The Department of Health has reached an agreement with Dutch officials to extend the supply of medical cannabis oils to existing patients in the UK until 2022.
Medical cannabis patients, living with severe, life-threatening epilepsy were left without access to medication when the UK left the EU at the end of last year.
Families, whose children are prescribed Bedrocan oils in the UK but must obtain their prescription through the Transvaal pharmacy in the Netherlands, were given two weeks notice that their medication could no longer be dispensed following the end of the Brexit transition period on 31, December 2020.
After outrage from campaigners, the Dutch government agreed to continue supplying the life-saving products until 1 July, 2021 while a more permanent solution was reached.
This waiver period has now been extended until 1 January, 2022.
Health ministers promised to work with officials in the Netherlands to find a “long-term” solution, but according to those at the forefront of the campaign, there is still “some way to go”.
Hannah Deacon’s son Alfie Dingley, who is prescribed Bedrocan products for a rare form of epilepsy, recently celebrated one year seizure-free.
In a letter to Deacon on Thursday 13 May, the DofH said it was working with the Dutch government, Bedrocan and the Transvaal pharmacy to proceed as “quickly as possible” with the UK production of these medicines.
It added that domestic production is “complex” and that manufacturing “unlicensed herbal medicines” comes with “significant challenges”.
Deacon said that the UK production of Bedrocan products was the “only solution”.
While other cannabis-based medicines are available in the UK, experts have warned that there is ‘significant variation’ from one product to the next and switching an epilepsy patient’s treatment could be ‘life-threatening’.
“With the 1 July deadline for Bedrolite supply to cease from the Netherlands looming ever closer, we made it clear we wanted an extension to the agreement to stop the situation becoming dangerous for Alfie and the other patients receiving this vital medicine,” commented Deacon.
“The long term solution of Bedrocan products being made in the UK still has some way to go, but it can be the only solution and we thank everyone who is working very hard to achieve this.
“This is still a long way off from being okay, but for now we have the pressure taken off on the supply issue.”
With limited access to medical cannabis on the NHS, families are still calling for the Government to help fund their children’s prescriptions, which can cost thousands of pounds each month.
Deacon added: “The ever-pressing issue of financial burden on the many families and patients wishing to use medical cannabis in the UK remains and this is a huge issue which needs dealing with.
“There are many ways in which the Government could step in and help access for very vulnerable people and we will continue working as hard as we can to make things better for all.”
My endometriosis was misdiagnosed as an eating disorder
Sophie underwent a laparoscopy in December that revealed she had stage four endometriosis.
Endometriosis is a painful, long term condition affecting one in 10 women in the UK. Sophie Harrop talks to Cannabis Health about coping with pain, cannabis and living with a hidden illness.
Endometriosis is a condition where tissue similar to the lining womb starts to grow in other areas of the body. It can grow around other organs causing chronic pain. The condition leaves patients in debilitating pain, feeling sick and with difficulty getting pregnant. It can take on average seven years to diagnose in the UK.
Sophie was diagnosed with endometriosis in 2015 after experiencing pains in her side and severe fatigue which meant she slept a lot.
“I got diagnosed by laparoscopy in 2015 after I developed really bad period pains in the right side of my body. I started to feel like something wasn’t right as I was getting a lot of pain so I decided to go to the doctors,” she said.
“I got lucky in that some people can have endometriosis and wait up to eight or 10 years to get diagnosed but it only took me a year. I’m very grateful for getting to that point because it was very stressful.”
Doctors initially assessed her in terms of her weight and diagnosed her with an eating disorder.
“I’ve always been very thin but I eat like an animal, I just have a high metabolism,” said Sophie.
“When I went to the doctors, they thought it was something to do with an eating disorder or Irritable Bowel Syndrome (IBS). There were so many different things that they suggested to me.”
Her doctor suggested she keep a food diary so they could track the amount she was eating. The diary proved that she was eating as much as she said, but she was disheartened.
“I can’t express to you how much I have something wrong with me, but it’s not an eating disorder,” Sophie continued.
“I’m quite a strong-minded person but to others who aren’t, I feel it’s very damaging. People are brought up to think doctors are always right, but I was annoyed they were coming up with these things.”
