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“I feel hugely let down by the system”: Patients fall victim to UK’s cannabis supply issues

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UK medical cannabis patients report being left without medication as prescriptions are delayed

Medical cannabis patients report being left without medication, as supply issues become a “major concern” for the UK sector.

A surge in demand for cannabis medicines, combined with the increased red-tape facing importers has led to patients experiencing severe delays to their prescriptions and even running out of medication entirely. 

One patient, Sam*, said she had been without medication for 10 days after her prescription didn’t show up.

In February, the pharmacy had been unable to fulfil her regular prescription and arranged for a replacement product containing lower levels of THC.

The next month’s prescription, which was due to be delivered on 16 March, never arrived and Sam claimed that she struggled to make contact with anyone at the dispensary to find out why. When Cannabis Health spoke to her on 25 March she had still not received it, but was expecting a delivery the next day. 

“My anxiety is through the roof,” said Sam, who is prescribed cannabis for PTSD, and struggles with anxiety and depression, as well as living with symptoms of systemic lupus, fibromyalgia and chronic fatigue.

“I had managed to control it for many months with cannabis, but I need the continuity. All of the strides that I had made with my mental health have taken a backward step.” 

She continued: “I’m not sleeping any more, my nightmares are back and I’m struggling to regulate my emotions.

“All of my physical issues are getting worse again because cannabis is a big help with the inflammation. But my main concern is my mental health, physically I can be falling apart, but if my mental health isn’t right, what’s the point?”

The stress and uncertainty around what was going on with her prescription made matters worse for Sam.

“These are things I can’t control. I can’t get any communication from anyone at the clinic and I still haven’t gotten any information out of [the dispensary] whatsoever,” she said.

“I do feel hugely let down by the system. This is something that should be helping me and instead it has created huge amounts of anxiety.

“I came off antidepressants because I was able to live a normal life thanks to cannabis but I can’t imagine that the NHS would ever leave someone without mental health medicine.”

As the awareness of medical cannabis grows and demand increases, Sam believes that the current system is unable to cope and the care patients are receiving is suffering as a result.

“I don’t think that the process was fully thought through [when the law changed],” she added.

“It seems like more people are aware of cannabis medicines now and are seeking them out, but unfortunately that means my care is decreasing.

“Resolving the supply chain and ensuring that there are checks are in place to ensure that the patient isn’t being left without is hugely important.”

Brexit blockades

Hannah Deacon, co-founder of the Medical Cannabis Clinicians Society and cannabis consultancy firm Maple Tree, whose son Alfie Dingley relies on a prescription for medical cannabis, was recently faced with a similar prospect.

Hannah Deacon and son Alfie Dingley.

Following the end of the Brexit transition period, Bedrocan products from the Netherlands could no longer be legally imported into the UK, leaving dozens of patients who rely on these oils for severe epilepsy at risk of losing access to their medication.

The Dutch government confirmed it would continue to supply these medicines until July while a “long-term” solution was reached. But there is still uncertainty about what will happen after this date.

As the UK cannabis industry continues to grow, Hannah believes companies must put patients first and their needs should be at the heart of the sector.

“The creation of the cannabis sector is vitally important for many millions of patients in the UK, she said.

“However currently, the supply of products to patients is coming under extreme pressure due to many factors and sadly there’s only one victim – the patient. 

“It is imperative that the sector does all it can to put patients first and ensure supply is available when needed and patients are not left without supply. 

“We must not see the promise of products which then aren’t available as this is detrimental to the sector but mostly to the patients who rely on it.”

Home-grown cannabis

The cannabis patient advocacy group, PLEA (Patient-Led Engagement for Access) also says that supply issues have become a “major concern” for UK patients, with members of its Patient Working Group reporting similar experiences to Sam.

Advocacy director Lucy Stafford told Cannabis Health that there was an “urgent need” for changes in regulations to allow for mass importation of cannabis medicines into the country. But equally important is that products can be grown and manufactured on UK soil.

“Supply issues and delays are a major concern for medical cannabis patients,” she commented.

