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“If you’re not going to give us painkillers, we need another option”

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headshot of Freya papworth

Freya Papworth was diagnosed with fibromyalgia two years ago

Chronic pain patients  are “terrified” in the wake of new guidelines advising doctors not to prescribe painkillers, while access to cannabis medicines remains out of reach for many. 

Freya Papworth has spent over £30,000 on private pilates classes and alternative treatments to manage her chronic pain. 

The 36-year-old was diagnosed with fibromyalgia only two years ago despite being in pain since the age of 13. 

Unable to find any reason for her pain, as a teenager doctors blamed it on her carrying her rucksack on one shoulder, then a car accident that she was involved in aged 21. After being thrown from a horse and breaking her back at 23, they promised she would bounce back “even stronger”.

Freya spent the next decade believing she was “going mad”, suffering from severe pain, major fatigue and constant sickness, before finally getting a diagnosis at a private clinic.

“It was both good and bad,” Freya, who works part-time in IT, as well as volunteering as women’s right’s advocate, says of the breakthrough.

“It was great because it meant they finally believed me, but it’s a condition which is still considered to be all in your head.”

Half of the population 

As fibromyalgia is considered a primary pain condition, according to new National Institute for Health and Care Excellence (NICE) guidelines published last week Freya’s doctors can no longer prescribe her painkillers, including opioids and paracetamol.

Instead it is recommended that patients with chronic primary pain conditions are offered a “range of treatments” to manage their pain, including exercise, CBT and acupuncture. 

Pain that lasts for more than three months is known as chronic or persistent pain. In the UK the prevalence of chronic pain is uncertain, but appears common, affecting perhaps one-third to one-half of the population. The prevalence of chronic primary pain is estimated to be between one and six percent in England.

“People with chronic primary pain should not be started on commonly used drugs including paracetamol, non-steroidal anti-inflammatory drugs, benzodiazepines or opioids,” the regulatory body said in a statement.

“This is because, while there is little or no evidence that they make any difference to people’s quality of life, pain or psychological distress, they can cause harm, including possible addiction.”

Freya in a brace after breaking her back

Freya after breaking her back aged 23.

Freya has battled opioid addiction twice since being prescribed them after breaking her back and knows the dangers well.

“I crashed my car and didn’t even realise when I was on Tramadol,” she says.

“I heard a bang but couldn’t work out what happened as my brain wasn’t registering – obviously I should never have been driving.  

“I’d be in the supermarket in the middle of paying and I’d just stop what I was doing because I was so distracted.”

Freya has now been able to come off the opioids for the most-part and is currently self-medicating with cannabis while she explores the option of a legal prescription.

But the prospect of no longer having access to these painkillers on her worst pain days is “terrifying”.

“I absolutely agree that opioids are not good long-term for chronic pain, but doctors prescribe these tablets and then six months later tell you off for being on them,” she says.

“When you are taking them every day you actually believe you need them and you can’t function without them. I know because I’ve been there. It’s not that we’re drug addicts, you can’t help but get addicted to the drugs that you’ve been given.

“It’s a journey you have to take with a doctor to use these medicines in the short-term while you look at what else you can do to then manage your pain.”

The new NICE guidelines do emphasise a need for “shared decision making”, putting patients at the centre of their care, and fostering a “collaborative, supportive relationship between patients and healthcare professionals”.

The guideline recommends “interventions that have been shown to be effective in managing chronic primary pain”, such as  exercise programmes, psychological therapies such as CBT and acceptance and commitment therapy (ACT). 

The hidden costs of chronic pain

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Freya believes you can’t “exercise yourself out of pain” but agrees that it is an important part of pain management. However, for her the thought of taking a yoga session without medicating first would be unbearable, she says.

“I do yoga but I couldn’t do that without the painkillers which get me on my feet,” she says.

“I spend a fortune of my own money on private classes, because group classes used to destroy me. If you’ve got a condition like mine, your stamina changes on a weekly basis and if you hold a pose wrong you could end up hurting yourself and triggering all of your pain.” 

Alternative therapies and private exercise classes do not come cheap and whilst there is an option to access these through the NHS, waiting times are lengthy and the care is not always up to scratch, she says.

“I stopped counting at £30,000 because I don’t want to know how much more I’ve spent,” continues Freya.

Headshot of Freya Papwrorth

Freya has spent tens of thousands on alternative therapies to manage her pain.

“There is the osteopathy or massage, hydrotherapy and physiotherapy – all of these things work in tandem to get you to a place where you can manage your pain.

“I have only been offered the very basics on the NHS. There is an eight week waiting list if you’re lucky and you’ve often got to travel miles to get to these appointments. I got my first NHS therapy first appointment a year after I was referred and I was once offered circuit training.

