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Living with endometriosis – how medical cannabis is dulling the pain

Throughout Endometriosis Awareness Month, we spoke to people across the world living with the debilitating condition.

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Cannabis Health spoke to people across the world living with endometriosis

Throughout Endometriosis Awareness Month, Cannabis Health spoke to people across the world living with the debilitating condition, about how access to cannabis helps relieve symptoms from chronic pain to anxiety.

Endometriosis, an extremely common inflammatory condition, is present in about one in 10 women and non-binary people, aged between 25 to 40 in the United Kingdom – but can affect people at any age.

It occurs when cells, similar to those lining the womb, grow elsewhere in the body, such as the bladder, ovaries, colon and rectum, and react to changing hormones in the menstrual cycle.

“They grow thicker in size as oestrogen levels peak in the middle of the cycle and then they break away and start to bleed like the lining of the womb during a period,” explains Dr Wendy Holden of Sapphire Medical Clinics.

US research programme studies cannabinoids in ovarian cancer

“This blood is slowly reabsorbed by the body but the process can cause inflammation, pain, and the formation of scar tissue.”

Endometriosis can be difficult to diagnose due to its symptoms mirroring other conditions and the fact that it can only be officially diagnosed through a laparoscopy – a surgical procedure. The average diagnosis time from onset of symptoms is seven and a half years, with many patients being misdiagnosed or not being taken seriously.

Those who have the condition often suffer from painful periods, painful sex, pain in the lower abdomen, pain on passing a stool and urinating, or lower back pain. This can then lead to difficulty sleeping, inability to focus on daily tasks, and in some cases a mental health decline.

Managing chronic pain is the first line of treatment and can take the form of painkillers such as paracetamol, ibuprofen, mefenamic acid and opioids, or hormonal treatment, or both.

For some people, symptoms can be controlled at this stage, but for others surgery is the next option – however, it is only successful in around half of those cases with pain often reoccurring.

This is where medical cannabis comes in.

The plant was legalised to be prescribed by specialist medical consultants under regulations published in the UK in November 2018.

It is currently only available privately, for patients who have not experienced sufficient relief of symptoms from conventional treatments – however some experts believe that it could be effective prior to this stage.

The evidence

A 2019 study published in the Journal of Obstetrics Gynaecology Canada said one in eight Australian women with endometriosis uses cannabis to alleviate pain and other symptoms.

Researchers from NICM Health Research Institute, Western Sydney University and UNSW Sydney surveyed 484 Australian women with endometriosis between the ages of 18 and 45.

The participants rated the plant-based medicine as the most effective way to self-manage the disorder, above yoga, dietary changes and heat.

Along with reducing pain, the cannabis significantly reduced symptoms of nausea and vomiting, gastrointestinal symptoms, problems with their sleep, depression and anxiety.

Reported side effects were mild and relatively rare.

An Australian study published last November, reported that a high percentage of endometriosis patients found cannabis helped with their condition-related pain and improved their mood.

The 252 participants had legally obtained cannabis products that they used at home while reporting symptom changes over time on an app.

Researchers concluded that: “Cannabis appears to be effective for pelvic pain, gastrointestinal issues and mood, with effectiveness differing based on method of ingestion.

“Clinical trials investigating the tolerability and effectiveness of cannabis for endometriosis pain and associated symptoms are urgently required.”

Holly, 21, Western Australia

Living with endometriosis - how medical cannabis is dulling the pain

Holly first knew something was wrong at the age of 13 when her periods started and she began to bleed so heavily that a super tampon and overnight pad became quickly saturated.

Her GP prescribed her with an oral contraception pill which, she told Cannabis Health,“hid” the growth of her condition for the following eight years.

At the age of 20, she stopped taking the pill and numerous symptoms emerged including painful sex, severe cramps, chronic fatigue, heavy bleeding, IBS, incontinence and bloating.

In August last year she had a laparoscopy which resulted in a diagnosis of endometriosis on her uterus, bladder, bowel, pelvic side walls and elsewhere.

An attempt to remove the cells was unsuccessful and Holly’s symptoms worsened, so she is now seeking a specialist to perform another surgery to find some relief.