“Without consistent access to medication, patients can experience significant distress from the uncertainty and can quickly experience the return of debilitating symptoms, impacting health outcomes and quality of life.

“To resolve these issues, patients need access to a wide range of cannabis-based medicines on prescription. There is also an urgent need for changes in regulations to allow mass importation of cannabis-based medicines, as well as access to medications grown and processed in the UK.”

Last month it was announced that major European cannabis company EMMAC Life Sciences had partnered with Sapphire Medical Clinic to bring the first UK-manufactured EU GMP medical cannabis flower to patients. The company says it will use data collected from the clinic’S Real-World Evidence platform to inform its production and supply chain.

The UK Medical Cannabis Registry captures patient and product data and will allow EMMAC to respond to product effectiveness and increasing patient demands.

Another option

Meanwhile the digital chronic pain clinic Cellen, which has access to flower-based products, is said to be “working on solutions” with dispensaries to ensure supplies are consistent.

Clinical Associate Sarah Marten says the current issues are down to the amount of regulation importers are required to follow, which have been compounded by Brexit.

There have been a lot of issues getting products into the UK recently, caused by the amount of regulation importers are required to follow to get these medicines to patients,” she told Cannabis Health.

“It’s also my understanding that some changes in the working relationships with the European manufacturers and suppliers post-Brexit has made things more difficult.

Sarah also reports that patients have reached out to Cellen after struggling to get hold of these medicines from its competitors.

“We’re hearing stories of patients being left without their supply, and many are unaware that there’s another option,” she continued.

“At Cellen we think it is important that prescribers know what products are available and are working on a number of solutions with the dispensaries to ensure access to supply is consistent.

“As with any medication if it’s helping you to control your symptoms and it’s suddenly taken away, it can have repercussions. It’s vital that we make sure patients can get consistent access to their medications and we want to help wherever we can to get people these life-changing drugs.”

The very least patients deserve

Lyphe Group, which owns Dispensary Green, the pharmacy responsible for Sam’s prescription, is now piloting a new online ordering system which it says will provide “unparalleled levels of transparency”.

The digital system will allow patients to see exactly where their medicines are, from prescription to secure delivery, as well as itemising how much of each medicine is to be taken and how frequently. 

“Patients deserve transparency and an easy pathway to receive their medication once they have their prescription. After all they have been through it is the very least they deserve,” said managing director, Jonathan Nadler. 

The company, which has managed more than 75 imports from countries across the globe admits there has been “teething issues” with the industry, but expects things to improve quickly, as it now has access to all flower-based products on the official list of cannabis medicines. 

“Since the industry in the UK began, the supply of medical cannabis to patients has been fragmented. There have been issues around every corner with producers and regulators but Lyphe are the leaders in the space, we help the most patients in the UK get to this medicine as efficiently as possible,” he said.

“We have also been the leading supplier of products on a wholesale basis to other operators in the industry where they have been unable to procure products. We are laser-focused on constantly improving our services and moving the industry forward, and won’t stop until every patient, who needs it, has access to medical cannabis.

“Moving large volumes of legal cannabis across the globe is hugely complex. However, we have now managed more than 75 imports from countries like Israel, Australia, Canada, and a few EU member states.”

Lyphe is also expanding its patient support service team, which currently has 28 members, to meet demand.

“Our team is working around the clock to help thousands of patients every month – they are the heroes who are committed to overcoming daily adversity to help our patients through the process,” said Jonathan. 

“Sometimes patients will have to wait for their medication to arrive longer than expected. This is always out of our control and usually down to regulators responsible for export, however we fully appreciate the impact this has on patients and we work quickly to overcome these instances directly with the patient.

“As product supply improves – we have stock of every flower on the formulary – which it now has, these teething issues will fade away very quickly.”

PLEA added that any patients experiencing supply issues should contact their prescribing doctor who can assist in finding a suitable alternative medication.

