he needed, he introduced his Mum to CBD, starting on one drop per night and increasing the does until settling on five drops.

“She had a full night’s sleep for the first time in days and woke up rested,” he said.

“Then, after a couple of days, her mood really changed for the better.”

CBD has been shown to help manage various health conditions commonly associated with old age, however many elderly people may be reluctant to try the supplement due to its association with cannabis.

Annemarie thinks people of her generation should “just try it”.

“People shouldn’t be afraid of it, especially people my age,” Annemarie said.

“What do we have to lose?

“We can only make ourselves feel better. For me, I take a little spoonful of medicine, which is 100 percent natural and legal, whenever I feel anxious and want a good night sleep. That’s it.”

Since Annmarie started taking CBD oil, other members of her family have also started taking the supplement for reasons such as managing arthritis and recovering from fitness training

“Taking a couple of drops of natural oil to help me sleep and feel much less stressed seems normal now,” she added.

“Maybe my story helps others who are sceptical to overcome their prejudice – that would be nice.”

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Case Studies

“I experienced peace I’d never felt before”: The African encounter which inspired a CBD empire

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Paul Shrive, co-founder of Leafline CBD

Suffering with a severe fever while in Kenya as a teenager, Paul Shrive was given a cannabis-based brew by a local. He not only recovered from the illness, but experienced mental clarity for the first time in his life, he tells Cannabis Health.

Paul Shrive, founder of Leafline CBD, had a challenging childhood. He would frequently get in trouble with his schoolteachers and was bullied by his classmates for being “different than everybody else”.

“It was a very, very difficult and traumatic time for me at school,” Paul recalls, speaking to Cannabis Health.

“Teachers used to look at me as a problem child, because when somebody was screaming at me, I just couldn’t take it; it was like I was being attacked.”

Although he has never been formally diagnosed, Paul has been told unofficially that he is on the autism spectrum, which has meant he experiences his senses differently to most people.

“Everything just goes a zillion miles per hour,” he explains.

“Something wasn’t right, but I spent my life thinking it was just me, that it was just who I was. But there was actually something out there that could make it better, I just didn’t realise it at the time.”

In 1986, when Paul was fourteen years old, his father was offered an opportunity to come out of retirement and travel to Africa to carry out work on a food manufacturing plant that he had helped set up a decade previously.

Paul was given the choice of either going to Africa or staying in school in the UK. Given the difficulties he was experiencing with his teachers and fellow pupils, Paul jumped at the opportunity and boarded the plane to Nairobi with his Dad.

Over the next nine months, Paul came to discover cannabis, which he says was part of everyday life in Kenya despite its illegality.

Paul remembered walking around the outskirts of Nairobi and seeing small children picking a mysterious plant.

“I started noticing these little kids in fields picking plants and filling up these clear bags,” Paul says.

“I wondered what they were doing.

“I got back into Nairobi centre and around the markets I saw the same boys, around eight or ten years old. My Dad told me they were shoeshine boys.

“I noticed that they had dozens of these bags around the waist – I know now that they were bags of cannabis; pure hemp growing everywhere in the fields.

“Businessmen would have their shoes polished and buy these bags and take them to their wives, because they use them for cooking, they use it as herbal remedies – it’s part of their everyday life.”

Not long after arriving in Africa, Paul became ill, catching a serious bug causing an intense fever that continued to rise despite being seen by a number of doctors. He was hooked up to a drip in his hotel room while doctors attempted to cure him through various treatments.

A British chef working at the hotel heard about Paul’s situation and approached his Dad. He believed, as the boy was suffering from an African illness, it would require African medicine to treat.

“I was delirious,” Paul says. “I was all over the place. I really wasn’t well.”

“They had a chat with one of the major tribes in the area and asked if they could help me.

“I don’t know exactly what happened, but I know that I was visited by a ‘witch doctor’ or ‘shaman’ of some kind.

“The next thing that I remember is my father waking me up. He had a clay vial in his hand containing a black and gloopy kind of liquid. It had had alcohol and pure hemp in there.

“I was out for the count completely for more than a day, but while I was knocked out, my temperature started to drop, and drop, and it allowed me to heal.”

Many people, including his father, believed his recovery was purely coincidental, but Paul says it didn’t matter whether it was or wasn’t. What struck him when he regained consciousness was how clear his head was.

“When I came around, for the first time ever, I experienced peace that I’d never felt before,” he says.

“I felt normal. There was nothing that agitated me, I could sit there without fidgeting, I could sit there without having to worry, or feel as though I had to put my hands over my ears.

“When you’ve had a whole life of what you feel is torture, it was a revelation to find that kind of peace and tranquillity.”

For the remainder of his time in Nairobi, Paul was provided with a less potent form of the concoction without the addition of alcohol. He consumed a small amount twice a day. As it contained THC, Paul remembers feeling a rush from the medicine, but it was manageable.

“I could think and I could hold a full conversation. I could look at people in the eye and totally hear what they were saying,” he adds.

On his return to the UK, Paul says he had a “short, sharp shock” when he discovered that the plant was illegal. As a young teenager, he was unaware that people were using cannabis for recreational purposes. With no access to the plant, Paul says he suffered for a number of years.

When CBD began to see an increase in popularity several years ago, Paul was quick to launch his own business, Leafline CBD with his wife Sonia, who has her own journey with the supplement. Suffering with PMDD (post-menstrual dysphoric disorder), a severe form of PMS, Sonia’s doctor prescribed her a low dose of anti-depressants.

Paul suggested to his wife that she try CBD to manage the symptoms instead, so she started taking an oil every morning and night and over time, her symptoms subsided.

“The last thing I wanted, was a pharmaceutical drug to treat it,” says Sonia.

“PMDD isn’t a mental problem, it is a hormonal problem.

“For PMDD sufferers, it last for between 6 days and 3 weeks every month which is no fun at all. I still have symptoms, don’t get me wrong, but they are for a smaller amount of time and symptoms are not as intense since taking CBD.  ”

Like the rest of the UK’s CBD sector, Leafline are preparing for the Food Standard Agency’s Novel Food Applications which close on the 31st March.

But as a firm believer in the power of whole-plant extract since his experiences in Nairobi, Paul is fearful that full-spectrum products will no longer be permitted following the deadline.

“Isolate-based [CBD] does have a purpose, it does have a mode of action, but the true goal is whole-plant and I’m really scared because I think it’s going to be taken away from us,” he says.

“Unfortunately, by doing that, it that will create a black market. I’ve had somebody that has been on whole-plant for a long time and then when we gave them an isolate tincture, it didn’t work.”

Paul adds: “You can’t mess with nature. Leave nature alone and nature will do its job.”

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