Along with traditional pain relief medication, Holly has tried a TENS machine, bath salts, herbal teas, pelvic floor therapy, physiotherapy, naturopathy, special diets and regular visits with mental health professionals.

But it was not until she discovered cannabis that she was able to see a dramatic reduction in her symptoms.

“I first turned to cannabis during a three-day flare that had me pinned to my bathroom floor for the majority of that time. I was wailing in pain, vomiting, shaking with no relief.  I decided I had nothing to lose.”

She said a prescription to medical cannabis has helped her to regain a life she thought was stolen.

“I was able to socialise, manage my pain and finally sleep a full night with no painful wake up calls,” adding that it helped her to regain her appetite and eat without pain.

While she has experienced some opposing views on her choice of medication from friends and family, she said she has worked to move past that.

“It has allowed me to see life past pain and suffering. To appreciate the beauty of life around me and want to be a part of it all.”

Holly’s final thoughts?
I wish that people could be more understanding of just how debilitating this illness is and care enough to advocate for change. 
I wish that for one day, us Endo-Warriors could wear our illness on the outsides of our body, maybe then there will be a greater urgency for change.

 

Kerry*, 25, UK

Endometriosis: woman sad comtemplative looking out the window alone.

Kerry has always suffered from incredibly uncomfortable periods and from the age of 15 was forced to miss weeks of school due to the pain.

Unlike many sufferers, she was aware of endometriosis as her mother lived with it, and knew that it was likely she shared the condition.

When Kerry went to university, she approached her GP explaining her background, but it still took the entire duration of her course for her to get a diagnosis.

At the age of 21, she had a laparoscopy and was diagnosed with stage two endometriosis. She was prescribed a series of medications for the pain before a second surgery last June.

As of next week, I’ll be nine months post op and I’m in the same amount of pain as I was before,” she told Cannabis Health.

The high levels of discomfort mean that she has to use a cane to get around, and often finds day to day tasks difficult.

Kerry was introduced to cannabis through her partner at university and noticed very quickly that it “really, really helped”.

“When I’m in pain, I usually don’t have an appetite, so it helps with that. But it is mostly for pain relief,” she said.

Kerry has experienced stigma from some members of her family around her use of cannabis, but says she doesn’t mind what other people think.

While she does not have a problem accessing it, the anxiety of using it would be alleviated by having a legal prescription.

Kerry’s final thoughts?
1.5 million people are living with endometriosis in the UK, but we still don’t know what causes it. Even knowing what it was, it still took me five years to get diagnosed from my first visit to the doctor.

 

Christina, 27, Canada 

Living with endometriosis - how medical cannabis is dulling the pain

Christina, from Toronto, Canada, began to have symptoms of endometriosis at the age of eight but was not diagnosed until she reached 19.

She had for a long time not known what was going on with her body, but as a teenager had always had really painful, very heavy and debilitating periods. Sometimes the pain was so bad it caused her to be bedridden for up to three weeks at a time.

When she was finally diagnosed, she joined an endometriosis support group and heard from some of the members that medical cannabis had helped them.

Christina had tried cannabis herself recreationally at school and noticed that it helped reduce the pain, improve her appetite as well as brighten her mood. She visited a clinic and was prescribed the medication, which, while it did not completely rid her of the symptoms, made them much more manageable.

“Getting [cannabis] prescribed really changed things for me because I started being able to use it consistently,” she said.

She experimented with different strains or different methods of using cannabis until she found what suited her.

But her cannabis journey came to an end following a second surgery to remove the endometriosis from parts of her body including her diaphragm and lung.

She said this made her nervous about vaping – her preferred method of administration – and she is looking at other methods such as teas or creams.

Christina believes that cannabis should be “one of the first symptom relief methods offered – definitely before addictive opiates or hormonal therapy”.

“With cannabis there’s a lot less harmful side effects. But we need to get the doctors on board with it as well.”

Christina’s final thoughts?
Endometriosis is not just a bad period, it’s a serious health condition. It’s a worldwide issue and there is a lack of understanding of it among the public and those in the medical system. We need more awareness, research and funding.

 

Aimee, 29, Ireland

Aimee got her first period when she was 11-years-old and within a couple of months the bleeding became unbearably heavy.

