Five takeaways from the UK’s first cannabis patient conference

The UK’s first cannabis patient conference took place last week with many important conversations had throughout the day. We’ve broken down some of the key points here. 

Patients, prescribers, advocates and industry professionals came together at ISH Venues in London on Friday 4 November for the UK’s first conference dedicated to those benefiting from medical cannabis.

The event, which was hosted by Drug Science and Medcan Support, took place as part of Medical Cannabis Awareness Week and presented a rare opportunity for patients and industry to communicate directly with one another.

Patients were given a platform to share their personal journeys, as well as their perspectives on the current landscape. And after an initial reluctance due to health and safety concerns, the venue provided a designated outdoor vaping area to allow patients to consume their medication on site.

Here’s what was said on the day.

The quality of prescriptions is not up to scratch 

Patients have made it clear they do not feel the quality of products they are getting on prescription are of the same standard to what they can access illicitly.

In the first discussion of the day, Prescription vs Legacy Cannabis, several members of the panel highlighted the issues they have experienced with their own or their child’s prescription. 

Kirsty Morrison, head of relationships at Cancard, revealed that the organisation has received a number of reports of quality control issues such as mould, mildew and bud rot.

“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.”

Clark French, an MS patient who went down the legal route when he had children in order to protect himself from risk of prosecution, commented: “The quality in the legacy market is vastly superior to anything I have had on prescription…but the legal protection is priceless.”

(From left) Emily Carkeet, Dr Sunil Arora, Alexandra Carstea and Kirsty Morrison at the UK patient conference

Families have been forgotten

While some patients may be returning to the legacy market, for others that is not an option. Emily Carkeet, whose daughter Clover has treatment-resistant epilepsy, highlighted that despite the myriad of issues facing parents and carers it would always be preferable to have a prescription.

“As a parent, giving anything to my child that is not prescribed, is not an option,” she said.

But despite the thousands that these families are paying each month for their children’s medicine, they get little support, according to Emily, and are often forced to turn to other parents for advice on key aspects of cannabis medicines such as dosing.

She added: “We pay £1,300 a month to get Clover’s medicine and we get no support, I have to go to other parents for help with dosing. We are not getting our money’s worth. All a prescription is doing is keeping us out of jail.”

Prescribing cannabis is ‘always a collaboration’

During the discussions several doctors alluded to the knowledge that they have garnered from their patients during the process of prescribing cannabis.

Dr Niraj Singh, a psychiatrist who took part in the Clinicians’ Perspectives panel, said the relationship between a prescriber and their patient should be a ‘synergy’, adding that his experience of prescribing cannabis so far had been ‘humbling’.

“Cannabis medicine is about synergy,” said Dr Singh.

“Patients that I see are often experts by experience, they know more about the different strains than I do. It has been a humbling experience and a privilege to see the benefits.”

Sophie Hayes, a registered nurse, formerly of Integro Clinics, who is now clinical trial manager for LVL Health, echoed these thoughts, adding: “It’s a relationship between you and your doctor and it’s trusting that no one knows everything, it’s always a collaborative effort.”

(From left) Host Mary Biles, Dr Niraj Singh and Katya Kowalski at the UK cannabis patient conference

‘We need more activism’

Not for the first time, Professor Mike Barnes, chair of the Cannabis Industry Council and the Medical Cannabis Clinicians Society, challenged the British Paediatric Neurology Association (BPNA) to explain publicly why they remain so averse to the prescribing of cannabis to children with epilepsy.

Following a screening of the documentary Anything Can Happen, Professor Barnes and Hannah Deacon co-hosted a Q&A with Dr Jen Anderson, her daughter Sidney Anderson and director Chase Gouthro.

Professor Barnes then shared his own family’s experience, opening up about his sister who suffered from severe epilepsy and cerebral palsy. He went on to say that he thinks we need ‘more activism’ in the UK to force the paediatric neurology community to prescribe in these exceptional cases. 

“The paediatric neurology community are against this for reasons that I simply do not understand. They are not going to listen to any intellectual argument,” he commented.

“We ought to do much more activism… we ought to sit in the office of a paediatric neurologist until they agree to prescribe cannabis, because these people are not going to move until something dramatic happens. It shouldn’t be necessary, but unfortunately it is.”

(From left) Dr Jen Anderson, Sidney Anderson, Chase Gouthro, Prof Mike Barnes and Hannah Deacon at the UK’s cannabis patient conference

Patients and prescribers want more choice  

There was also discussion around the types of products which are currently available on the UK market, with both patients and prescribers suggesting that they would like more choice. 

Dr Dani Gordon, who was an experienced prescriber of cannabis in Canada before moving to the UK, said she found it ‘frustrating’ that delivery methods such as topicals and suppositories were not yet available here.

“We don’t have the choice here that we had in Canada in terms of what products are available to prescribe and that’s the biggest frustration for me when I have a patient in front of me,” she said. 

“That’s why sometimes patients end up going back to the illicit market.”

Meanwhile, Dr Callie Seaman, a cannabis scientist and epilepsy patient, posited the idea that cannabis flower – the most commonly prescribed product in the UK – should be made available through dispensaries, as has happened in other jurisdictions.

“Flower is a medicine, but it’s not a pharmaceutical,” she said.

“We should remove the flower from prescription and make it available for everyone through ‘cannabis specialists’… at the moment we are trying to fit a square peg in a round hole.”

Dr Mark Smith agreed that clinicians would welcome more ‘conventional’ products for patients who may be wary of vaping flower. 

He added: “If cannabis is going to go mainstream you have got to have products which look more like conventional medicines, to meet the needs of those patients who don’t want to consume via vaporiser, for example.”

(From left) Host Anuj Desai, Arjun Rajyagor, Matt Hughes, Rosie Vaz, Dr Matt Smith and Dr Callie Seaman

Final thoughts

Matt Hughes, co-founder of Medcan Support, said that despite the challenges discussed on the day, the event was a success in bringing patients and industry together.

“It was really positive for both patients and industry to have the opportunity to directly talk to one another and work together to bring forward access,” he commented.

“There were a number of issues highlighted on the day, including the lack of support for families. Families were at the forefront of campaigning in 2018, we were prescribed cannabis through independent pharmacies before any cannabis clinics even existed. Now the sector has moved on there are over 100 clinicians prescribing and 20,000 adult patients compared to 50 children. We feel abandoned and forgotten about.”

He added: “As an event there are lots of things that we have learned along the way, but this is the start of something new and we will continue to give patients the opportunity to have their voices heard in the years to come.”

(From left) host Mary Biles, Claire Bywalec, Julie Digs, Mohammad Wasway, Jane Hinchliffe

Drug Science echoed the intention to make the event a staple of Medical Cannabis Awareness Week.

Mags Houston, head of projects and communications, said: “I have been really touched by the feedback I have received about last week’s conference. It wasn’t an easy event to put on and there were moments along the way where we thought the rug was going to get pulled from under our feet, but we did it.

“It was a really important day for the industry but especially for patients. Every one of the five panels had patients represented, with the final panel consisting of five patients speaking of their lived experience as UK medical cannabis patients. It is a first for the UK, and hopefully the first of many, as we aim to return for Medical Cannabis Awareness Week next year. 

“I want to say a huge thank you to everyone who came along, both in-person and online, and to sponsors, without whom it wouldn’t have happened. We truly demonstrated the power of coming together as a community – that’s how we can make change happen.”

All of the panel discussions were recorded and will be put up on the Drug Science YouTube channel to watch for free in the coming weeks.

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