Medical cannabis patients spoke about the barriers preventing people from accessing a legal prescription, to kick off Medical Cannabis Awareness Week.
Led by the patient advocacy group, PLEA (Patient-Led Engagement for Access), Medical Cannabis Awareness Week takes place from 1-7 November to mark three years since the legalisation of medical cannabis in 2018.
It brings together patients, doctors, supporters and stakeholders across the sector to raise awareness of the plea for fair access to medical cannabis. Three years on still only three NHS prescriptions have been issued.
In the first event of the week, patients and members of PLEA, highlighted the myriad of barriers preventing others from accessing a prescription.
Patients and stigma
As well as the obvious cost of private healthcare, they revealed the lack of awareness of medical cannabis among doctors and other authorities and the stigma still experienced by many patients.
Charlotte Finn, who has fibromyalgia, has been able to come off opioid medication and no longer needs to use a wheelchair thanks to her cannabis prescription.
But she revealed that doctors “had no idea” what she was talking about when she told them she was thinking of accessing a prescription.
“It’s not widely known among GPs and NHS consultants, everyone who I have spoken to about it has had no idea about the private clinics or Project Twenty21,” she said.
Charlotte also admitted that she had experienced stigma from friends and family and has had to convince them of the benefits of medical cannabis.
“I’ve had people not want to be my friend anymore because I’ve opened up about my medication,” she added.
“I’ve had to convince my family of its benefits and that it was going to help me and obviously now that they’ve seen the effects and how much better I’ve been, they’re all on board but until then there was a feeling that I was doing something wrong.”
Noel Brown, 50, a patient with Parkinson’s disease, spoke about the added stigma facing black male patients.
“As a black male stop and search is really prevalent, especially in the Midlands, he said. “Unless you really know your rights and can prove why you are carrying it, it can be quite precarious. We get searched weekly by the police. There is definitely a stereotype.”
Meanwhile, as a young patient, 21-year-old Lex Wolfe, said people often held misconceptions about why they used cannabis.
“A lot of people don’t believe me when I say I’m a patient and that I’m using it for medical reasons. A lot of the time people just think I’d like to get high. I don’t see as many older patients getting those same issues,” they said.
Lex also highlighted the less talked about barriers facing the LGBT community. While transgender and non-gender-conforming patients could stand to benefit greatly from a medical cannabis prescription, many are put off by the potential knock-on effects and the consequences of telling their clinicians.
“I know plenty of trans people that would qualify for a private prescription, but one of the main ways reasons they’ve not gone out and accessed one is because nobody can tell you how that will affect a medical transition if you’re planning on gender reassignment surgery or even HRT in the future,” said Lex. “The whole trans healthcare thing is a different discussion. Trans people spend years being in pain or having severe anxiety that could be fixed with a prescription that people are not getting.”
Abby Hughes, chair of PLEA and hosting the panel blamed this stigma on a “lack of education” and an “unfair system”.
“Another one of the barriers is that people don’t know that they can get a prescription. They don’t know that the law has changed,” she said.
“It’s not just patients who don’t know that, it’s the doctors. There’s a real lack of education around the endocannabinoid system.”
“Unsustainable” costs for patients
A poll of those attending the event found that more than half (56 per cent) of those who don’t already have a prescription said this was due to the ongoing cost being “unsustainable”.
However, David McKenzie, a patient living with multiple sclerosis (MS), highlighted that the costs are coming down gradually, as the industry grows.
There are now thought to be upwards of 7,000 patients with a legal prescription in the UK.
“The more people who get a prescription, the lower the costs will become. I am by no means privileged or rich but I just prioritise paying for my meds because I know how profoundly life-changing having a prescription is.”
So, where will we be in another three years?
David feels positive about the future and believes things are improving for patients.
“My experience from my first prescription to now is that things are definitely improving and I can only see that getting better going forward,” he said.
Abby also thinks we’ll have seen progress with NHS registries by then, more case studies being published and hopefully real-world evidence being considered by regulators.
While Noel would like to see more awareness to overcome stigma, as we’ve seen with mental health throughout the pandemic.
“Just like in the last two years there has been a push for awareness to tackle the stigma of living with mental health issues, I’d like to see the same movement when it comes to medical cannabis,” he added.
