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Government urged to protect children’s vital medicine

A group of families affected by epilepsy have made desperate plea for government help as coronavirus measures threaten their medical cannabis supplies.

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Twenty families, each with a severely epileptic child, have urged the government to help ensure that their access to medical cannabis, which has transformed their children’s lives, is not shut off by COVID-19 restrictions.

The families, who campaign under the End Our Pain umbrella, have been fighting a long and frustrating campaign to secure NHS access to the medicine since its legalisation in November 2018.

However, there has been an almost total block on NHS prescriptions and the families have had to fundraise around £2,500 a month to pay for the medicine privately and import it from Holland.

Obscure importation rules mean that someone has to physically go and collect the medicine in person, a situation which is now threatened by restrictions on cross-border movements.

Additionally, the families are now struggling to fundraise as most fundraising initiatives usually involve some form of community interaction, a situation that is effectively banned under developing Government guidance aimed at suppressing coronavirus.

Hannah Deacon, whose son Alfie Dingley was at the forefront of the successful campaign to have medical cannabis legalised, said: “Our children are some of the most vulnerable in the country and our families are at breaking point and simply can’t take any more.

“We are overwhelmed with worry.  It surely can’t be beyond the combined resources and wit of the Government to help us.

“We desperately need some security of supply of the medical cannabis that is the only medicine that keeps our children relatively well.”

Jo Griffiths, spokesperson for the families and whose son Ben relies on medical cannabis, said: “We cannot wait any longer, for us this is the perfect storm. In the first instance, our children’s condition means they are extremely vulnerable to the virus. And now it looks like our ability to fundraise and get the only medicine that works for him brought in from Holland is being shut down.  For our children, this is potentially life and death.

“As an example, if my son or his friends deteriorate because we can’t secure access to his medicine it will mean 36 hours in intensive care, a service that is going to be under extreme pressure.

“And if you add in the possibility of our children being infected with coronavirus as well, the consequences are unthinkable.

A spokesperson for the End Our Pain campaign said: “The families that End Our Pain are supporting met with the Secretary of State for Health and Social Care exactly one year ago today when they travelled to Westminster to raise awareness of their plight.

“He promised them action and told them that he would help them. And we know that his team is working to unlock the problems within the NHS and we appreciate that.

“But given the severity of this situation he must assure these parents that their children’s medicine supply will be protected at such a distressing time. We are asking for common sense and compassion to prevail to protect these children.”

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The Jiu Jitsu enthusiast tackling CBD stigma in black and Asian communities

Through his company, CBD Britanicare, Syed Dyas is tackling the taboo of CBD amongst black and Asian communities. 

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Britanicare CBD
CBD Britanicare founder Syed Dyas began using CBD after intense sessions of MMA and Brazilian Jiu Jitsu training.

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Syed Dyas, a Brazilian Jiu Jitsu enthusiast, found CBD helped him recover from an arduous training regime and introduced his parents to it after they were involved in a serious car accident. Now through his company, CBD Britanicare, he’s tackling the taboo of CBD amongst black and Asian communities. 

Nine years ago, Syed’s parents were involved in a major car accident. Amongst a number of serious injuries, his mother suffered from an open fracture in her forearm and underwent surgery on her wrist. 

Syed recalls she was prescribed heavy medications, including gabapentin and Tramadol, which came with a range of crippling side effects, including severe anxiety which later led to suicidal thoughts. 

“She wasn’t herself, she was in a daze most of the time and was really short tempered,” Syed tells Cannabis Health.

CBD Britanicare founder, Syed Dyas

At this point, CBD was still relatively unknown. Syed first heard about the cannabidiol compound while studying for his Master’s degree in pharmaceutical science at University College London and later started using creams and oils after intense sessions of MMA and Brazilian Jiu Jitsu training.

The 33-year-old has been practicing the martial art for six years, training as often as three or four times a week. He recently earned his purple belt, regarded as one of the toughest ranks to reach in the sport. 

With such a physically demanding hobby, Syed has had his fair share of injuries over the years, but says CBD has helped him stay on top form and maintain his health and wellbeing. He uses oil to improve his sleep and aid his recovery, while CBD-infused creams offer more targeted relief when recovering from injuries, he says. 

Several years after the accident, as his mother continued to suffer from the side effects of her medication, Syed suggested she try CBD.

“She had all these injuries and nothing was working for her,” he says.

“She suffered from a lot of anxiety just from travelling in a car and had nightmares and insomnia as well.”

He adds: “It  was quite extreme at that point, so I was exploring alternatives to your typical over the counter and prescription medicines.”

It was an incredibly difficult time for his family, but Syed’s mother eventually did find relief with CBD, which allowed her to come off the opioid medications that were having such a detrimental impact on her life and wellbeing. 

Seeing how much his mother had benefited from the supplement, Syed was “spurred on”, to start his own company, CBD Britanicare, and “share CBD with the nation”.

“It has really helped her and now I want to share that with as many people as possible,” he adds.

