The Prime Minister appeared to be “out of touch” when asked by MPs about medical cannabis prescriptions for children with epilepsy, despite promising to help ease the burden.
Boris Johnson was quizzed this week on the action his Government was planning to take to ease the burden on families forking out thousands a month for medical cannabis prescriptions.
He appeared to look baffled when Labour MP Tonia Antoniazzi asked what he would do to help these children on Tuesday 7 September.
Ms Antoniazzi, who has been a prominent advocate for medical cannabis, asked whether he would deliver on a Government promise to immediately set up a fund to pay for the prescriptions for medical cannabis for children with intractable epilepsy.
But in response, Mr Johnson claimed that the prescriptions are “already provided for on the basis of clinical advice”, sparking outrage among campaigners.
Since the law changed to legalise medical cannabis in 2018 only three prescriptions have been issued on the NHS.
The system has left families funding up to £2,000 a month for the medicines which in many cases have transformed their children’s lives.
The probe from Ms Antoniazzi came after Liberal Democrat MP for Edinburgh West, Christine Jardine, secured a debate in the House of Commons on Monday 6 September, to press the Government on how they plan to ease this burden.
Ms Jardine, whose constituent 10-year-old Murray Gray has been seizure free for two years thanks medical cannabis, said: “Medicinal Cannabis has transformed his life. When his mum Karen first came to see me, he was a very, very unwell wee boy who was… constantly in and out of hospital with dozens of seizures a day and his family were worried they could lose him.
“Now since being prescribed cannabis oil, he is seizure free and a happy youngster who plays football with his dad.
“This medication has given him a life he may not otherwise have had.”
I secured a debate to press the Government to ease the intense burden on families who are being forced to spend thousands of pounds each month on essential medical cannabis for their children. I hope the Government will now act. pic.twitter.com/CwRXba5u2E
— Christine Jardine (@cajardineMP) September 7, 2021
She added: “I believe it’s time that the Health Secretary and his team intervene to make that case that the medical profession should get the shoulder behind the veil. It’s time to close the huge gulf between what the government promised, and I believe wanted and what has actually been delivered.”
After watching the Prime Minister’s response on Wednesday, campaigners have described him as “out of touch” and “lacking in empathy”, accusing him of not understanding the current situation in the UK.
Campaigner Hannah Deacon, whose son Alfie Dingley is one of the few children in the UK to have access to medical cannabis on the NHS, visited Number 10 earlier this year to personally ask the Prime Minister to “stop the suffering” of patients and their families.
More than 100 cross-party Parliamentarians and peers also wrote to Mr Johnson asking him to intervene.
Watching his reaction yesterday, Deacon told Cannabis Health: “It makes me so angry.
“Only three prescriptions have been issued in the three years since the law changed. I don’t understand how the Prime Minister can be so out of touch and not care about some of our most vulnerable people.”
Ruby Deevoy, a UK cannabis journalist and advocate for wider access for patients, called his “dismissive response” a “disgrace”.
“It’s evident that Boris Johnson either does not understand the current situation surrounding medical cannabis access in the UK (which I think we all know not to be the case), or he has something else at stake,” she said.
“Whatever that may be, it is evidently far more important to him than the lives of extremely sick children, who could not just be surviving, but thriving, if only he granted them access to the life-saving cannabis medications they need and we know works for them, on the NHS.
“His dismissive response is a disgrace, completely lacking in empathy and demonstrates yet another reason he’s not fit to run our country. Whoever he’s protecting, it’s not the people.”
Posting on her social media channels following Prime Minister’s Questions, Ms Antoniazzi added: “The PM doesn’t even know what his own government is doing and the families of sick children are paying the price.”
How do I access a medical cannabis prescription?
Two experts discuss the process of accessing a medical cannabis prescription
Curious about accessing a medical cannabis prescription? It can be difficult to know where to start or what to expect.
Cannabis Health News editor, Caroline Barry, who has a medical cannabis prescription for ADHD, and Dr Jean Gerard Sinovich, medical director of the Cannabis Access Clinics discuss how the process works.
When I decided to get a medical cannabis prescription, I had exhausted all the other options. I had tried prescription drugs for ADHD like Ritalin with little success over my teenage years before moving to various therapies as an adult.
I tried holistic approaches such as acupuncture or CBD which improved my sleep and anxiety but did little to my hyperactivity. Eventually, I reached out to the NHS for medication before having no luck.