 

*Sam’s name has been changed to protect her identity

 

 

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New research refutes ‘gateway drug’ fears over cannabis legalisation

Young adults consumed less alcohol, cigarettes and other substances following cannabis legalisation in Washington State.

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New research refutes cannabis as 'gateway drug' theory
Adult-use cannabis has been legal in Washington State since 2012

Young adults consume less alcohol, cigarettes and other substances following cannabis legalisation, according to a new study.

A paper published earlier this month by researchers at the University of Washington, found that young people consumed less alcohol, nicotine, and non-prescribed pain medication, after cannabis was legalised for adult-use. 

Researchers assessed trends in alcohol, nicotine, and non-prescribed pain reliever use among a cohort of over 12,500 young adults (ages 18 to 25) in Washington State following legalisation in 2012.

Contrary to concerns about the detrimental effects on wider society, according to the study, “the implementation of legalised non-medical cannabis coincided with decreases in alcohol and cigarette use and pain reliever misuse.”

The findings show that prevalence of alcohol use, heavy episodic drinking and cigarette use in the past month, as well as prevalence of past-year pain reliever misuse decreased. 

While the prevalence of substance use other than cannabis was “higher among occasional and frequent cannabis users compared to cannabis non-users”, associations between cannabis and pain reliever misuse and heavy episodic drinking “weakened over time”. 

However the team did find that the prevalence of past-month e-cigarette use had increased post-legalisation.

They concluded: “Our findings add to evidence that the legalisation of non-medical cannabis has not led to dramatic increases in the use of alcohol, cigarettes, and non-prescribed opioids.

“The findings indicate that the most critical public health concerns surrounding cannabis legalisation and the evolution of legalised cannabis markets may be specific to cannabis use and related consequences.”

Commenting on the study’s findings, NORML’s Deputy Director Paul Armentano said: “Real-world data from legalisation states disputes longstanding claims that cannabis is some sort of ‘gateway’ substance. In fact, in many instances, cannabis regulation is associated with the decreased use of other substances, including many prescription medications.”

Cannabis legalisation in the UK

Cannabis legalisation is a hot topic in the UK at the moment, following London Mayor Sadiq Khan’s fact-finding trip to LA last week. He subsequently announced that he would be launching a review panel to explore the possibility of decriminalisation in the UK. 

This has sparked debate among politicians, media personalities and the general public alike. 

While Home Secretary Priti Patel shared her thoughts that cannabis can “ruin communities, tear apart families and destroy lives”, Policing Minister Kit Malthouse described it as an “entry level drug”. 

And even Labour refused to get behind Khan, saying the party “does not support changing the law on drugs.”

But recent polling suggests the politicians may be out of touch with the public. YouGov polls show that more than half of Londoners support the mayor’s proposals. 

Meanwhile a poll last year revealed that 52 per cent of the population either ‘strongly supported’ or  ‘tended to support’ legalisation. 

 

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Medical cannabis in the mainstream – the top headlines this week

Get up to date on the week’s headlines.

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Medical cannabis in the mainstream - the top headlines this week

This week the media has been dominated with responses to Sadiq Khan’s controversial fact-finding mission to LA and plans for cannabis decriminalisation.

Although stories of police raids and cannabis farm busts continue to make up the majority of major cannabis headlines, the mainstream media is increasingly covering new developments in the cannabis space, from policy to patient stories.

Over the past few days, MPs have been responding to Sadiq Khan’s controversial trip to LA cultivators and dispensaries, while the Daily Express reported on a new study about a cannabis-based product aiming to treat chronic pain. Here are the week’s five top cannabis headlines not to miss.

The medical cannabis clinic banner

New study into cannabis for chronic pain

Daily Express spoke to the managing director of LVL Health, Tony Samios, about the company’s feasibility study which explores the effects of a cannabis-based product for chronic pain. The study will use cannabis flower in pre-filled cartridges and aims to build the data and evidence needed to improve patient access on the NHS.

Samios told the Express that the study is set to be a “game-changer in bridging the gap between evidence and making change using a rigorous scientific approach” providing “reliable data that is essentially missing”.