She adds: “Fundamentally you’ve got to pay for it if you want it today.” 

An alternative option?

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Cannabis has helped Freya manage her pain flare ups and some of the associated symptoms such as IBS, but the fact that she can’t legally access it – particularly the tinctures and topicals which she finds most helpful – without a prescription leaves her with limited options other than to source it illegally.

NICE does not recommend the use of cannabis medicines for chronic pain and a recent report from the International Association for the Study of Pain (IASP) said it could ‘not endorse’ the general use of cannabinoids to treat pain due to a lack of ‘high quality evidence’.

She now fears she will be left without access to conventional medicines as well and that cutting off people’s supply completely will lead to a black market. 

“If you’re not going to give us painkillers, give us some alternative options that we can actually access,” says Freya.

“I’m terrified of moving house and having to find a new doctor who might not prescribe. I’ve just had a flare up and have four tablets left – I’m going to have to hoard them and save them because I might not ever be able to get them again.”

She adds: “It is quite normal for someone to be in pain and not know why. To be told in that time that you can’t have pain medication you have to exercise, is just fundamentally wrong and really traumatic for that patient.”

A “positive difference” patient’s lives 

NICE recommends that antidepressants can be considered to manage chronic primary pain in adults, as evidence shows these medicines may help with quality of life, pain, sleep and psychological distress, “even in the absence of a diagnosis
of depression.”

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Nick Kosky, a consultant psychiatrist at Dorset HealthCare NHS University Foundation Trust and chair of the guideline committee said: “Understandably, people with chronic pain expect a clear diagnosis and effective treatment. But its complexity and the fact GPs and specialists alike find chronic pain very challenging to manage, means this is often not possible.

“This guideline underlines the importance of appropriate assessment, careful drug choice, exercise programmes, psychological therapies, and consideration of acupuncture in improving the experience and outcomes of care for people with chronic pain.”

The regulator is said to be producing guidelines on shared decision making and the safe prescribing and withdrawal management of medicines associated with dependence or withdrawal symptoms. These are expected to be published in June 2021 and November 2021 respectively. 

Dr Paul Chrisp, director of the Centre for Guidelines at NICE, said he hopes the recommendations will make a “positive difference” to the lives of patient’s living with chronic pain.

“This guideline is very clear in highlighting that, based on the evidence, for most people it’s unlikely that any drug treatments for chronic primary pain, other than antidepressants, provide an adequate balance between any benefits they might provide and the risks associated with them,” he commented.

“But people shouldn’t be worried that we’re asking them to simply stop taking their medicines without providing them with alternative, safer and more effective options. First and foremost, people who are taking medicines to treat their chronic primary pain which aren’t recommended in the guideline should ask their doctor to review their prescribing as part of shared decision making. This could involve agreeing a plan to carry on taking their medicines if they provide benefit at a safe dose and few harms, or support for them to reduce and stop the medicine if possible.

“When making shared decisions about whether to stop it’s important that any problems associated with withdrawal are discussed and properly addressed.”

 

 

Advocacy

How do I access a medical cannabis prescription?

Two experts discuss the process of accessing a medical cannabis prescription

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Medical cannabis prescriptions: A pair of hands being held out. One hand has pink and blue pills in the palm and the other has cannabis flower. The person wears a white lab coat

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.

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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.”

Medical Cannabis Prescriptions: A doctor in a white lab coat signed a prescription. In front of him, there is a yellow bottle with oil in it next to CBD capsules and a cannabis bud

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.

Medical cannabis prescriptions: A hand in a black rubber glove holds a small glass jar of cannabis flower

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.

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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.

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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.”

Read more about travelling with medical cannabis here

Police involvement

“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.”

Patients can also apply for ID cards such as MedcannID and Cancard which has been designed with the help of the police to identify medical cannabis patients.

Medical Cannabis Prescriptions: A doctor in a white lab coat signed a prescription. In front of him while examining a cannabis leaf

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.”

Read more: New study: can cannabis alter speech production?

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Cannabis legalisation not linked to rise in car accidents, says study

Cannabis legalisation sparked fears that it would increase driving-related emergency rooms admission

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cannabis legalisation car accidents

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.

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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.

Read more: Cannabis shortage may have caused a rise in synthetic cannabinoids being consumed

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Advocacy

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

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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’s story

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.

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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.”

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Ann-Marie was prescribed a mix of THC and CBD cannabis oil, which she found had a hugely positive and beneficial effect.

UK Fibromyalgia: A blue and white logo for the charity UK Fibromyalgia

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:

Website: www.integroclinics.com
Email: Contact@integroclinics.com
Twitter: @clinicsintegro

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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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