“I needed plastic sheets on top of tampons and pads, and nothing seemed to stop the horrendous bleeding,” she told Cannabis Health.

Her mother did not recognise the symptoms as her three older sisters had not suffered with their periods the same way – so she took her daughter to the GP to find out more.

For 10 years Aimee was prescribed a host of patches, pills and injections, but not given a correct diagnosis.

When she turned 21 she was finally offered a laparoscopy, during which she was diagnosed with endometriosis and some of the offending cells were scraped away.

She was delighted to finally know what was wrong: “All I knew was, I wasn’t crazy. I do have something wrong with me.”

However, the pain continued and Aimee was referred to a specialist. Three years later she had a second surgery which still did not reduce the pain, and she found herself bed-bound.

Through desperation she travelled abroad to Romania for surgery, which found that the endometriosis had spread to her diaphragm, ovaries and pelvis. She is now on medication to stop her periods and reduce some of the associated pain.

Aimee had used cannabis recreationally but not considered its pain relieving effects until her mid 20s when she stopped using alcohol to self-medicate.

She has come up against some barriers however, as she does not meet the Irish Medical Cannabis Access Programme criteria for a medical cannabis prescription.

“My goal is to have cannabis removed from the Misuse of Drugs Act,” she said. “Because as long as it’s there… we don’t have any opportunities for research.”

She added that a freer cannabis industry could support farmers, cut social welfare costs and reduce stigma.

Aimee’s final thoughts?
I wish people would open their minds and try to empathise or understand someone else’s reasoning for their choices and medication.

 

Soph, 26, UK 

Living with endometriosis - how medical cannabis is dulling the pain

Soph is a great supporter of natural methods of pain relief and was glad to find that cannabis allowed her to medicate naturally against the pains of endometriosis. She has become fascinated by the plant’s numerous medical uses and has spent a lot of time researching it over the years.

“I absolutely love it. It’s so interesting how it can impact people’s lives,” she told Cannabis Health.

“I’m so passionate about it because it makes me sad that people are using all the things that are having detrimental effects elsewhere in the body.”

Soph, who has been diagnosed with endometriosis, is not using any prescribed medication, only supplementing the cannabis with other natural remedies such as magnesium, Omega 3 and 6 and other foods with anti-inflammatory properties.

She finds cannabis helps with her pain, improves her appetite and allows her to have a restful night’s sleep.

As a strong supporter of medicinal cannabis, she is happy to talk to her family about it, but she still experiences some stigma and avoids conversations on the topic with colleagues.

She also says that many people are uneducated about endometriosis and do not understand the extent of pain that a sufferer often has to endure.

In the mornings she can often feel sick, dizzy and experience brain fog making it difficult to do everything she wants to.

“Sometimes I feel like I’ve literally got sandbags attached to my waist, dragging me down,” added Soph.

“People just don’t understand how you can look totally fine and still be living with a chronic invisible illness.”

Soph’s final thoughts? I wish people would realise that having to put on a brave face every day is difficult, especially when your body is attacking itself.

KJ, 25, UK

Living with endometriosis - how medical cannabis is dulling the pain

KJ has had a different experience of endometriosis as a non-binary person suffering from what is commonly thought of as a female condition.

They spent their teenage years not only struggling with their gender identity but also with immense amounts of pain and discomfort caused by the disorder. 

KJ’s periods started when they were 10-years-old, and the pain got progressively worse each month. 

At 15, they began to take a contraceptive pill which somewhat dulled the pain. But it was not until KJ was 17 when they began to experiment with cannabis, that they got some real pain relief.

“It was finally something that helps with the pain,” said KJ, who found it also helped them to eat and sleep. 

“There’s no pain relief that’s ever helped me apart from cannabis.”

KJ was diagnosed with endometriosis about six years after their first visit to the GP.

But as a non-binary person, KJ explained that there are certain places – particularly on the internet – that they will avoid talking about their condition due to lack of understanding.

KJ has also experienced discrimination from clinicians, they said, especially when it comes to talking about having a hysterectomy, which they had to fight for.

“Getting clinicians to actually listen has been really hard. Every time I went to a new appointment, it was almost like I was going one step forward, five back,” they said.

KJ’s final thoughts?
Endometriosis is not just a cis, straight woman’s disease.