With a professional background in pharmaceutical regulation, Syed was well-equipped to start his own premium CBD company which he launched in the midst of the coronavirus pandemic. 

He began his career working for the pharmaceutical giant, Nurofen in Hull, before moving on to work for niche pharmaceutical firms in London. He primarily dealt with patient safety, medical writing and substantiating patient information for a range of different medications and food supplements. 

Having been embedded in pharmaceutical regulation for just under a decade, he says his background has helped him build CBD Britanicare on solid foundations. 

“With my background, I think I was able to register all the information quicker and in greater depth,” Syed says. 

“I’ve seen some people in the industry make mistakes, so I’m very careful with the advertising and marketing of the products.

“We want to reassure the public that we’re following regulations and guidelines from the government and the Food Standards Agency, while ensuring that all our products are lab tested and manufactured to the highest standard.”

 

CBD Britanicare produces a range of oils, from isolates to full spectrum using an olive oil base sourced from Greece and hemp from the UK. The family-run business also produces capsules, cosmetics, e-liquids and hemp-infused teas. 

But although Syed’s mother was willing to give CBD a try, his father was sceptical. 

Coming from an Asian background, Syed says CBD and medicinal cannabis is “looked down upon” in the British Asian community and his dad was against the idea of using a product associated with the illegal drug. 

However, after being diagnosed with early-stage bowel cancer last year, he eventually came around to the idea and started taking his son’s own products to help him during treatment. 

His father’s distrust of CBD is common amongst black and Asian communities, Syed says. With the launch of CBD Britanicare, one of his primary aims is to eradicate the taboo so more people like his parents can discover the benefits of CBD. 

 “Cannabis is obviously illegal in this country and it’s not really part of the culture,” he says. 

“With CBD Britanicare, I really wanted to do away with that stigma and introduce CBD into these communities.”

CBD Britanicare is teaming up with influencers from black and Asian communities to help promote CBD, including Solomon Lefleur, Queensbury Boxing Champion & ISKA World Champion Kickboxer, and Ajmal Khurram, a social media influencer, personal trainer and wellness coach.

Alongside its new partners, CBD Britanicare aims to tackle the stigma and get more people using the supplement who may have otherwise dismissed it. 

Syed adds: “We’ve already partnered with influencers across the country who have built up a big following; mainly people in the communities who are into sports, bodybuilding and MMA. They’ve used and reviewed our products, and many were surprised themselves at how much they benefitted.”

With the passion and determination to tackle misconceptions, CBD Britanicare is one to watch!

For more information about the company and products visit www.cbdbritanicare.co.uk and keep up to date
by following them on all social media platforms.

 

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Patient Voices: Jonathan – “PTSD is hard to talk about, especially if you’re using cannabis”

Jonathan he had no idea why cannabis was helping him so much, until he was diagnosed with PTSD.

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Jonathan, PLEA
Jonathan says having a cannabis prescription and being able to talk about his condition has been 'life-changing'

Jonathan started consuming cannabis six years ago when he was having trouble sleeping, but he had no idea why it was helping him until he was diagnosed with PTSD.

“It’s been life-changing for me, and not just having the medication, but being able to speak about it and open up about my life,” says 28-year-old Jonathan, who is prescribed cannabis to manage his symptoms of post-traumatic stress disorder (PTSD). 

“There are some things I would never have been able to speak about if it hadn’t been for cannabis.”

Jonathan was 22 when he decided to try cannabis to help him sleep.

“I was having problems sleeping and then had very little energy and would struggle to focus during the day – but otherwise I wasn’t aware of anything being wrong with my health,” he says.

“I’d previously tried sleeping pills, but with cannabis I saw much more improvement. It helped my sleep, gave me motivation and it made me feel normal.”

He adds: “It felt like medicine to me but I didn’t understand why it was making me feel better, and I didn’t delve too much into it.”

A few years later, while living in Israel – where the medicinal benefits of cannabis seemed more widely accepted at the time – Jonathan visited a doctor and confided in him about his consumption. 

He was diagnosed with PTSD, in a major breakthrough.

“I’d never put labels on it, but when he said that things started to make sense,” he says now.

“That conversation with the doctor was extremely emotional and relieving for me. I felt like a huge weight had been lifted, as though something hadn’t quite made sense and now it did.”

Returning to the UK, Jonathan began looking into obtaining a prescription for medical cannabis. As well as having a consistent supply of medication, it was important to him to have someone to talk to about his symptoms.

Despite his GP advising him against cannabis use – and his own concerns that PTSD wouldn’t be a prescribing condition –  he completed a self-referral to the Medical Cannabis Clinics and was accepted as a patient last year.

“It’s hard to describe what it means to have a prescription. I can now enjoy life and not feel like I have to suppress a part of myself like I did before,” says Jonathan.

“But the main thing is that I can talk about the fact that this is making me feel better – and it is okay. 

“I needed to speak to a doctor who was understanding about that.”

He continues: “Until now people have been researching online and using their own initiative, but now that we have the opportunities out there for people to be able to talk to their doctor and that is life changing.”