Sophie had a laparoscopy in December 2020, which revealed she had endometriosis across her bowel and bladder. The condition is measured in different stages, that map the depth and areas affected by the tissue.
Sophie was told she was stage four which means it is the most severe. At this stage, endometriosis is now widespread and deeply implanted. There may also be cysts on one if not both ovaries.
Life with endometriosis
Sophie had been brought up to be a “tough cookie” and hadn’t realised how bad things were until her laparoscopy. She says her mother also struggled to believe that the pain was that bad, until her scan.
“I never realised how bad it was until the laparoscopy,” said Sophie.
“In your mind, you start to wonder if you have made it up, and my mum never believed me. She came into my room afterwards in disbelief at how bad it was.”
She added: “At the time, I was working at a builder’s merchants as a marketing manager. I was the only woman among 22 men, with a very strict boss. If I had days where I didn’t feel well, he would tell me to get into work. It was hard to be around all these men because I was in so much pain and no one understood it. That’s what I find with endometriosis, it’s so hard to express how you feel.”
Sophie, described a feeling of heaviness, she explained: “When it’s bad, I get this feeling as if I am 90 stone. It’s a feeling like I have something attached to me pulling me down. People can’t relate because no one knows what this feels like, but when you find other endometriosis sufferers, they understand.”
Endometriosis, mental health and ADHD
Sophie now relies on a combination of both medical cannabis and CBD to help her symptoms. She has also been diagnosed with Attention Deficit Hyperactive Disorder (ADHD) and finds this combination of eases the different symptoms of both conditions.
At the time of her laparoscopy, Sophie was already consuming cannabis. She explained that the nurses laughed at her when she said she would prefer to treat her pain with cannabis, rather than the prescription drugs she was being offered. It was a chance encounter with CBD that piqued her interest in what cannabinoids could offer.
“My friend’s dad opened a CBD company and introduced me to it. I had a really bad sunburn with very badly burned thighs. He gave me a little pot of cream which I applied then the next day it was gone. I had to find out more about it, she says.
“Since then I have done a lot of studies and nearly completed a course on medical cannabis and CBD. I spend every day of my life learning more about it.”
The mental health impact of endometriosis which is another area which Sophie feels is misunderstood. She uses CBD to help her mental health, but finds that THC is more effective in helping the pain caused by the condition.
“People don’t understand the mental factor of endometriosis. It’s triggered by stress, so if I’m going through stressful periods in my life then I am more bed-bound and in a lot of pain. I notice with my menstrual cycle that somedays I have days where it feels like the world is against me.
“I take CBD every day without fail but when I had a couple of days off THC, I noticed the pain was still there in the same places, but it was sharper. It was like I had barbed wire in my stomach that was on fire.”
Chronic illness and sports
Sophie is an incredibly active person who takes part in a range of sports, especially hiking which she shares on social media. She wanted to show that not all chronic illnesses are visible and that patients should not be judged by what they post online.
She has now opened an online store and uses her platform to educate customers about the benefits of CBD. She isn’t motivated by the money when it comes to being in business, but wants to provide enough information to empower people to make their own decisions about their health.
“I get a lot of people who say to me that I haven’t got endometriosis, and that I’m not chronically ill by judging me off my social media. It frustrates me because I would never wish the pain or illness on anybody.
“The reason I go out and do these things is that I have a lot of drive and could be in so much pain but will still get up and out as I would rather be in nature. It makes me feel physically better than sitting in my bed,” she said.
“I want to educate people to have the confidence to go try cannabis. Everyone is different and I want to be able to give people the confidence to do their own research and understand their own bodies. I’m not anti-doctor as I wouldn’t be where I am today without my gynaecologist and my amazing surgeon but at the same time, I wish people would think for themselves rather than just going off the doctor’s opinion.”
When it came time to choose the products she would work with, she immediately knew she wanted to include CBD coffee.
“I have my own coffee brand. The reason I introduced coffee into it was that I would always forget to take my dose in the morning but then in the evening, I’m fine. I created the CBD coffee because I thought it could be added into your life quite easily.”
Sophie finds the CBD industry incredibly rewarding to work in.
