Recent surveys have highlighted that many patients in the UK are still accessing medication through the legacy market, despite cannabis being legally available on prescription since 2018.
Cannabis Health explores why.
On the surface it appears to be a burgeoning industry. With more than 20,000 patients estimated to have legal prescriptions for cannabis in the UK, in the past four years the market has grown exponentially.
But despite the number of private clinics operating now well into double figures, there’s an undercurrent of dissatisfaction running through the patient communities.
A recent YouGov poll, commissioned by Sapphire Clinics, suggests that approximately 1.8 million people with diagnosed medical conditions are still turning to illegally obtained cannabis to manage their illness. If the data is to be believed, this number has increased by around 400,000 since 2019, when a comparable report showed the figure to be around 1.4 million.
This is partly due to the lack of awareness around the legality of medical cannabis in the UK.
A recent survey of 4,000 people found that more than half of Brits were unaware they could access cannabis on prescription.
Sapphire Clinics also found a lack of awareness and the perceived difficulty of accessing legal cannabis products were key reasons for patients not having a prescription, with a quarter unaware that cannabis could be legally prescribed, while two-fifths were under the impression it would be too difficult to access.
Many patients, however, are aware that it’s legal yet are still accessing their medication via the legacy (or illicit) market, either out of choice or necessity.
Cannabis Health asked patients in this position about their experiences. We have chosen to keep their comments anonymous to protect their identities.
Despite product prices coming down in the private market and a number of access schemes designed to make things more affordable, patients still say cost is a huge factor for them.
Many who rely on cannabis medicine are chronically ill and unable to work. Figures from the PLEA (Patient-Led Engagement for Access) patient survey showed that 59% of patients are using benefits to fund their prescription, with more than a third spending over £350 a month.
Particularly amid a cost-of-living crisis some simply cannot afford the monthly payments.
“When you have just over £800 a month to do everything and your energy bills alone are more than £200 you exist on scraps,” said one patient.
“How does one afford a prescription on top of such a low income? Last time I applied for assistance from an access scheme they wanted to know every single penny I spent… The whole thing is hostile to those that cannot afford to be well from the outset.”
A cancer patient told us that they had been in touch with a clinic in the Netherlands, which had offered to provide them with oil for free after hearing their story.
“It would be illegal here, but in the current financial situation and with my serious ill-health I’m past caring if I’m breaking laws,” they said.
“I’ve received my oil at no cost due to the kindness of a clinic owner. I just can’t afford a legal private prescription, yet it’s literally saving my life.”
Other issues were the additional costs such as consultations and repeat prescription fees, and delays to receiving medication after having paid for it. And while it’s not an option for everyone, others say that growing their own medication can be considerably cheaper.
As one person put it: “Why should I pay for something I can grow myself for a quarter of the cost and of far better quality?”
Quality, choice and consistency
Quality, lack of choice and unreliability cropped up time and again in relation to the legal market, with many patients saying they have had better quality products and more choice from their local dealer.
Stock and quality control issues, which have been described as ‘teething problems’ by some, are now widely acknowledged by those in the industry.
Two-thirds (62%) of participants in the PLEA survey said they had had ‘unreasonable’ delays to their prescription and 31% had experienced quality control issues, such as receiving a damaged or contaminated product.
Speaking at the recent Medical Cannabis Patient Conference in London, Kirsty Morrison, head of relationships at Cancard, said the organisation has received a number of reports of quality control issues such as mould and powdery mildew.
“In terms of prescription flower, from what I hear and see, the quality is just not there,” she said.
“Unfortunately, that means that quite often people will go back to the illicit market to source their medicine, which as far as I’m concerned is just not good enough.”
Others have no choice but to go to the illicit market or cease cannabis treatment all together, as the products that worked for them are no longer available.
As of 2023, Celixir20 will no longer be permitted for importation due to a change in MHRA regulations. As well as children who are prescribed this for severe epilepsy, many adult patients have had their supply cut off.
There’s also a risk that a patient ends up being prescribed a strain that doesn’t suit them and is then ‘stuck with it’ until they can get another appointment with their doctor.
These factors may explain why some choose to combine their legal prescription with legacy cannabis, which serves as a ‘backup’ when products are out of stock or there are delays with their prescription.
According to one patient: “My experience increasingly is that it’s impossible to maintain a steady supply, so there’s always a backup needed.”
A former participant of Project Twenty21, an observational study on the safety and efficacy of medical cannabis which subsidises the cost of prescriptions, said they were willing to pay the £300 a month despite it being ‘all I could spare as a disabled person’.
However, they found it wasn’t as effective as the cannabis they had been sourcing illicitly and disliked the fact that the products had been irradiated and imported from overseas.