Prepare your paperwork
I found a clinic in the UK that offered cannabis prescriptions for ADHD and reached out to them for assessment. The first thing I needed to do was collect my paperwork. As I already had my diagnosis from a psychiatrist, I needed to get proof of this along with which medications I had had over the years.
Dr Sinovich said: “To be assessed for medical cannabis, you need to apply to a clinic either directly or through your GP. We normally advise people to get a full medical history from the GP as to what medications they tried in the past. The person is assessed on an individual basis to find out what the patient is presented with and who specialises in that.”
He continued: “The aim of medical cannabis is to improve your pain, sleep and mood. Patients would have had to have tried other conventional medications for their conditions. If they have exhausted most possibilities and avenues then they could be assessed for medical cannabis. It doesn’t mean that every patient who comes to the clinic is prescribed cannabis.”
Prepare for your assessment
When it was time for my assessment, I was actually really nervous. When you are speaking to doctors, it can be extremely nerve-wracking to accurately get across the level of pain or discomfort you are in. I find that because my ADHD is not visible, I worry about being believed or qualifying for medication. Having had no luck with conventional medications, I was worried that this was my last resort and I wouldn’t get a prescription.
My assessment was with a psychiatrist online. A lot of medical cannabis clinics are based in London which I am not. It’s one of the few positive things to come out of Covid-19, that we have held on to telemedicine.
My appointment was very thorough, but none of the questions were difficult. The feeling of relief when the doctor said he thought I qualified was immense.
Dr Sinovich added: “The consultation process normally lasts anything from half an hour to 45 minutes where we go through the medical history, what their aims are, their views and why they decided to access cannabis at this stage in their life. We also have to make sure there are no possible interactions with any of the other medications.”
Costing out medical cannabis prescriptions
Dr Sinovich highlighted one of the key issues with accessing medical cannabis which patients need to be aware of – the cost.
“The most important thing is that it’s not [widely available on the NHS] so it’s all privately funded. People must be aware of the costs that it entails,” he said.
“It takes time for cannabis to work, it’s not overnight. It can take a good six to eight weeks and you need to follow up continuously to make sure there are no side effects.”
Affording medical cannabis can be difficult as there are few options available for support. Despite cannabis being legalised on NHS three years ago, there remains only a handful of prescriptions which have been written.
Project Twenty21 can help with capped prescription costs as long as patients can qualify for the conditions listed and have a history of two or more prescriptions that have proved ineffective. They have recently launched a student scheme aimed at helping patients affording medical cannabis while on a college-friendly budget.
The cost of medical cannabis tends to be dose-dependent. Cannabis Access Clinic estimate that the average cost of cannabis prescriptions in the UK is around “£150 to £250 per month for a THC and CBD inclusive prescription.”
A CBD only prescription is listed as being on average £100 to £150 a month although they note that some epileptic disorders will require much higher doses.
Patients also have to take into account the consultation fees which can vary from £100 to £200 depending on the clinic. Integro Medical Clinic lists their initial consultation at £95 to £195 with repeat consultations at the same price. Patients are also monitored through online questionnaires about their moods.
Speaking to your GP
When it comes to speaking to your doctor about a decision to try medical cannabis, they may not be supportive. If a patient prefers not to speak to their GP about it, they can ask for a copy of their medical records and self-refer.
I spoke to my GPs in both Ireland and the UK. While I had a positive reaction from my English GP who was interested in what effect this would have, my Irish GP was not as supportive. He was dismissive of my seeking medication as an adult in general so the medical cannabis element was a step too far for him. I got my paperwork and have not been in touch with either about my ADHD since then.
Dr Sinovich said: “Most of the time, you can request paperwork from the GP because it’s your details at the end of the day. Most GPs are quite open to medical cannabis in terms of an augmentative treatment to help with different conditions. You get very few GPs that say no. If patients are having trouble with GPs then they can always arrange a call to explain the benefits. We do a lot of educational work with GPs as it’s new and with anything new to a market, people want to see results and can be sceptical about it.”
Don’t be nervous
Before I went for my assessment, I was very nervous. I have had bad experiences with doctors not listening or taking my ADHD symptoms seriously because they may not always believe in the condition. My Irish GP once said to me when I phoned to say I was seeking medication, that ADHD adults ‘grow out of it’, which is a common misconception about ADHD and some forms of neurodiversity. No wonder I was nervous but I need not have been, as the doctors were incredibly supportive. Knowing your symptoms is key though.
Where does my medical cannabis come from?