“I’m so passionate about this industry, she adds.
“People say to me that I’m literally the happiest person ever, but everyone has bad days. We have to have the bad days to appreciate the good days. I definitely feel my happiness and energy comes from cannabis and its helping to balance everything out.”
Long Covid: Experts explore the role of cannabinoids in treatment
Experts have explored the idea of cannabinoid therapy in the treatment of long Covid.
Experts explored the idea of cannabinoid therapy in the treatment of long Covid, in a one-off webinar hosted by the Medical Cannabis Clinicians Society.
Professor Mike Barnes, neurologist and director of the Medical Cannabis Clinicians Society (MCCS), was joined by Dr Anjali Didi, a general practitioner based in Australia and Dr Hosseini, chief scientific officer at BOD pharmaceuticals, to explore the role that cannabinoids could play in treating long Covid.
The webinar, which took place on Tuesday 30 November, was aimed at clinicians who may be treating patients experiencing long Covid patients and are keen to learn about alternative therapies or treatments.
It could not have been more timely, following the emergence of a new concerning variant in the UK, Omicron.
Dr Anjali Didi explained the importance that the endocannabinoid system (ECS) has in the body and how this interacts with different cannabinoids, focusing on CBD, THC, CBG, CBC and CBDV. She highlighted the important role of the CB1 and CB2 receptors throughout the body.
Different cannabinoids may have different benefits associated with them. Studies have shown that CBG may produce a response in skin tumours, while CBC and CBDVA may potentially reduce seizures by up to 40 per cent.
Dr Didi said that although doctors can often feel nervous about prescribing cannabinoids such as THC, they needn’t be worried.
Dr Didi: “THC interacts with the CB1 receptor as an agonist. It’s responsible for intoxicating effects in high doses and that’s important to know when you prescribe. CBD is known to counteract that intoxicating effect, so even though that is something people worry about when they first start to prescribe in low or 50:50 doses, it’s unlikely. The rule is always start low, go slow.”
Dr Didi, who was originally based in the UK before relocating to Australia, has treated both British and Australian patients.
When she began to see long Covid patients at her clinic, she noted a particular set of symptoms occurring in patients around two months post-infection.
“Long Covid was something I was labelling a set of symptoms as, that I had seen in people typically around two months post the acute infection,” she explained.
“The World Health Organisation is now calling it post Covid-19 syndrome or post-acute sequelae Covid (PASC). Some of the symptoms that have appeared in reports and my practice include insomnia, depression, anxiety, fatigue both mental and physical, shortness of breath and cough.”
Her patients also report pain in different places, including the joints, headaches, chest pain, myalgia, neurocognitive dysfunction, involuntary movement and anosmia that persists. Case reports also show repeated pyrexia, fever and dizziness.
It was original research on CBD and sleep that convinced Dr Didi to try prescribing cannabinoids for the treatment of long Covid. She explained her experience with prescribing cannabis for one of her patients.
Long Covid case study
The patient that Dr Didi chose to present was a 42-year-old British male patient who contacted Covid in March. He was diagnosed after losing his sense of smell.
“His initial infection was in another country in March, with an acute loss of smell when he couldn’t smell his coffee. He was quite well for three or four days with just that. He [then] started to present with a lot of diarrhoea and his acute infection with myalgia changed from day 10 to headaches, night sweats and breathlessness with a cough,” she said.
“The biggest thing was that it got worse when he was lying down, so he was sleeping on two or three pillows. He worked quite hard in the finance industry but he has never been well since the infection.”
Dr Didi explained that her patient experienced a lot of disturbance with muscle fasciculations [twitching] in the body which caused a lot of anxiety, resulting in an insomnia pattern that stopped him from being able to sleep.
While her patient was healthy with no chronic conditions, he had mentioned he had asthma and allergies as a child. He came to see the doctor after struggling for nine months after his initial infection. He had also been off work for some months as a result of the illness.
“He had some pill rolling tremors that were worrying him and he had learned to sit holding his right hand to prevent the fasciculations taking over from his thought process. He felt he couldn’t think as well as he used to be able to, but I had no way to measure that and neither did he. He was fatigued enough to not be able to walk his daughter to school which was around a 10 – 15-minute walk.”