This, combined with the ‘low stock levels’ and ‘weeks of waiting’ for medication, convinced them to take a different route.
“I researched the NOIDECS library for my prescription seeds and bulk-purchased them for an entire year, saving money by growing my own medical supply,” they said.
“Not only is it cheaper, it’s far more effective. I know what I’ve grown and fed my plants, and my stock levels aren’t an issue.”
Lack of trust in the system
After decades being subject to criminalisation and stigma for accessing their medicine, some patients simply don’t trust the legal system and those operating within it.
“Anything less than decriminalisation is a compromise. Trust is the one thing you cannot buy,” said one patient.
“It’s too late, too much damage has been done to trust this government.”
Another added: “These companies have secured the market for themselves and a patient’s only choice for legal cannabis is through them. If you use cannabis outside of this system, you risk being made a criminal… This is legal extortion.”
Others feel that medical professionals lack the knowledge and training in cannabis and how it works in the body, with the endocannabinoid system still not widely taught in medical schools and no legally required training before they begin to prescribe.
The fact that patients need to have tried two conventional therapies without success before they can be legally prescribed cannabis also puts people off.
A patient with a mental health condition said: “You have to poison yourself with two other things first… my medicine is working and my GP says [to] continue what’s working, so I’d have to stop [in order] to show symptoms and you know where that could lead.”
Some patients just feel the systems are not in place to support or protect patients.
“I think the general consensus is due to inadequate systems, policies, procedures and products in place with no protection at all from criminals or the police,” said one response.
“I don’t think people are choosing one market over another, I think people are choosing discretion, reliability and the easiest route to access. How can we have faith, let alone confidence in a system, and professionals that don’t even acknowledge how the human body functions?”
Cannabis scientist Dr Callie Seaman, who has worked in the hydroponics industry for over 20 years and is an epilepsy patient herself, says patients want trust and consistency when it comes to their medication.
“It can be a trust issue and a matter of having a reliable source,” she comments.
“A lot of people go to the legacy market because generally they will know the person who is cultivating for them and often will have seen the plants being grown, so they know they are going to get the same cultivars each time. Or if they are growing their own, then they know exactly how it’s grown.”
She adds: “I also think many feel that [the legacy market] is a little bit more reliable at this point in time. The UK market is still in its infancy, particularly when it comes to flower, and the legacy market may offer more choice.”
Many patients choose to pursue a legal prescription for the ‘legitimacy’ that it brings. A prescription should carry less stigma and be taken seriously as a medication.
However, figures show that patients with a prescription continue to experience stigma from society, including from medical professionals and elsewhere in the community.
Over 80% of patients prescribed cannabis at Sapphire Medical Clinics said they had been subject to stigma, with only 77% feeling comfortable telling family, and 61% telling medical professionals.
The PLEA survey also showed that only 50% of patients were permitted to consume their prescription at work by their employer.
As an organisation, Cancard regularly hears from patients who have been subject to stigma and discrimination, and carries out training among police forces and other third parties, many of which seem to be still unaware that medical cannabis is legal.
“Even people who obtain legal prescriptions for cannabis still face stigma in society when living their lives, and this is something the industry, police and private sectors need to take seriously,” said Kirsty Morrison.
“People should be able to enjoy their usual activities and not have to worry about taking their medicine while out and about.”
However, figures from a recent freedom of information request show that medical cannabis prescriptions in January 2022 reached their highest level on record, six times those seen in January 2021, suggesting that many are taking the legal route.
There are a range of situations where a prescription can offer invaluable protection, particularly around consumption in public, driving, or for those who have young families.
While adult-use cannabis remains prohibited in the UK, a prescription may be the safest route for many.
Stephen Cutter, head of legal services at Release, which campaigns for the decriminalisation of possession of all drugs, explains: “There’s protection offered to patients when using prescribed products. Your possession of prescribed cannabis is lawful, which removes one of the most common offences that impacts those sourcing from the illegal market.
“Cautions and convictions for drug possession can come up in a range of situations like employment, applying for visas, or adoption plans. It may also provide a defence to the ‘drug driving’ offence, where very low levels of THC in the blood can result in driving bans.
“Prescribed cannabis should also carry less stigma. Through our helpline we know that parents’ cannabis use, whether medicinal or not, can be used as a basis for assuming a child may be at risk, which can cause terrible stress on families. Lawfully prescribed medication may give you protection against discrimination in a variety of situations, like housing or employment.”
Mr Cutter added: “Release campaigns for the decriminalisation of the possession and use of all drugs; we published this year a report into the principles that should exist in a regulated cannabis market. Unfortunately, Government proposals are currently threatening to head in the opposite direction.
“In the absence of decriminalisation or the alternative regulation, we advocate for genuine and helpful protections for people accessing prescribed cannabis.”
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