Three years on: Why we’re still fighting for fair access to medical cannabis

Three years since the legalisation of medical cannabis in the UK, patients reveal why they are still fighting for fair access.

Three years since cannabis was made legal to prescribe for medical purposes, on 1 November 2018, thousands of patients have seen life-transforming effects as a result of accessing a prescription.

But many are still suffering due to a lack of access on the NHS, forced to break the law or even sell their home to fund it.

Medical Cannabis Awareness Week, which takes place from 1-7 November, aims to highlight the current challenges and improve access for UK patients.

Here, several patients share the life-changing effects that medical cannabis has had on them and why they still continue to fight for fair access for everyone.

Lucy Stafford, advocacy director, PLEA, Ehlers Danlos syndrome

Lucy Stafford

“Three years ago my life was a blur of excruciating pain from dislocating joints at the smallest of movements, needing support from full-time carers to even use a bedpan as I couldn’t get out of bed safely. I had countless injections of incredibly powerful opioid drugs to try and reduce my pain. They never worked and as I became weaker, the pain medications became stronger. I felt like a shell and had no hope or idea how I could keep living in that state – that’s what constant severe pain does to you.

Three years ago Sajid Javid saw the suffering of disabled people and the benefits that medicinal cannabis could bring. Thankfully, he changed the law to allow legal prescriptions. My doctor and I were thrilled. This was my last hope for a life-changing treatment, after which I would be referred to palliative care. But when my doctor wrote me such a prescription, it was denied funding and I was told I could not access the treatment on the NHS. I was devastated. Like millions of other unwell people, I had no option but to break the law to find help. I was scammed, sent contaminated cannabis, left in vulnerable situations during drug deals and I was terrified of being caught. This was one of the lowest points of my life.

Today, as I am fortunate enough to be supported by my family to have a legal prescription, my health has never been better or more stable. I can now walk, sit, live independently, focus, study for a degree and live a generally normal life, away from hospitals and endless medical interventions. But funding life-saving medication is unsustainable as a disabled student on a very limited income, even at the heavily subsidised rate I receive as a patient with Project Twenty21. And I live in fear of losing access and getting sick again.

The current situation helps no one. Established medications, such as those that I was given, cost the NHS a great deal and can come with terrible side effects. The toll on the mental health of ineffectively treated chronic conditions, like my own, can make patients feel suicidal. And private prescriptions are expensive so people either can’t afford them or can be forced to choose between being in pain and being able to eat. That’s barbaric, and something the NHS was created to prevent.”

Gillian Flood, PLEA management committee, Fibromyalgia and PTSD

Medical cannabis patient, Gillian Flood

“Life before and after cannabis medicine really is like night and day, before constant pain left me feeling hopeless and depressed, unable to function, trying all different medications, dealing with awful side effects. Afterwards, I feel like me again. I can enjoy a meal, go for a walk, sleep and manage my pain better while having a clear head. While all this is amazing, the financial cost brings a whole new anxiety around how I afford my medicine, every month I struggle to pay for it. I don’t want to go back to my life before, not now I know I don’t have to suffer so much, there is a relief available, my plea is that this medication becomes available through the NHS so no patient has to endure the pressure of trying to fund a private prescription.”

Jim Finch, PLEA supporter, Tourette’s syndrome

Jim Finch developed Tourette’s after a serious car accident

“Medical cannabis has changed me from bed-bound to housebound and I can now be a proper father to my young children. Before, that simply would not have been possible. I’m as close to my old self as I have been since before the accident. There’s the injustice that people are going to prison for trying to get help for themselves but there’s also an injustice that people have to pay so much for private prescriptions. My partner and I sold both our cars, used all our savings and have borrowed thousands from family in the past two years. We are now having to sell my house and move in with my in-laws, along with our children to be able to continue this life-changing treatment. And all of it just so I can be present as a father.”

Jack Pierce, PLEA Patient Working Group, Autism and ADHD 

“Since becoming a medical cannabis patient, I have begun to feel like my life has a purpose again and is of value. Medical cannabis has begun to mitigate the highly complex and troublesome symptoms presented from my Autism and ADHD, allowing me to return to what could be a conventional life. Without this vital medication, I would live a low quality and sub-standard life. One of which is starkly different to the life described above.

The only form of treatment I would receive to mitigate my symptoms would be a series of SSRI inhibitors and amphetamines. These medications have been known to cause a series of adverse effects within myself, leaving my life yet once again unliveable. Therefore, my plea for Medical Cannabis Awareness Week is for the continued access of medical cannabis for patients like me here in the UK. I hope to one day finally be able to be prescribed and access my medication over the NHS, rather than the current private system, which is only seeing patients like me struggle further with their conditions and finances to be able to live what we all deserve, a life.”

Abby Hughes, PLEA Chair, Ehlers Danlos syndrome, Fibromyalgia and POTS

Abby Hughes

“Having witnessed the transformation of quality of life for many patients like myself, it is hard to accept that the only access many have to medical cannabis treatment is through the private sector. Why is there enough evidence for a private pain consultant or psychiatrist to prescribe unlicensed cannabis medicines, yet the same treatment is not afforded to patients via the NHS, which was created to provide universal, comprehensive and free health care?

With only three NHS prescriptions having been issued three years on from Sajid Javid’s promise to make medical cannabis treatment accessible, my plea for Medical Cannabis Awareness Week 2021 is that the real need for real world evidence is explored and accepted in evolving access to this new treatment.”

Maz Mills, PLEA Management Committee, Fibromyalgia

Maz Mills

“Whilst not new to the benefits of cannabis, the discovery of using a vaporiser was life-transforming. With chronic body pain caused by fibromyalgia, I could feel the relief washing over me. Whilst easy to be tempted to focus on THC, I have severe right hip pain which the THC only touched, despite wiping away the majority of body pain. It was the CBD/THC combination which bowled me over and closed that gap, with full body relief achieved.

I am blown away by the quality of life I have been able to grab back by coming off pregabalin, sertraline, propranolol and amitriptyline. Whilst initially they helped, after a while you’re left with a wild variety of side effects which change like the wind, providing barely any real relief. As well as physical relief, anxiety and depression are now much better managed.

It is hard not to resent that I was almost destined for a lifetime on those medications. Medicinal cannabis does a fantastic job of managing my condition holistically. I will never ever look back. My plea for Medical Cannabis Awareness Week is to have my medications available on the NHS, so I can afford other holistic treatments that compliment my cannabis treatment.”

Kayleigh Ross, PLEA Patient Working Group, Functional neurological disorder (FND), fibromyalgia and C-PTSD

Kayleigh Ross (left) and her partner who have both benefited from medical cannabis

“The government has not ‘delivered on its promises’ as Javid stated. In 2021, this important treatment remains inaccessible to hundreds, if not thousands of people whose lives could be transformed but are instead encountering huge problems as they try and afford private prescriptions. Enough waiting. We need more than just words, we need things to change.”

David Johnston, PLEA Patient Working Group, Autism, fibromyalgia and Ehlers-Danlos syndrome

“Now that I have a legal prescription it helps me fight some of my own ingrained stigma about cannabis. Goodness knows that I’ve found it helpful most of my life, but the very fact that it was illegal stopped me from recommending it to many friends and colleagues who probably would have benefitted. Now, I can be a little more confident when I can say to others that cannabis IS a medicine; the evidence is growing daily and my plea is that this is recognised.”

Medical Cannabis Awareness Week takes place from 1-7 November with online events throughout the week. For more information visit www.medicalcannabisweek.org.uk