As well as brain fog and tiredness, Dr Didi’s patient also reported feeling pain in his muscles and stabbing chest pains which were quite debilitating. However, his biggest issue was lack of sleep and he had tried using prescription medication or alcohol to help.
Dr Didi said: “Since the PASC had started, he hadn’t been able to sleep, sometimes all night. He felt, looking back, that it was the fasciculations but also the speed of thoughts in his head, whether that was caused by lockdown or his worry about his symptoms. It could have been an amalgamation of things.”
Long COVID crash
In April, her patient experienced what he described as a ‘Covid crash.’
Dr Didi outlined the different medications that he had tried but it was after this that she suggested they discuss medical cannabis.
She explained: “He was able to walk a little bit but was very fatigued. In September, he had a two week period where he was unable to get out of bed, enough that his wife was bringing him makeshift bedpans. When he wakes up, he finds that his joints ache and he doesn’t have any balance.”
The doctor started him on a small dose of Seroquel to help improve his sleep, before starting him on a tiny dose of a BOD medical cannabis product with a ratio of 20mg of CBD and less than two per cent THC.
He began to feel less anxious but felt he wanted to reduce the SSRI due to experiencing issues with his libido. Dr Didi increased the medical cannabis but he began to feel increasingly sleepy. He found success with 20mg of Medcabilis [the BOD product] but felt the 40mg was too strong for him.
“I wanted to try to support him in his decision to go back to work,” she added.
“I asked him to try a new SSRI but continue with the CBD which is something he never stopped. He felt that the one or two days he stopped it, he didn’t feel well in terms of fatigue. He was also able to complete 10-minute walks where he could take his daughter to school.”
Dr Didi also presented another case study of a woman with long Covid who struggled to sleep. She was prescribed a 50:50 ratio of THC and CBD. She reported that it helped her daytime anxiety so has been kept on her dose.
Dr Hosseini from BOD Medical Cannabis explained more about the two products used in both case studies.
“The two case studies mentioned included the Medicabilis five per cent, which is a pharmaceutical-grade product available in the UK by prescription,” she said.
“It has 50mg per ml of CBD but in addition, it does have other minor cannabinoids as well. It has less than 2mg per ml of THC which makes it relatively safe for prescribing to manage symptoms related to neurological or psychological effects such as anxiety.”
So can cannabinoids treat Covid-19?
Prof Barnes concluded the panel by touching on the recent research which suggests cannabinoids may help with lung inflammation experienced by Covid patients.
A study from early 2021 revealed that some cannabis strains could potentially help to reduce a type of inflammatory distress referred to as a ‘cytokine storm’.
He suggested that as long Covid is sometimes caused by the cytokine storm, an overreaction of the immune system, through cannabinoids we may be able to reduce the numbers of patients suffering from symptoms.
“Cannabinoids – generally CBD – being anti-inflammatory may reduce the incidence of long Covid,” commented Prof Barnes.
“There are some early indicators from Israel and Canada, so people are looking around that more definitively.”
He added: “It’s a really important question for global health but we still can’t answer it yet.”
Chronic pain and medical cannabis – “Without it my life stops”
Helen Weston, who has lived with chronic pain for 37 years, reveals how cannabis has kept her going.
Helen Weston has lived with continuous chronic pain for 37 years, which affects her ability to do everyday things. When she ran out of cannabis during lockdown, she realised it was the one thing keeping her going.
“If it wasn’t for cannabis there is no way I would still be here,” says 54-year-old Helen Weston, who has lived with chronic pain for most of her life.
“I can’t move without it. I’m bed ridden, with no life, all there is is pain. Cannabis is what helps me cope. It’s the only thing that keeps me going and enables me to get through another day.”
Since the age of 16, Helen has suffered from spine and neck problems, which cause her chronic pain and muscle seizures, affecting her ability to move.
Later in life she began experiencing severe migraines brought on by triggers such as stress, flashing lights and computer screens and has a diagnosis of trigeminal neuralgia, described as sudden, severe facial pain which comes on in unpredictable attacks.