 

*Some names have been changed

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My daughter’s seizures reduced by 95% on medical cannabis – why is it not available on the NHS?

Clover Carkeet’s family have had to fight for her to maintain access to the treatment

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My daughter’s seizures reduced by 95% on medical cannabis
Emily Carkeet with her three-year-old daughter Clover

Three-year-old Clover Carkeet’s seizures have reduced by 95 per cent with medical cannabis – so why has her family had to fight so hard to maintain access to it?

Clover had her first seizure at just 12 weeks old. Doctors diagnosed her with infantile spasms, a ‘catastrophic’ form of epilepsy that is among the most brain-damaging conditions of its kind. 

Early signs of the condition were discovered when her mum, Emily Carkeet, was 30 weeks pregnant. 

She was told that Clover was missing the part of her brain that connects the left hemisphere to the right, known in medicine as the corpus callosum. 

Seventy five per cent of newborns with the condition will grow up to live completely normal lives, but sadly Clover is among the minority that develops neurological issues from early childhood.

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Like many children diagnosed with rare forms of epilepsy, Clover was started on a heavy dose of steroids which she took for six weeks. 

“It was a really awful time for us,” Emily recalls. “They made her extremely poorly. She was so upset and angry. She was basically just staring into space.”

After the steroids, Clover was started on a strong antiepileptic drug called vigabatrin, with her enjoying five months without seizures. The freedom gave her the chance to develop, and even learn to crawl.

My daughter’s seizures reduced by 95% on medical cannabis

Spencer, Emily and Clover Carkeet

Trying CBD

But it wasn’t just the vigabatrin that was aiding her recovery, Emily believes. 

When Clover was four months old, her parents began giving her tiny doses of over-the-counter CBD oil called Hayleigh’s Hope. In the early days of Clover’s diagnosis, Emily had connected with hundreds of families whose children suffered from similar conditions.

“I was always searching for the answers for Clover,” Emily says. 

“I found that the children who were taking some form of CBD all seemed to be developing fairly normally. Their seizures were well controlled and they were spending less time in hospital.”

She continues: “Every time we increased her dose she would learn something new, physically her development was ahead of some of her neurotypical peers, she crawled at nine months and walked at 13 months, all these things that they said she wouldn’t do.”

But after five months Clover relapsed and developed something called focal seizures. Despite increasing her pharmaceuticals, her condition worsened until she was having as many as 100 seizures a week.

95% reduction in seizures

At this point, Emily and her partner, Clover’s father, Spencer, were at a “crossroads”. Either introduce more pharmaceutical medication or pursue a CBD prescription.

“It became abundantly clear that what we could buy over the counter just wasn’t strong enough for her,” Emily says. 

“We were at a crossroads really; we could either add more meds… but we had made a vow in those early days that that was not what we wanted for her. We wanted to give her a chance to have a quality of life, and we believed the best chance of that was by staying as far away from heavy duty drugs as possible. 

“That’s when we decided to go down the prescription route.”

Clover met criteria and was able to access a legal prescription for medical cannabis in August 2020. By November, her seizures had dropped to just three or four per week – a 95 per cent reduction. 

The following April, the family added the THC-containing oil Bedica to Clover’s course of medication, which is when the number of seizures fell “dramatically”.

“THC was the game-changer for her. She was sometimes going 10 days without a seizure,” says Emily.

“The biggest doubt for me was that THC might have detrimental behavioural and developmental effects, it worried me, but less than having her on a benzodiazepine, wired up to machines in hospital. As her mum I’ve always followed my gut instinct.”

My daughter’s seizures reduced by 95% on medical cannabis

Clover’s parents say THC was a “game-changer” for her

Battling the BPNA 

Despite Clover’s parents seeing a huge improvement in her condition and quality of life, the family faced losing her access to the medicine when her prescribing doctor was reported to the General Medical Council (GMC) last year. 

Although she doesn’t know the details of how it came about, the complaint was made shortly after Emily wrote to Clover’s neurologist in the NHS outlining her daughter’s positive response to cannabis-based medicines. 

The complaint, believed to have come from the British Paediatric Neurology Association (BPNA), centred around Clover’s age as at the time, at 17 months old, she was the youngest child in the UK to be prescribed the medicine. It stated that the doctor was not a neurologist and therefore should not be prescribing. 

