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

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