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“Doctors laughed in my face when I told them cannabis helped”

A disabled woman living with severe chronic pain is fundraising for medical cannabis treatment

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Heather has been living with chronic pain for over a decade

A disabled woman who lives with severe chronic pain has launched a fundraiser in a desperate attempt to access medical cannabis. 

Some days the pain is so bad that Heather can’t get out of bed.

She will lie there screaming and crying because it hurts too much to move. 

“It’s like you’ve been run over by a truck, but the truck never stops rolling, it’s just constantly running over you, and then someone is beating you with a sledgehammer at the same time,” says the 40-year-old.

“It’s just horrific. You can’t get comfortable because of the pain, but it hurts too much to move. Think of the worst thing you can imagine times a million, and then maybe that’s something close to what it’s like.

She adds: “It’s like that every second of every day, it never stops.”

When her pain is not at a nine or 10 on the pain scale, Heather can just about manage to get out of bed and wash or shower, before moving downstairs to sit in her chair, where she’ll spend the majority of the rest of the day.

“I don’t get up at until 11am because I have also have chronic fatigue, and the opioids make that worse,” she explains.

“Then I’ll hobble to my chair and sit on my laptop clicking links on YouTube because it hurts to type. I’ll take naps, I might go back to bed if the pain is too bad.

“Around dinner time I’ll start watching movies and then at 9.30pm I’ll go to bed and lay there for the rest of the night.”

Heather began experiencing unexplained pain around a decade ago. Despite numerous trips to the doctor they never investigated beyond sending her to physiotherapy, which she says made things worse.

“Years passed and it got worse but the doctors still didn’t know what’s going on,” she says.

“They would say ‘oh you just need to do some stretches’- no one sent me for tests or an MRI to investigate.”

The about four years ago her condition deteriorated rapidly.

“I became bed bound. I’d be screaming at night and crying because I couldn’t sleep, it was unbearable,” says Heather. 

“I spent around a year trying to find a doctor who would listen and eventually I was sent to a pain clinic.”

Unable to work, Heather had to give up her admin role and couldn’t walk or stand for more than a couple of minutes.

She was gradually prescribed stronger and stronger opioids until she became reliant on Fentanyl patches. 

“It did get me out of bed and knocked my pain down to about a seven, which was brilliant, but I get withdrawal symptoms between patches, such as chills and sweating,” she says.

“It’s now been two years and my pain is back up to a nine. I have to put the patches on every 48 hours instead of 72. I know it’s only a matter of time before my pain is at 10 again, every day I’m a little bit closer.” 

In light of the new National Institute for Health and Care Excellence (NICE) guidelines published earlier this year, Heather now worries that even this limited option will be taken away from her.

The regulatory body has advised doctors against prescribing common painkillers such as  opioids and paracetamol for chronic primary pain conditions, in favour of exercise and alternative treatments such as acupuncture. 

“The doctors have told me there is nothing else for me and now they want me off opioids too,” says Heather.

“I worry about it every day. Now at least I’m still getting some pain relief, but if they were to take that away and leave me with nothing, that sounds like hell.

“Fentanyl was a lifesaver, before I had that I wanted to die, it was just unbearable, having that level of pain every second of the day. I can’t live like that.”

But Heather does have another option, in cannabis medicines.

A recent study by Drug Science found medical cannabis was safer and had more benefits than 12 of the most commonly prescribed painkillers, in patients with chronic neuropathic pain (CNP).

Authors concluded that medical cannabis contributes more to patients’ quality of life and is more favourable in terms of side-effects such as cognitive impairment, dizziness, constipation, affect disorders, overdose toxicity, respiratory depression, withdrawal, and dependency. 

Before she became too ill to work, Heather would travel abroad and take holidays in countries where cannabis was legal, such as Amsterdam and the US.

“I’d save up money and take holidays just to get pain relief,” she admits.

“It was like going away and winning the lottery, I was never pain free but it knocked my pain down to a six and helped with the stiffness for my sciatica and migraines as well.”

But back in the UK she came up against a brick wall.

“When I first told my doctor that cannabis worked he started laughing and said I should move to the US,” says Heather.

“There’s been many times when I’ve had doctors laugh in my face when I’ve told them cannabis helps. They say there is nothing they can do, some of them don’t even know it’s legal.”

Heather says she has tried contacting her MP for help and has even been in touch with NICE directly, but is constantly told there is “nothing they can do”. 

She started her blog, Chronic Heather to document her journey and to raise awareness of the struggles facing her and other patients trying to access cannabis medicines on the NHS.

“I’m sure a lot of people won’t even believe what I’m writing, because it’s so crazy to think that this is how people are being treated in England in 2021,” she says.

“The NHS is great if you break your leg or have something it can treat, but I don’t think the care is there for people with chronic conditions.”

Many chronic pain patients are now accessing legal prescriptions for cannabis medicines via private clinics, with the help of schemes such as Project Twenty21.

Preliminary results from the study, which aims to create Europe’s largest body of evidence for the safety and efficacy of medical cannabis found the treatment improves quality of life by more than 90 percent – with the vast majority of patients (56 percent) reporting chronic pain as their primary condition.

But with Heather’s only income the £300 a month she receives through disability benefits, even this option is out of reach for her.

“I’m not eligible for Employment and Support Allowance due to not having paid enough national insurance as I was only working part time before being unable to work at all.

“I don’t even have the money to access cannabis illicitly. I have considered growing but this costs money too and I don’t know if I could physically do it. 

“I would be tempted if my pain gets worse, but I don’t want to break the law, why should I risk getting arrested? I shouldn’t have to, it’s legal.”

Instead, Heather has launched a fundraising campaign to try to raise at least £2,260 to fund  private prescriptions and consultations for a year. 

Speaking to a UK clinic at a free eligibility interview, doctors have already suggested Heather try a mix of two products which would be £300 a month, but she says this is “too much to ask for”.

“Asking for the two products which were recommended to me would be £4,060 a year, so I’m only aiming for the minimal 1g a day, which would still help although nowhere near as much,” she explains.

“If I could have a year with my pain reduced every single day and not having to worry about the money it would be absolutely amazing, it would be a dream.”

Heather adds: “I need the hope of having some pain-less days, so I can have more of a life.”

Donate to Heather’s fundraising page here 

 

Sarah Sinclair is a respected cannabis journalist writing on subjects related to science, medicine, research, health and wellness. She is managing editor of Cannabis Health, the UK’s leading title covering medical cannabis and CBD, and sister title and Psychedelic Health. Sarah has an NCTJ journalism qualification and an MA in Journalism from the University of Sunderland. Sarah has over six years experience working on newspapers, magazines and digital-first titles, the last two of which have been in the cannabis sector. She has also completed training through the Medical Cannabis Clinicians Society securing a certificate in Medical Cannabis Explained. She is a member of PLEA’s (Patient-Led Engagement for Access) advisory board, has hosted several webinars on cannabis and women's health and has moderated at industry events such as Cannabis Europa. Sarah Sinclair is the editor of Cannabis Health. Got a story? Email sarah@prohibitionpartners.com / Follow us on Twitter: @CannabisHNews / Instagram: @cannabishealthmag

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