Helen realised early on, while still in her teens, that cannabis was more effective at managing her pain than prescription drugs.
“Since I was 16 I have found that the only thing that actually helps is cannabis,” she says.
“I’ve tried all different kinds of painkillers and muscle relaxants, you name it I have tried it, and none of them were very effective, but had a lot of side effects.”
But the fact that cannabis was masking her symptoms so well, meant her broken spine went undiagnosed for almost a decade, after a spinal fusion failed.
“I was ignored for eight years by doctors after my first spinal fusion broke through no fault of my own,” says Helen.
“The stigma attached to cannabis – that I did mention using at the time – and the fact that it masked the symptoms to an extent and gave me so much mobility, despite a broken spine, meant that nobody believed me.
“By the time I got help in 1998 for my second fusion the surgeon said if I had got there sooner, he could have done more.”
Struggling with stigma
Helen has struggled to access cannabis illicitly for most of her life to manage the continuous pain, battling with both the practical and societal constraints.
Helen has struggled to access cannabis illicitly for most of her life, battling with both the practical and societal constraints.
“I’ve lived with continuous chronic pain for more than 30 years, it’s been a real struggle,” she admits.
“The only thing I could do for my back is swim, if I stop swimming my pain levels get higher and my mobility will get lower, so I just kept swimming but I couldn’t swim without the cannabis, I couldn’t move.
Helen continues: “I’ve even tried growing it on a few occasions, but I just couldn’t manage as I wasn’t physically fit enough.
“I’ve always been an advocate, but it’s got me into trouble. I’ve been treated like a fake, and a lazy pothead. When you get chatting to people at swimming, as soon as you say you use cannabis they don’t want to speak to you again.”
Helen adds: “I’ve had very negative responses from the medical profession, but it’s the cannabis that is keeping me alive.
When her cannabis supply ran out during the coronavirus lockdown last year, Helen got a glimpse at what life would be like without it.
“It was unbearable,” she says.
“I was experiencing severe headaches and the pain was immense. I knew it was legal at the time, but my headaches meant I couldn’t do the research on the internet.
“Everything in my body said just end it. If it wasn’t for my counsellor talking me down from one week to the next on the phone, and my friend who went out on a limb, I would have given up. If I run out of cannabis my life stops.”
Helen managed to get hold of a small amount of cannabis through a friend’s neighbour after approaching her and admitting she was “desperate”. It kept her going until she was able to make an appointment with a clinic in the UK.
She now has access to a legal prescription through Integro Medical Clinics, the impact of which has been life changing, she says.
“It really has had a positive effect on my life to get cannabis legally, it’s changed everything,” says Helen.
“I feel safer and more confident speaking about it with medical professionals, I’m not pushed around so much mentally now by it.”
She adds: “When I get it delivered by courier from the cannabis clinic, I still can’t believe it. After all these years I get it delivered legally via courier in a prescription bag, I still have to kick myself.”
Helen now uses a combination of strains, which work for her in different ways, such as helping her movement and motivation so she is able to keep up her swimming, and managing her headaches.
A big part of her life is swimming, which helps to lower her pain levels and improve her mobility, but without cannabis she struggles to
“Although it doesn’t cure it, I’m getting less headaches and they tend to be more mild,” she explains.
“I can use the computer for longer and it takes less time to recover – only a few hours rather than a day or two, so I can respond to an email or do some shopping.”
Something as simple as being able to use the computer for longer has made a huge difference to Helen’s quality of life, allowing her to connect with others in the cannabis and chronic illness communities online and become less isolated.
“My whole life has been about cannabis and I have finally found all these other people that are just like me and they can speak about it openly now,” she says.
“It’s the first time in my life I’ve got other people I can relate to.”
And now that she is comfortable speaking about her experience she is keen to help others access cannabis too.
“I feel really positive about the future, I’m so glad I found the clinic, I just wish it had happened sooner,” she adds.
“I’m not the only one and unfortunately there’s lots of people out there living with chronic pain and disability who probably don’t even know it’s legal, who could be helped by cannabis.”
If you have been affected by any of the topics raised in this article, support is always available. Contact Samaritans on 116 123, email firstname.lastname@example.org or visit www.samaritans.org
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