Sadiq Khan’s time would be “better spent focusing on knife and drug crime”, says Patel

Priti Patel made her thoughts on Sadiq Khan’s plan to consider cannabis legalisation in London clear in a Twitter post last week.

“Sadiq Khan’s time would be better spent focusing on knife and drug crime in London. The Mayor has no powers to legalise drugs. They ruin communities, tear apart families and destroy lives,” Patel said in the Tweet.

Her rebuke comes after Sadiq Khan’s recent trip to the US which included a fact-finding mission to LA to understand more about an international evidence-based approach to reducing drug-related harm in the capital. The London mayor also announced the launch of a new London Drugs Commission.

Policing Minister Kit Malthouse expressed a similar view to Patel. Last week he told The Sun: “I find it baffling that just last week, the Mayor of London thought it appropriate to stage a photoshoot in a cannabis farm in LA, to reiterate his support for the legalisation of this entry level drug. I profoundly wish he would focus on knife crime and violence taking place in the capital instead.”

Khan initially made his plans clear last year prior to his re-election, saying that he would consider decriminalising cannabis in the capital if he were to be voted in as mayor for a second term.

The Labour party’s response to Khan’s cannabis plan

The likes of Huffington Post, Daily Mail and iNews reported on the Labour party’s response to Sadiq Khan’s plans for cannabis law reform last week.

The party’s stance was made clear in a statement that stated: “Labour does not support changing the law on drugs. Drugs policy is not devolved to mayors and under Labour would continue to be set by national Government.”

HuffPost UK reported that a number of shadow cabinet members were “furious” at Khan’s comments, including Yvette Cooper. “Yvette is furious about it,” a Labour source told HuffPost UK. “People are just rolling their eyes because it definitely is not the official party line.”

Although it goes against his party’s official stance, Khan’s plan reflects data gathered by YouGov which has found that the majority of UK citizens are in support of cannabis legalisation.

Another source told the online outlet: “Sadiq has positioned himself as a progressive mayor on the side of the public prepared to take on the tough questions to genuinely tackle crime rather than pointless posturing that isn’t even popular anyway.”

Meanwhile, iNews reported that Labour MPs “let rip” in a private WhatsApp group. “This is going to go down like a bucket of cold sick in my bit of the suburbs just now… Crime up, police numbers still way below where people think they should be, so Labour is going to have a chat about drugs… Inspired,” said Gareth Thomas, the Shadow International Trade minister.

Not all Labour MPs have responded negatively, however. The Daily Mail reported on Shadow Cabinet minister Ed Miliband’s response to Khan’s plans. Although he highlighted that Khan did not reflect the Party’s position, he said Labour “welcome[s] Sadiq looking at these issues because this debate should carry on”.

“Cannabis ruins lives and legalising it won’t help”

In response to Sadiq Khan’s US visit, journalist and campaigner Louise Perry offered her opinion in an article for the London Evening Standard. While she said she would be “happy” to see possession of small amounts of cannabis made legal, but added that legalising the cannabis industry is “another matter entirely”.

The article is unlikely to sit well with cannabis campaigners and advocates thanks to its comparison between cannabis and tobacco, a focus on the dangers of psychosis and the lack of attention given to studies showing the positive effects of cannabis on health and wellbeing.

“Industries employ lobbyists to disguise the harmful effects of the products they sell,” Perry writes. “This has happened many times before.

“By the early 50s, the scientific evidence was clear: tobacco was killing people. And yet it would be 20 years until warning signs appeared on the side of cigarette packets sold in the UK. This tardiness was the result of lobbying by the tobacco industry, which opposed health authorities every step of the way.”

Patient faces dispute with council over housing

A man living in Norwich who holds a private cannabis prescription says he is facing difficulties finding a new place to live after being told by the city council to disclose his indoor cannabis use to landlords.

As reported by Norwich Evening News, Danny Wilson is prescribed legal cannabis by TMCC Medical Clinic for chronic pain, ADHD and anxiety. Wilson – who is currently on universal credit and personal independence payments due to his condition – pays between £700 and £1,000 per month for his medication.