Once my assessments were over and the team had discussed my case and decided I qualified, I had to decide what the best course of medication was for me. I opted for a vape because it’s easy for me to fit that into my lifestyle in comparison to oils. ADHD people are often forgetful, and I know this applies to me, so I worried I would forget to take an oil dose. My prescription was sent to Rockshaw pharmacy and arrived at my door discreetly. No one would have had a clue as to what the parcel actually was.
“Once you’ve had your consult – and every clinic is different – the script is approved by a multi-disciplinary team then goes to an independent pharmacy,” explained Dr Sinovich.
“The pharmacy will then get the product to them in the next day or within 24 hours. If you are outside of the UK then you may have to wait a little bit longer. For example, we have Guernsey patients who have to apply for a licence so it does take a little bit longer for that process. The patient deals directly with the pharmacy in terms of costs.”
Medical cannabis prescription abroad
It’s worth noting that if you travel, you may not be able to take your prescription with you. As an Irish woman living in the UK with a prescription, I can’t travel with my medication back to Ireland. If you do travel then be prepared for the potentially negative outcome.
Dr Sinovich agreed: “It’s a very difficult one, unfortunately. If you look at the United States and Canada then you can’t travel between borders as there are strict rules in place. We normally advise patients to consult with the consultant and the terms of the country that they want to visit. There are no blanket rules for everyone but most countries in Europe are happy for individuals to transport their medical cannabis across borders. It varies from country to country. Normally we issue a script that they have to carry in hand luggage.”
“We normally advise individuals that it’s not for public use. It’s why a lot of people converted to oil or a capsule. People must realise that if they do get stopped then they need to show proof that they are taking medical cannabis legally and according to doctor’s guidelines,” said Dr Sinovich.
“In the UK, it’s still relatively new so people are starting to get more access to products. It’s going to take some time but the law will change.”
Still thinking about accessing a medical cannabis prescription?
My prescription has been the best thing I’ve ever done. It’s helped me to enjoy my evenings instead of being hyper-focused and tense and I also sleep better now.
Dr Sinovich said: “The nice thing about medical cannabis is it is tailored to an individual. I don’t think I have a single patient with exactly the same dose. It’s a tailor-made plan for an individual and you assess them to see if it’s working. You can adjust the CBD to THC ratios and there are lots of different products to choose from.”
He added: “It’s another armour you can use in treatment. There are multiple CBD receptors in the central nervous system. It’s about adjusting the mindset, obviously, it takes time and individuals need to invest in it. It’s investing in your future itself and what you could achieve or how you could improve your life.
“I have a lot of patients that I’ve seen for whom it is life-changing.”
Cannabis legalisation not linked to rise in car accidents, says study
Cannabis legalisation sparked fears that it would increase driving-related emergency rooms admission
A team of researchers have studied emergency room records and determined that cannabis legalisation in Canada has not resulted in an increase in admissions.
The data published in the journal of Drug and Alcohol Dependence revealed that there has been no increase in two provinces, Alberta and Ontario.
Canada legalised cannabis in 2018, which led to concerns that it would increase the number of traffic injuries, especially among young drivers.
The researchers, from the Centre for Addiction and Mental Health and the University of British Columbia, assessed emergency department records to find any patterns in traffic-injury visits in the months leading to the legalisation and immediately afterwards.
They separated the drivers into two groups focusing on adult drivers and teenagers aged 14 to 18-years-old.
Cannabis legalisation and drivers
They reported: “The current study found no evidence that the implementation of the Cannabis Act was associated with significant changes in post-legalisation patterns of all drivers’ traffic-injury ED visits or, more specifically, youth-driver traffic-injury ED presentations.”
“Given that Canada’s Cannabis Act mandated that the Canadian Parliament review the public health consequences of the Act no later than 2023, the findings of the current study can provide empirical data not only for the Canadian evaluation of the calculus of harms and benefits but also for other international jurisdictions weighing the merits and drawbacks of cannabis legalisation policies.”
The Canadian data is consistent with studies from the United States that show no changes in traffic safety in the months following legalisation.
The study does not take into account the longer-term implications of legalisation despite other studies producing mixed results.
A study from earlier this year reported that drivers who use cannabis may not feel as impaired as someone else who used the same amount but a different strain.
UK Fibromyalgia to host two-part webinar on medical cannabis and CBD
A two-part series will educate on the experiences of those living with fibromyalgia and arthritis
UK Fibromyalgia, a magazine dedicated to the chronic condition, will host a two-part webinar discussing the role that medical cannabis and CBD can play in treatment.
