Battling Jake Barrow has vowed to fight on after seeing his request for medical cannabis refused – just a few weeks ago. Now 31, he was baptised in hospital and given only weeks to live after being born with diaphragmatic-hernia. Six months later he needed a further life-saving operation after the scars from the first surgery ruptured.
And, at the age of 19, Jake needed more corrective surgery leaving him with a criss-cross of foot-long scars across his torso. But this failed to quell the chronic pain; then a flare-up while practising with his band mates helped change his life.
The pain relief he secured on inhaling his first cannabis cigarette is described by Jake as ‘overwhelming’.
He said: “One of the band members gave me a smoke to deal with the pain and I felt an immediate relief all over the body.
“My whole body would often tense up, but within a couple of minutes it started to relax. I’d never really contemplated using cannabis before, but the reaction was immediate. It was such a relief to be able to turn away from the NHS-prescribed medicine I’d been relying upon.”
Jake recounts his early struggles: “I was relatively healthy when younger, but it all went wrong at the age of 19.
“I was experiencing severe stomach pains and the doctors went in to conduct some corrective surgery; I’m not sure they knew what they were correcting!
“They took out lower intestines to clear up the scarring of the previous operations, but it seemed to make the whole pain situation worse.
“I was in constant pain, it was debilitating, and it was a result of all of the damaged nerves that had accumulated as a result of the operations.”
He was subsequently diagnosed with chronic neuropathic pain and continued: “I was in a position where I was being rushed into hospital every couple, of weeks.
“I tried the conventional route with so many different dugs. And I’d top myself up with prescribed opiates, but it was making me really sick.”
Jake’s experiences have made him a strong advocate of medical cannabis; appearing on TV news and documentaries advocating more robust guidelines for medical cannabis use in the UK.
He is a long-standing member of cannabis campaign group the United Patients Alliance and five years ago he launched an on-line campaign, which received support from 3,000 people, to allow him to receive cannabis on a special licence. Until last year’s legal shake-up this was the only way to secure cannabis medicine through the NHS and Jake’s success broke new ground.
Jake added: “I was the first person in the UK to secure a licence to use Sativex for chronic neuropathic pain, but I found it very weak, it was a bit like like peppermint water.
“I told the consultant and he said ‘why don’t you just grow some weed for yourself and if you get into trouble give me a call’. And, touch wood, I’ve never got into trouble with the law, but it was good to have his blessing at the time.”
In November last year the UK Government lifted constraints on the prescription of cannabis, with the whole class of cannabis-based medical products moved out of Schedule 1 of the Misuse of Drugs Regulations 2001.
GPs wanting to prescribe cannabis for a patient have to refer them to one of 80,000 specialists on the GMC (General Medical Council) register. These medics can prescribe a range of cannabis-based drugs, but for those known as ‘specials’, they would also have to seek approval from a higher medical body.
In late January this year Jake went to see a consultant seeking a cannabis drug from Dutch manufacturer Bedrocan containing a much higher ratio of the psychoactive Tetrahydrocannabinol (THC) to the calming Cannabidiol (CBD).
Jake recounts his experience at this consultation: “The consultant was very kind and accepting of my situation and my need for Bedrocan or something similar, but he was hesitant to prescribe me, there and then, as he claimed there wasn’t enough clinical evidence supporting the use for chronic and neuropathic pain.
“I do feel disappointed and having had time to think about what was said I’m going book another appointment to go in with someone by my side. The rescheduling of cannabis last year meant that he is actually allowed to prescribe the medicine. I need to make him aware of this at the next appointment.
“But, all in all I do feel relieved that he is prepared to prescribe. He just needs a nudge of reassurance that he is allowed to right now.”
This experience chimes with many others in similar situations, and their concerns have found support among many medical professionals.
It was the high profile case of Billy Caldwell which helped prompt the UK law change, but, at the time of Jake’s interview with Cannabis Health, Billy was still travelling to Canada with his mother Charlotte to receive the treatment he needs to cope with his epilepsy. Jake continued “I am very disappointed with situations such as this. It is ridiculous that he hasn’t got it yet, when they know how vital it is to him.
“It astonishing, and it dangerous for us medical cannabis users. The society that we now live in; it seems like no-one has got our backs.”
In a heartfelt plea to the authorities he continued: “Can you please take us more seriously. Our lives are not a joke. Perhaps they are going to drag it out as as long as possible and think people are going to forget about it, and perhaps they hope we will eventually go away.”
Jake has been using cannabis for around 12 years and had become adept at growing his own favourite ‘cheese’ strain of the drug. Extracting a high THC content from the flower bud he would sometimes cure it to make a resin, or dry it and smoke or, latterly vaporise it.
However, since moving home late last year he is not in a position to cultivate his own plants and has to secure his supplies through a local ‘weed dealer’.
He says it is costing up to £100 a week, depending on whether ‘it’s a good week or a bad week’. But adds: “On some days no cannabis is strong enough to cope with the pain. The adhesions and scarring all tense up. It’s tough. It feels like a ball of tissue in my stomach, and when it gets like that, and it really hurts, no cannabis is strong enough.
“My body completely spasms out. I sometimes have to go into hospital to get a morphine injection to allow my abdomen to release itself and relax.”
From rural Leek in rural Staffordshire Jake now lives in Woodford, Essex: “Still in the country, but close enough to the city.” he says. He’s held many jobs over the years from working at a local gun club, at the age of 14 in Staffordshire, to pub pot washer.
He is now in receipt of Employment Support Allowance, cleaning offices for eight hours a week, but he’s always struggled to forge a steady career due to the constraints of his illness.
He adds: “I went to Stoke college to study music technology and then on to university after my operation, but I was too poorly and dropped out and went back to home to Leek. I just struggled too much with my health at this time in my life.”
The keen musician was taught the piano as a youngster by his mum and he now makes electronic music, with early 1990 dub and bass his choice. His electronic works have been published on Sound Cloud under the name Abstract Dynamics, a “catchy name” he chuckles on disclosure, and he says he will be releasing a record this year. He says he likes to allow ‘the space around the sound to breathe’ and has been invited to Iceland to make music.
Jake talks of going back to live in Leek one day, but in the meantime he feels there is still much to do. The recent setback has not left him too downhearted and fuels his cannabis advocacy.
“Patients in the UK need access to medical cannabis immediately. To expect anyone to cope or even survive on heavy opiate-based medications for their entire lives shows how both cruel and inhumane political ideology can be. We need to remove the stigma from medical cannabis use.
“A lot of people are using cannabis now, in so many different ways and it’s quite incredible that it works so well, for so many different people, for so many different medical conditions.”