“I want to see documentaries, people talking about it and having thought-provoking conversations and maybe then the stigma will dissipate.”
Europe’s largest patient registry expands to offer more affordable access
The Sapphire Access Scheme has expanded to reach an additional 2,000 patients across the UK.
Published patient data within The UK Medical Cannabis Registry suggests positive changes were observed in pain, anxiety and sleep-specific health-related outcomes.
The Sapphire Access Scheme allows patients to be included for free in the UK Medical Cannabis Registry (“The Registry”) and receive £50 appointments. The Registry is the first such database in the UK and was set up by Sapphire Medical Clinics (“Sapphire Clinics”), the UK’s first and highest-rated medical cannabis clinic.
It includes over 3,000 patients as part of the Sapphire Access Scheme and an analysis of the clinical outcomes measured in patients in the UK with chronic pain has been published in the international peer-reviewed journal ‘Expert Review of Clinical Pharmacology’.
The results from this study of 190 patients suggest that treatment with cannabis-based medicinal products (CBMPs) has an acceptable safety profile and is associated with improved pain-specific outcomes and health-related quality of life at 1, 3 and 6 months following treatment initiation. Adverse events (side effects) were reported by 18.7 per cent of patients suggesting a favourable tolerance relative to medications, such as opioids, that are prescribed more frequently.
Sapphire Access Scheme
To mark the success of the Real-World Evidence published internationally, the Sapphire Access Scheme has expanded to an additional 2,000 patients across the UK. Eligible patients will benefit from significant cost savings, including initial appointments priced at £50, in recognition of their contribution to the groundbreaking initiative that is successful in rapidly expanding the evidence base for medical cannabis.
The Registry is the largest European database of its kind and captures patient outcomes as well as safety profiles of medical cannabis. Medical cannabis can be prescribed by specialist doctors when conventional therapy has not provided adequate symptom relief for conditions such as pain, anxiety, and insomnia. All patients enrolled in the Registry have access to individualised health metrics and can freely monitor treatment progress over time.
Dr Simon Erridge, head of research and access at Sapphire Clinics commented “As a multi-award-winning medical cannabis clinic, we are delighted to further improve access to this treatment option where other therapies haven’t worked. By collecting patient-reported outcomes and producing peer-reviewed analysis in return, together we inform the wider evidence base of the efficacy and safety of medical cannabis, which is essential for ensuring the correct patients are able to access treatment.”
Sapphire Medical Clinics patient Jack Pierce, added: “I am eligible for treatment as I previously had tried standard therapies for a range of multiple mental health conditions, consisting of Anxiety, Depression, ASD (Autism) and ADHD. The Sapphire Access Scheme has allowed me to see a specialist consultant and be prescribed medicines based on my individual needs. I have access to all health metrics such as sleep scores, daily activities and quality of life for free so that I benefit from this scheme as well as contribute to the evidence base which is accelerating in the UK, three years since the change in the law.”
Who is eligible for £50 appointments?
All patients eligible for treatment with medical cannabis can enrol on the Sapphire Access Scheme and access the £50 appointments. Medical cannabis can be considered when first-line treatments have not achieved adequate benefit or produced side effects. Find out more and complete the eligibility assessment online: https://www.sapphireclinics.com/eligibility-assessment/
Sapphire Access Scheme Pricing
£50 – Initial Appointment
£50 – Monthly one follow-up appointment
£50 – Quarterly check-up appointment
£50 – Transfer patient appointment
£0 – No repeat prescription fees
Find out more about the Sapphire Access Scheme and pricing: https://www.sapphireclinics.com/pricing/
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Medical cannabis campaigners share anger at reading of new bill in parliament
“This is simply unforgivable. What a smack in the face this is for our families and at Christmas too. So once again, we get warm words, but no solution.”
Campaigners have reacted in anger, despair and frustration to the second reading of a bill in parliament designed to increase access to medical cannabis.
Politicians from different parties shared in parliament their concerns and the stories of medical cannabis patients in their constituencies. Some of the issues raised included the cost of medical cannabis, the lack of doctors who can prescribe, no support for patients and families. The politicians shared the health benefits experienced by the patients themselves.
