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.”
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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Guernsey patients fear additional fees may leave medical cannabis out of reach
A new import fee for Guernsey patients has been described as a “kick in the teeth”.
A new import fee for Guernsey patients, who access medical cannabis products from UK pharmacies, has been described as a “kick in the teeth” for those already struggling to fund private prescriptions.
Patients may be forced to reduce their medical cannabis prescriptions to accommodate a new import fee, coming into place from January.
The requirement is expected to come into force in early 2022, and will be used to help cover the costs of issuing licenses, officials said.
As in the UK, the law in Guernsey permits doctors to prescribe unlicensed cannabis medicines privately. As these are not included on the state’s ‘White List’ of medicines they must be funded by the individual.
But patients have told Cannabis Health that the additional costs facing those who already pay hundreds each month for private prescriptions, could prevent them accessing cannabis-based medicines altogether.
Rick Park, who has been prescribed cannabis for six months for chronic back pain, is already having to reduce his prescription due to unsustainable costs.
“I’m currently paying £310 per month for my prescription. I am reducing the amount of medical cannabis I receive next month as I can’t afford to continue paying this amount on a monthly basis,” he said.
“The extra £25 monthly import fee means I may have to reduce my medical cannabis even more. Any further increases could potentially put access to medical cannabis beyond my reach.”
Medical cannabis was legalised on the island in 2019, but due to a lack of prescribing doctors, patients had no choice but to access it through clinicians in the mainland UK.
Guernsey’s first medical cannabis clinic, Medicann, opened its doors in September 2021, having been operating in Jersey for over a year.
It now has around 500 patients enrolled in Guernsey and 3,000 across both islands, many of whom have moved from UK clinics.
However, Park said moving clinics would mean him paying around more for his medicine than he is currently.
“I had a consultation locally, but their focus is on bringing ‘premium’ products to the island. Unfortunately, this also comes with a premium price tag,” he continued.
“According to the doctor I saw, if I continued my prescription with them I would be paying more than I am through the UK clinic.”
Gaz Barbe is one of many patients who has recently moved clinics to Medicann, where he receives medication for PTSD.
He says that while he no longer has to deal with import delays and issues with repeat prescriptions, it’s not “cost-effective” for everyone.
“The majority of people that I know on medicinal cannabis have moved to the local clinic,” he said.
“But for a friend of mine it’s not cost effective for him to move to Guernsey given his prescription, I think that should be respected.”
Gaz’s family currently pays for his prescription, as he is unable to work due to his health. Without their support, he says, he wouldn’t have access to it.
“I cannot afford my medication, it costs between £300 to £370 every month, which is more than I get a week, including paying my rent,” he said.
“If it wasn’t for my family I would not be medicating and I would not be doing so well.”
Gaz would like to see cannabis medicines included on the country’s White List, or for patients to be permitted to grow their own cannabis for medical use.
“I personally know of around 20 people that are not able to get their medication and have stayed using the illegal market,” he said.
“These are people who are prescription worthy who just can’t afford it. It just seems like absolute madness.”
Adam Martel who runs a Facebook support group for medical cannabis patients in Guernsey, said although the import fee wasn’t a surprise, it was a “kick in the teeth” for patients.
“We were advised back in October that the charge would come into effect by November – this has now been pushed back to Jan 2022.
“It’s another kick in the teeth so to speak, for patients who already have to privately fund their medical cannabis prescriptions,” he told Cannabis Health.
“Many patients have welcomed the local clinics and some will not incur the import license charge if switched, but it can hit patients either way, if staying with the UK or moving to local clinics.
“Switching to local means limited access to some of the available products and ranges. One of the flower ranges also costs more locally than via a UK clinic. But if you stay with a UK clinic, you now have to absorb additional costs.”
Gary Whipp CEO of Medicann told Cannabis Health that the costs of all its products are on a par with those in the UK.
“It all depends what product a patient is on and how they get it and where they get it from, but we get our products direct from our producer and sell it for the same price as they do in the UK,” he said
“We are always trying to drive down the price to pass that on to the patient. We are bringing in lots of different medications and strains and prices are coming down. We’re also talking about whether our prescriptions should be eligible for payment from the Government like any other that’s written by a GP.”
Mr Whipp added: “The costs of running a clinic in Jersey and Guernsey are not cheap, doctors are not cheap and pharmacy dispensing is not cheap, but we are doing our best to get the best possible product at the right price. And actually, what we find is that the majority of people say they’d rather deal with a local clinic.”
Cannabis Health has contacted the Health and Social Care Committee for comment.
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