BPNA guidance claims that cannabis medicines can only be prescribed in children with epilepsy by a paediatric neurologist. But this is not stated anywhere in current legislation. 

The case ended up being dismissed, with the GMC’s independent medical expert quoted during the review as saying the BNPA position is “probably not in the best interests of children”.

“Doctors sign a Hippocratic oath then they don’t do what’s best for their patients. It’s very negligent to deny these kids a medicine that clearly works for them,” says Emily.

“What I don’t understand is this necessity to throw so many drugs at them just because they’re licensed.

“In my opinion – and logic should rule here – if a child finds something that works, why would you then force them to go back and try all these other things that may be detrimental to them? I find this concept of using cannabis as a last resort absolutely crazy.”

Emily believes that the BPNA guidance on medical cannabis is part of the reason why NHS access is so limited for children with epilepsy.

“They complained about Clover and made no effort to speak to me about how she was doing at all. They don’t listen to us as parents, even though, when you’re a parent of a child with epilepsy, you become the expert on their condition,” she says.

“It’s just so wrong on so many levels.”

Emily and Spencer, with Clover, on their wedding day recently

A “constant juggling act” 

Clover is doing well developmentally and starting to communicate more as she reduces her prescription drugs, something Emily puts down to the medical cannabis. 

“I had read about neuroprotective benefits from cannabis and genuinely think that because she’s had it in her life since she was so young, it’s probably protected her brain,” she says. 

“We’ve never seen any regression from any of her seizures and I honestly think it’s the cannabis we have to thank for that.”

She attends nursery and Emily has been able to return to work. Something which has been a lifeline in funding Clover’s prescription, which currently costs around £1,000 a month. 

Emily and Spencer are able to fundraise, but still pay £600 each month out of their own pockets. Emily describes the situation as a “constant juggling act”.

“I feel an extreme pressure to be working more than I am because we have this prescription to pay for,” she says.

“The person who suffers from this is Clover because she doesn’t get as much of her mum as she needs.”

But despite their struggles, Emily feels lucky they have access to the treatment when so many families in the UK are unable to obtain a prescription even privately. 

There is currently only one paediatric neurologist prescribing for children with epilepsy in the UK, and he is not currently taking on any new patients. 

“There are so many parents who are desperately trying to get this medicine, because they see the results,” she adds.

“It’s an injustice that they can’t access it.”

 

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Cancer survivor reveals how medical cannabis “saved his life”

Barry Freeman swapped his pain medication for medical cannabis.

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A US cancer survivor has shared how medical cannabis helped him manage debilitating pain and stop his usage of multiple medications.

Texan cancer survivor Barry Freeman – who also suffers from PTSD – introduced medical cannabis into his treatment plan in 2019 and has since eliminated the consumption of dozens of pain pills while experiencing a drastic reduction in symptoms with no side effects.

In 2015, a time he describes as “the worst year of his life,” Barry lost his son and received a stage-four colorectal cancer diagnosis.

After being initially turned away by multiple doctors due to his terminal diagnosis, Barry underwent 37 rounds of chemotherapy and radiation treatment. He finally achieved remission in 2017 but his cancer treatment’s lasting effects combined with emotional distress led to continued symptoms of chronic pain, anxiety and panic attacks.

“I was in a very dark place that year. Living with cancer and losing my son caused severe depression on top of a barrage of physical symptoms that made my life miserable,” Barry said.

Barry then sustained a debilitating shoulder injury in 2018, exacerbating his condition and leading to a prescription of 12 pain pills per day. It was then his physician recommended medical cannabis as a treatment option.

“Medical cannabis saved my life,” he continued.

“I felt more relief than I’d ever felt through any pain pill. I could feel the calming effect of the medication come over me. I feel better than I did at 45-years-old. Emotionally and physically, it’s extraordinary to be here now and feel this way after being so sick.”

The Compassionate Use Program (CUP) was enacted by the Texas legislature in June 2015, allowing for the first legal use of medical cannabis products by patients with intractable epilepsy.

It was not until the program expanded in 2019 to include terminal cancer, all forms of epilepsy, autism, multiple sclerosis, spasticity, ALS and hundreds of neurodegenerative disorders that patients like Barry became eligible to access medical cannabis.