Response to parliamentary reading
Speaking with Cannabis Health News, campaigner and mother of Alfie Dingley, Hannah Deacon commented:
“It is terribly depressing that even though the government is aware of all the issues that are deeply affecting patients, where they have no choice but be faced with large bills for cannabis medication which keeps them or their children well, they still do not give the time or thought to how they could help improve things for these very chronically ill patients.
“This bill went some way to try to improve access to medical cannabis in the U.K. and we thank Jeff Smith MP for bud continued support. Why does the government blatantly continue to prolong the suffering of so many.”
Medical cannabis campaign group, End Our Pain highlighted that ‘it seems that the government is refusing to support and will instead ‘talk out’ the bill.”
Peter Carroll, director of End Our Pain said: “This Bill may not have been perfect. But it is a genuine attempt to unlock a problem that is causing unbearable anxiety and stress to some of the most vulnerable families in the country. After the law change of 1 November 2018, which saw access under prescriptions legalised, the hopes of these families have been raised and subsequently dashed. They have been passed from pillar to post and systematically let down.
“A succession of Ministers have expressed their interest and concern. There have been reviews, debates and motions. But these families continue to suffer. They need help right now. Our question to the Government and Ministers is this – if this Bill is not the answer, what is?
“To simply talk this Bill out without offering an alternative solution is cynical and cruel. This is a solvable problem. At the very least, these families need some sort of emergency compassionate fund to help pay for the private prescriptions until the underlying problems with NHS prescribing can be addressed.”
Moving heaven and earth on continued medical cannabis access because they acknowledge it is dangerous to stop it, but still no financial help or NHS access after years of safe effective use of cannabis oils. Private access only is a two tier unfair system. @End_Our_Pain https://t.co/sRpcfIi11C
— Boisterous Ben (@BenBoisterous) December 9, 2021
Joanne Griffiths, whose story was shared in parliament by MP Katherine Fletcher, said: “This is simply unforgivable. What a smack in the face this is for our families and at Christmas too. So once again, we get warm words, but no solution.
“Every month is hard to bear for us as we fight to find the money to pay for this medicine. The sums of money to solve this are tiny. All that is needed is the political will to solve it.”
Katherine Fletcher raised in parliament how Joanne’s son Ben is still denied an NHS prescription leaving the family to fundraise to meet the costs of his private medication. She highlighted that they were ‘on the verge of being broken’ due to the financial stress along with COVID and trying to run a business at the same time.
Speaking with Cannabis Health News, Joanne explained her disappointment at the lack of contact she has had with the MP despite what was said in parliament.
“I feel that my seriously disabled son and myself were used to talk out a Bill that may help him and others like him.
Our local MP Katherine Fletcher was asked by Seema Kennedy her conservative predecessor to help our son and to date since 2019 we have had a 15-minute conversation in a pub and one letter regarding Brexit, she has ignored us constantly until this Bill. I really thought she wanted to help us when she said she would attend, but she has completely let us down again and followed the party line.
If Katherine has admiration for me as she stated, then she would fight for a compassionate fund for children that have been deemed as being exceptional by specialists and now receive the cannabis medications keeping them well and who have had an exceptional response and need where all else has failed.”
The bill, proposed by Jeff Smith, Labour MP for Manchester Withington in June 2021, aims to remove some of the barriers by allowing the expansion of GPs ability to prescribe unlicensed cannabis medical products.
The GPs would be on a register maintained by the General Medical Council. GPs in the UK can prescribe as part of a shared care arrangement, under the direction of a specialist consultant.
It would also aim to establish a Commission for the assessment of cannabis-based medicinal products.
Speaking in Parliament today, Jeff Smith highlighted that there are many patients who would benefit from the bill. He also raised the issue of forcing parents to fundraise for their medication. He raised the issues faced by different patients with epilepsy and Ehlers-Danlos syndrome.
“Ministers appreciate the problem and want to try and find a way around it. The problem is that medical cannabis based medical products are a very helpful and effective treatment for a number of medical conditions. But significant numbers of people who would benefit from being prescribed medical cannabis on the NHS aren’t able to get the prescriptions that they need.
So when I was drawn for the private member’s bill, I wanted to try and find a legislative way to address this problem,” he said.
He added: “My modest proposals today try to find a way to help overcome the barriers. It’s not a magic bullet and it won’t resolve all problems, but it might in due course help to help some patients get the medicine that they need.”
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