“It’s just not manageable” – Rising cost of living threatens patient’s access to medical cannabis

Matthew Taylor can be better dad thanks to medical cannabis, but he fears that the rising cost of living will make funding his medication impossible in the coming months. 

Two years after he first obtained a prescription for medical cannabis, dad-of-three Matthew Taylor, recently returned to physiotherapy for the first time in years.

“My physio is blown away by the progress I’m making at the moment,” says the 43-year-old.

“I am able to do some gentle tai-chi exercises, and a couple of yoga stretches as well as the physiotherapy exercises, and there was no way I would have been able to do that before medical cannabis.” 

“I just couldn’t do the exercises they wanted me to, I was in too much pain.”

Matthew has come off most of his prescription medications, which left him a “zombie” and is a more active and present father to his three children.

He continues: “Cannabis has allowed me to get involved with them, I’ve been to award ceremonies to celebrate their achievements this year. We have been on days out, and I can help them with their homework. I have seen how much their confidence levels have improved.

“Before I had medical cannabis I was just in the background for all of this, on fentanyl and Tramadol and morphine patches. They would talk to me and I was just nodding and drooling in the corner, I couldn’t engage.”

Matthew Taylor

Matthew has a degenerative disc disease and lumbar spinal stenosis, which occurs when the space inside the spinal canal is too small, putting pressure on the spinal cord and nerves that travel through the spine. 

He experiences chronic pain, muscle tension and spasticity and neuropathic pain, and was recently diagnosed with osteoarthritis.

“My pain is still there, I will always have to deal with it, but it’s manageable now,” says Matthew.

“I can get up and go out with my family, not as much as I’d like but a lot more often than I used to. 

“I haven’t used my wheelchair since last year. My muscles are more relaxed…I have much more mobility, I can lean forward and stand up a lot easier.”

Matthew’s wife has been a full-time carer for him and their children for the last eight years. Now he’s back at physio he hopes he might be able to drive again one day to help her out.

“I don’t know where I would be without her, she is the most incredible woman,” he says.

“She does everything for us. It’s been so tough for her, but medical cannabis has taken the pressure off, it’s taken the pressure off all of us. 

Rising costs

Unable to work due to his condition, Matthew relies on support from the government and more recently has only been able to afford his monthly prescription, which costs £250, thanks to help from a family member.

With the cost of living crisis in the UK hitting people hard, he is unsure how long it will be sustainable for.

Average yearly energy bills are expected to top £4,000 in the new year, alongside rising inflation which has seen the cost of food and household goods hit their highest levels ever. 

Those families relying on benefits and universal credit are expected to be the worst hit. And that’s without the costs of a monthly private prescription.

“Living on benefits brings a real sense of shame of having to live off the state, but I do appreciate that it’s there because we wouldn’t have been able to survive without it,” he says.

“Without help I cannot afford the medication, it’s as simple as that.

“We’ve had to double what we’re paying for heating and the price of everything is going up, so the additional cost of medication is just not manageable.”

The only option

Without access to medical cannabis, Matthew has few if any other options for managing his chronic pain.

New NICE guidelines published last year aim to reduce the prescribing of opioid medications for primary pain conditions.

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. 

But as Matthew has found, exercise and physiotherapy can feel impossible when your pain is untreated.

“Medical cannabis is the only real solution to this, because everything else has been taken off the table,” he says.

“If I have to come off it now, I may not have access to the medications that I was on before, I’ll be straight back to screaming again, to not being able to move, to be bedridden for days at a time, unable to sleep because my muscles are in spasm.”

Matthew has already had to go without his prescription some months, due to not having the funds.

He saw a considerable decline in his health during that time and was forced to step back from the voluntary work he does with patient advocacy group, PLEA (Patient-Led Engagement for Access), as a member of their management committee. 

“Without cannabis I’m not able to help other patients and that’s the main thing that gives me a sense of fulfilment and self-worth at the moment,” he says.

“Not being able to do that is another step back but unfortunately, that’s always looming over me.”

He adds: “I’ve had a few reminders that I should be ordering my next month of medication, but I can’t do it, because at the moment I can’t afford the £30 repeat prescription fee, let alone the money for the medication itself. 

“I hope I can get some help, but if not where that will leave me, I don’t know. I won’t be able to communicate or be as involved in advocacy and I’ll probably have to step away from physio. It’s such a huge thing after all that recovery.”

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