Following the 2021 session, the programme expanded to include all cancer patients and those suffering from PTSD.

Barry was provided with cannabis by Texas Original Compassionate Cultivation , a licensed medical cannabis producer that works across the state.

Morris Denton, CEO of the company, believes that more still needs to be done to improve access for patients in Texas.

“Barry was ineligible for life-altering medication for almost four years after his initial diagnosis,” Denton said.

“No one should have to endure a delay in treatment for symptoms that medical cannabis is proven to relieve. This is why continuing to expand the Compassionate Use Program matters.

“There are thousands of Texans who can and should be benefitting from the power of medical cannabis now and our team is dedicated to expanding the CUP to include each of them.”

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Growing “appetite” for medical cannabis among UK clinicians

Over 300 health professionals have signed up to learn more about medical cannabis.

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Growing "appetite" for medical cannabis among UK clinicians
The Medical Cannabis Clinicians Society (MCCS) now has revealed it now has over 300 members.

Over 300 health professionals have signed up to learn more about medical cannabis in the UK since 2019.

Just two and half years after its launch, the Medical Cannabis Clinicians Society (MCCS) now has revealed it now has over 300 members, as it prepares to launch a series of in-person events this year.

Over 300 clinicians, including specialist consultants in a wide range of specialisms, GPs, nurses and allied health professionals, are now active members of the society, sharing best practice, learning from each other, and accessing regular expert support. 

Bosses say this growth demonstrates the “appetite” of health professionals to learn more about this “life-changing” medicine.

Fibromyalgia: A banner advert for the medical cannabis clinic

Throughout 2022, the MCCS executive committee is planning to hold five in-person events across the UK, offering attendees a practical introduction to medical cannabis and CBD. 

The first events will take place in Manchester on Thursday 12 May and Belfast on 1 June, followed by sessions in Edinburgh, Cardiff and London before the end of the year. 

Further events are expected to take place in Liverpool, Newcastle, Bristol, Birmingham and Dublin in 2023.

Open to clinicians, medical students, scientists, researchers, professionals and patients curious about medical cannabis and the current state of prescribing, evidence and availability in the UK, the events will take place from 6.30pm for two hours, with networking and a panel Q&A for attendees following the speakers. 

Prescribing doctors from the executive committee will be joined at each event by society chair, Professor Mike Barnes, as well as medical cannabis patients.

Sativa Learning’s Ryan McCreanor and Volteface’s Katya Kowalski, will also present education opportunities and research insights. 

Professor Mike Barnes, chair of the Medical Cannabis Clinicians Society said:  “The growth we have seen in our membership over the last two and a half years demonstrates the appetite the UK’s clinicians have to learn about this life-changing medication. 

“With significant restrictions meaning that only Specialist Consultants can prescribe, little to no cannabis education for medical students, and the fact that medical cannabis is only available via privately prescribing doctors, the number of clinicians choosing to educate themselves and access support via the Society should be noted by leaders in the health service and in Government.

“Our programme of events, which will see us visit Manchester, Edinburgh, Belfast, Cardiff and London this year, and Liverpool, Newcastle, Bristol, Birmingham and Dublin in 2023, are a fantastic opportunity for clinicians and medical students particularly to learn the facts about this treatment and practical steps to prescribing.”

Hannah Deacon, executive director of the Medical Cannabis Clinicians Society, added:  “The Medical Cannabis Clinicians Society believes that everyone who could benefit from medical cannabis should have access to it. Our mission is to give clinicians access to evidence, training, expert guidance, peer support and licensed product information so they can prescribe life-changing medical cannabis treatments to all patients in the UK, on the NHS. 

“The Society is an expert-led, independent, not-for-profit community, dedicated to bringing this safe, legal and effective medicine to people living with chronic conditions.” 

The first event will take place at The Midland Hotel in Manchester at 6.30pm on Thursday 12 May. 

Dr Niraj Singh, consultant psychiatrist from The Medical Cannabis Clinics and executive committee member of the MCCS, will share his experience of becoming a medical cannabis prescriber. 

Prof Barnes will explore the history and evidence for medical cannabis.

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