Being more vocal about his medical cannabis consumption, led Jonathan to join the PLEA (Patient-Led Engagement for Access) Patient Working Group earlier this year. 

The non-profit organisation was founded in 2020, to stand up for patients and challenge the inequalities in accessing cannabis in the UK. 

One of its core aims is to empower patients to share their experiences with medicinal cannabis and to ensure their voices are at the centre as the sector develops. 

“After I got the prescription I wanted to express how I felt and to be more involved in the space,” says Jonathan.

“You need people who are willing to take the first steps and I love how PLEA is so patient-based. 

“I feel really comfortable getting to know other members, it sounds a bit old school but cannabis really can bring people together.”

While there have been some recent issues with supply and demand of cannabis-based medicines in the UK, Jonathan has been happy with the care he has received from the clinics, and believes the country is well-placed to cultivate a world-leading cannabis industry in the years to come.

“I think there is space for a very different industry to anything that exists in the UK at the moment, and we have the opportunity to learn from the mistakes of other countries, he says.

“Prices are coming down and I think we’re in the perfect position for a really successful sector.”

But outside of the private sector, he would like to see more awareness and understanding of how cannabis can be beneficial for mental health conditions, as well as physical.

“I don’t think labels are that important – most PTSD patients wouldn’t go to the doctor and say ‘I think I have PTSD’ – but it would be nice to see more focus on mental health. In the private clinics I think they treat mental health issues the same as physical conditions,” he says.

“PTSD is a hard thing to talk about, especially if you’re using cannabis. I didn’t go to the doctor for a very long time as I felt I had nothing to say,” Jonathan adds.

“I got such a boost from the medical cannabis prescription and from talking to doctors about it. I would have really struggled without it.”

 

In our Patient Voices series, we’re sharing the stories of members of PLEA’s Patient Working Group.

Read what medical cannabis means to Eppie, Gillian and Margaret 

Find out more about the PLEA patient working group here & visit pleacommunity.org.uk  for further resources 

 

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Not THC: Spelling out the science behind CBD

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Not THC's flagship product is a blueberry kush oil which is based on the well known cannabis strain

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The duo behind CBD brand Not THC have found a way to combine a background in science with a desire to do good, in a way that makes perfect sense.

You have a background in science, you want to start a business but you don’t really know where to direct your efforts – what do you do?

CBD, naturally.

That’s what happened to Ngoni Madinga and Iza Mavuru, the duo behind CBD brand Not THC, a company based in the North of England offering a range of products.

Set up in May 2020, the company already has a portfolio of offerings designed to make CBD a seamless part of everyday life.

The company was created as a business venture that put the founder’s experience of working in laboratories to good use.

Ngoni told Cannabis Health magazine: “We knew we wanted to start a business that incorporated our backgrounds in science with our sincere ambitions to try and help other people.

Not THC co-founders, Ngoni Madinga and Iza Mavuru

“When we set out, we didn’t know what that would be, it was just a concept we had.

“Then we came across CBD and did some research and learned more about it.

“We both thought this is something that is definitely helpful and as scientists we are able to understand how it functions and then explain that to people.

“It seemed like an appropriate fit for our vision.”

At the centre of the company is the idea that you need to be able to explain the science behind the products to consumers who might be wary about trying something new.

Iza said: “We come from industries and backgrounds that deal with data analysis and explaining things through science in a way that makes sense to people.

“That has given us an advantage to be able to connect with people.”

She added: “CBD can very easily look like a sham or a scam product when you are new to it.

“It’s very important to have people in the industry who understand how it works at a scientific level and people with personal stories that can share their knowledge.”

The pair met six years ago and formed a close personal relationship which turned into a business relationship after working together in different labs on and off over the years.

Both Ngoni and Iza are originally from Zimbabwe but have spent much of their lives in the north of England where the company is headquartered.

Their flagship product is a blueberry kush oil which is based on the well known cannabis strain but is lab tested to ensure it contains no THC, the prohibited compound in the plant that produces the ‘high’.

But for customers looking for a more seamless way of consuming CBD, Not THC also offers teas and creams that can be substituted into your daily routine.

Speaking about their signature Lemon Che-tea and Khulula Cream, Iza said: “We wanted to give a great offering to our customers. Our goal is for CBD to be used on a daily basis to improve overall health and wellbeing.

“Something like our tea is accessible – it’s a gorgeous, nice tasting tea but you’re getting a 25mg dose of CBD from a tea bag.

“You don’t need to think about too much, but you’re still getting the benefits.

“And the cream is amazing – we recommend it as a hand and face lotion but to be honest it can be applied anywhere on the body.

“It’s incredible in terms of the effects it has on the skin, it’s very enriching and has a unique, lovely smell.”

Not THC is currently running a sale until 21 June, with plenty to buy one, get one half price and buy two, get one free offer.

They also offer a 15% discount on the first Saturday of every month.

Visit www.not-thc.com or contact 0113 328 1118 / info@not-thc.life

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