Mr Wilson said: “I’ve repeatedly told them forcing me to go around approaching landlords and agents this way is causing me trauma but they ignored me.”

Despite never having being in prison, the city council offered him a place at House of Genesis, a rehoming initiative for ex-offenders.

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Medical cannabis in the mainstream – the UK’s top stories

All your cannabis news in one place

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There has been a mix of cannabis-related stories in the media over the past week. In case you missed them, we’ve compiled some of the headlines.

This week, news outlets such as The Guardian and The Telegraph have reported on UK medical cannabis labs, cannabis use for fibromyalgia and a rise in drug-driving cases amongst medical consumers.

Inside one of the UK’s first medical cannabis labs

The Guardian’s Julia Kollewe visited a growing lab owned by Celadon Pharmaceuticals, one of the first cultivation sites to be granted a home office licence to grow high-THC medical cannabis in the UK. The site is based in the West Midlands and grows cannabis predominantly for chronic pain. It is one of the only cannabis cultivators in the country to use an indoor lab rather than greenhouses.

According to The Guardian, Celadon is planning to ramp up production, aiming to grow 10 to 15 tonnes a year and supply up to 50,000 patients. At full capacity, the lab could generate £90m in annual revenues.

Founder James Short said: “I speak to patients on a regular basis who can’t work and are in terrible pain each day, that don’t want to be on opioids. Some are having to pay hundreds of pounds each month for medicinal cannabis. It really does work.”

US research programme studies cannabinoids in ovarian cancer

“Massive injustice” – medical cannabis patients facing driving offences

In a less positive story, The Telegraph reported that medicinal cannabis patients are increasingly being prosecuted for drug driving with arrests reportedly doubling in the last four years.

Those taking cannabis may face a positive result in police roadside testing up to 72 hours after taking the drug. Although studies have shown driving capabilities are not impaired after this length of time, patients still face prosecution.

Since 2016, arrests linked with drug driving have increased by 140 per cent, according to police figures obtained by The Telegraph.

But while medical cannabis patients are at risk of arrest, those taking opiate-based prescription drugs are permitted to drive even if they are over the lawful limit, provided they follow their doctor’s advice.

The Telegraph spoke to one patient, David Dancy, who was being prosecuted for drug driving despite the fact he had taken his prescription 12 hours prior to getting in his car. The 33-year-old said the prosecution is “a massive injustice”.

Fibromyalgia and arthritis patient on how cannabis changed her life

Andrea Wright, a medical cannabis patient from Bristol, spoke to The Guardian about her ongoing battle with psoriatic arthritis and fibromyalgia. The 39-year-old was diagnosed in 2016, suffering from constant pain and severe lack of sleep. She eventually was forced to leave her job due to her ill health.

“I had to stop work because the pain was too much. It’s been very depressing; I really enjoyed my job. I tried so many different therapies and managed to get my arthritis under control but for fibromyalgia, there isn’t anything, no magical pill,” Wright told The Guardian.

After trying medical cannabis as part of a study run by LVL Health, she found she was able to get her first “proper night’s sleep” since 2012. She is now back at work and now aiming to reduce her reliance on opioid painkillers.

300 campaigners march through streets of Cardiff

Campaigners calling for the legalisation of cannabis in the UK marched through Cardiff city centre this weekend, WalesOnline reported on Saturday (7 May).  This was the first protest to take place in Wales since before the pandemic.

The march was organised by Terry Wakefield, who has been involved in cannabis campaigning since 1999. She told WalesOnline that the stigma surrounding cannabis was pushing the trade further underground.

“Cannabis is my medicine. I suffer complex PTSD and this march might sometimes be the only time I’m outside,” she said. “If I was in a position where I could go to my GP and ask for a prescription I would do.

“If we are able to consume cannabis in the UK then we should have a right to grow our own. The more this stays illegal the more it will be pushed underground and the more gangs and slaves in Britain.”

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