UK Fibromyalgia has joined forces with Integro Clinics, Primary Care Cannabis Network, Cannabis Patient Advocacy and Support Services (CPASS) and PLEA (Patient-led Engagement for Access) to present a two-part webinar discussing fibromyalgia, arthritis and cannabis medicines.
An approximate 1.5-2 million people suffer from fibromyalgia and 10 million have arthritis in the UK. The management of the symptoms of these conditions can take a long time to diagnose correctly and can take even longer before they are effectively brought under control.
This two-part series aims to educate attendees on the experiences and lives of those living with fibromyalgia and arthritis, as well as show the benefits that cannabis medicines and CBD can have in alleviating symptoms of these conditions.
Ann-Marie Bard is one of three patients, who will be speaking at the second episode of the webinar. She suffers from fibromyalgia and takes medical cannabis to manage her symptoms. She shares her story from diagnosis to gaining her CBMP prescription and describes how it has improved her quality of life.
Ann-Marie was a respected and accomplished full-time dental surgeon, having practised for over 25 years before she developed fibromyalgia.
In October 2018, she started to experience unexplained pain all over her body, but as is very common, she did not get a final diagnosis until March 2021. She eventually saw a rheumatologist, who was able to classify what she was experiencing as fibromyalgia. This only happened as a result of an emergency dash to the hospital as she was in such crippling pain.
Anne-Marie said: “I had a major flare-up at work and had to go to the hospital, it was just terrible. I was in severe pain and couldn’t walk, this was by far the worst attack I had ever had. That’s when things became clear and having seen a rheumatologist, I found out it was fibromyalgia, causing my pain.”
“I was put on various medications such as steroids and pain killers; tramadol, amitriptyline and duloxetine. At first, these helped the pain slightly, but the side effects made me feel like a zombie, I had ‘brain fog’, exhaustion and I wasn’t able to drive while I was on them.”
Her fibromyalgia led to her losing the full use of her hands and she was left unable to grip, which meant that she could no longer perform surgery. This had a devastating effect on her mental and psychical health.
It reached the point, that the side effects of these conventional medicines were becoming unbearable. She had first read about Dr Anthony Ordman, a well-known pain consultant and medical lead at Integro Clinics in a UK Fibromyalgia Magazine.
Ann-Marie decided that medicinal cannabis might be worth trying as a solution to her pain. After first seeing Dr Ordman, she immediately felt that she had come to the right place to help her deal with her condition.
Anne-Marie said: “Dr Ordman made me so calm and at ease. I found the whole process so easy because I was speaking to someone who truly listened, understood everything there is to know about fibromyalgia and cared. He really went the extra mile, keeping my GP in the loop and letting them know exactly what he was going to prescribe. Speaking to him made me feel secure and that I was going to get the help that I needed.”
Ann-Marie was prescribed a mix of THC and CBD cannabis oil, which she found had a hugely positive and beneficial effect.
Fibromyalgia and cannabis
She added: “The cannabis oil has helped me so much, taking it means I can actually get on with things like yoga, gardening and driving as there is no ‘brain fog’ effect. I can be present mentally, rather than being spaced out and spend more quality time with my family. For me, there are no side effects from the oil, it doesn’t feel like it did when I was on all of the traditional medications. The oil has given me my life back. Cannabis medicines really should be more accessible for everyone, they have changed my life and I believe they can help people in a similar situation to me.”
Ann-Marie believes that more needs to be done to raise awareness when it comes to medical cannabis. She thinks that the NHS should understand that it really is a substantial alternative to conventional medicines.
She explained: “I’m taking part in the webinar because I believe, ultimately, that this medicine should be more accessible. Fibromyalgia sufferers should have access to information about medical cannabis and I hope to raise more awareness of it, letting people know that there are other options than just traditional opioids.”
To register for this free event please follow the links to get your tickets:
Part 1: https://www.eventbrite.co.uk/e/168090997699
Part 2: https://www.eventbrite.co.uk/e/168112536121
If you would like further information or to speak to Dr Anthony Ordman please contact Integro Clinics:
Dr Anthony Ordman senior clinical adviser and hon. clinical director Integro concluded: Integro Medical Clinics Ltd always recommends remaining under the care and treatment of your GP and specialist for your condition, while using cannabis-based medicines, and the Integro clinical team would always prefer to work in collaboration with them.
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