He says: “It’s cruel. I am being denied the medicine I need. All I want to do is to have a life, get married and, all well and good, go back to doing a few hours work if I can, but as things stand at the moment there is no chance.
“I can barely look after myself, so how can I meet someone, have a relationship and get married, let alone have kids, it’s too difficult. So I’m being held back by this out-of-date attitude we have here in the UK.”
Diagnosed with fibromyalgia in his early 20s Robert criss-crossed the globe as an IT consultant with the
help of a cocktail of analgesics. But the excruciating pain left him unable to work by his early 30s and, on the recommendation of a friend, he found relief and comfort for his condition from cannabis in his early 40s.
He said: “My FM (fibromyalgia) can be very severe and at times I can spend days or weeks bedridden, as well as the constant battle fighting either insomnia or chronic fatigue, as well exhaustion.“It affects my balance, coordination, circulation, grip, gait, to name just a few.“I’ve struggled to hold down employment as I was in so much pain and constantly fatigued.“By 2005 I could not work any longer due to the pain affecting my entire body, all year round, as opposed to just during the cold winter months.”
But it wasn’t until a decade later that Robert looked for help for his condition out-with the medical profession. He said: “As I was in so much pain, it was beginning to make me feel like I was losing the will to live. The benefit of having intravenous infusions of Lidocaine (local anaesthetic) and hydrotherapy had stopped offering me enough pain relief to allow me to stay in employment and remain positively active.
“I knew I needed to do something as my life on fentanyl, buprenorphine, morphine and tramadol (all opioids) was helping deal with the pain, but causing many other problems such as severe nausea, headaches, asthma and my skin becoming raw and puffy. I became housebound for the majority of the time.
“I was spending most days in bed, fatigued and unable to take care of myself as the medication was very difficult to tolerate.“So I spent several months researching on the internet and discovered many people who had found that cannabis had helped with FM and similar ailments.” At first, Robert smoked the
cannabis flower, and also took oil under his tongue and noticed immediate improvements.
He said: “The pain became much more manageable. I was, and still am, more stable now than I have ever
been and I am sleeping better at night. I am now taking none of the tablets like Tizanidine, Clonazepam,
Temazepam, Zolpidem and Diazepam.”In order to stay within the law, Robert applied for a Medicinal Cannabis License but was refused.
He also requested access to licensed drugs, including Nabilone – used to treat the nauseous side effects of
chemotherapy – but was again refused. With these avenues blocked Robert sought succour overseas, successfully securing prescription oil and cannabis flowers from a Dutch doctor.
And, for 18 months he successfully criss-crossed the Channel for supplies of cannabis oil and flowers bringing long-lasting balm to his discomfort. Robert’s medication – which contains the psycho-active ingredient THC -was supplied through a Dutch pharmacy and made by Dutch manufacturer Bedrocan.
He said: “THC takes you away from the pain. It takes you to a different place in your mind, somewhere to relax, a break from the screaming, shouting frustration and hurt.”
He likes the way the system operates in Holland and would like to see a similar one adopted by the UK. “I could buy the drugs ‘off the street’ and make my own oils but if it comes off the street you don’t know what’s in it; it could easily cause psychosis, which is also why I rather vape than smoke.
“People off the street, they help me, but that’s not the way to go. You don’t know where the money’s going; could it be directly funding terrorism? It’s ethically questionable.
“As well as these issues over quality I’m a law-abiding citizen, I don’t want to be doing something wrong. I want to stay on the right side of the law. “There are all kind of pitfalls with my cannabis life right now. I know that if I’m ‘too high’ I have to wait until it passes before I drive, but nevertheless, if there was to be an accident and I am on the medication without a prescription it could cause all kinds of difficulties.
“It’s stopping me going out, it’s stopping me doing things, it’s a block in my life. But taking medicinal grade cannabis is different, if doctors think there’s a risk then they would allow you to take in a different way.”
During the 18 months when his life was more manageable Robert pursued his passion for cinema as Executive Producer of a 15-minute short film ‘Samuel-613’ which was nominated for a BAFTA award for
best short film/drama in 2016. However, this good humour was not set to last and in June last year he
was stopped by customs officers returning from Holland and his newly prescribed £1,000 cannabis
cargo was seized and destroyed.
With his drugs confined Robert opted to leave the cannabis alone for while; saying he felt there was still enough in his system to get him through the cold winter months. But, a shunt on the M25, involving three cars back in June last year when a car ran into the back of his vehicle while in stationary traffic, ruined his summer and forced a return to Holland for a one-off trip for some cannabis oil.
Robert says his GP, pain consultants, pain psychiatrists, physiotherapists, and rheumatologists have all been very supportive but are unable to provide private prescriptions within the confines of the UK’s current legal position. He said: “I told them what I was planning to do and being honest with them has helped bolster their support further.
“They noticed how much the medication has helped during the period of eighteen months when I maintained a regular routine, so there is no dispute whether it is the right thing for me to do. “The way I see this is that I am a victim, I’m not a criminal. I feel like a criminal, but I’m a victim.”
While happy to see the law change in the UK he still feels it will be sometime before he can secure, on prescription, the medical cannabis he needs.
He says: “This time last year, we had no chance of the law being changed and I personally believe it won’t be until January 2020, at the earliest, when I’ll be able to obtain what seems, still almost, impossible right now.
“I am pleased, but there is still a very long way to go in my opinion and, despite my circumstances it remains very difficult, or in my case, impossible for me to obtain it legally through the NHS. My GP, based on my history, should be allowed to prescribe to me, but sadly this is not the case.
“My pain consultant and the multidisciplinary team at my hospital are hesitant as they do not have enough understanding of cannabis and how it should be prescribed, how it can be sourced, let alone the many different strains from various cannabis producers available.
“I’ve been told it could be at least another 12 months before I could be prescribed cannabis through the NHS, but as the left-hand does not know what the right hand is doing, I think it could be much longer.”
The Government recently confirmed that up to 80,000 registered consultants will be able to prescribe cannabis, but Robert highlights how the vast majority of these will need training, causing further delay and uncertainty.
In time Robert hopes he’ll be able to get to a Tottenham Hotspur home game in the new stadium and pursue his family and working dreams. But, in the meantime, he still hopes he’ll be well enough to attend the Berlin Film Festival.
He added, “I’ve been ill for over 20 years, and it may well be a few more before I can access the correct
treatment to address my condition. “So for me, nothing has changed, until concrete plans are put in place
and this will not happen overnight.”
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