Matt Hughes sees Britain’s medical cannabis blockade as the start of a race.
In this race, however, the clinicians and hospital bosses assembled behind the line are not poised to come flying out of the blocks.
Instead they are looking anxiously at their peers waiting to see who will cross the line first that they can chase into the unknown.
Matt and his wife have the biggest possible stake in how this plays out.
Their two-year-old son Charlie has a rare epileptic condition called West syndrome. His life has been transformed by medical cannabis, but the family has been unable to secure it on the NHS, hence a forthcoming court battle and the ongoing financial burden of an expensive private prescription.
Matt says: “As soon as one hospital trust or clinician prescribes, we’re hearing that the flood gates could open. At the moment it’s a question of who’s got the balls to step over the line and make the first prescription?
“They’re all looking at one another, looking for other NHS clinicians that have prescribed.”
Before they discovered cannabis medicine last May, Charlie was having up to 120 seizures a day and was on a regime of four anti-epileptic drugs at any one time.
Now taking cannabis medicine, his seizures are down to 10 to 20-per day and his development is gathering pace. The family followed the ‘start low, go slow’ approach to cannabis medicine, gradually finding the right product and quantity to best manage his condition – and he is in a much better situation now than when he took various anti-epileptic drugs.
“Beforehand, he was either sleeping or, when he was awake, he was just seizing. He wasn’t interacting and you couldn’t really play with him. There was no giggling or little baby noises. It was almost as if we didn’t really know our child, if that makes sense.
“Now, he’s like a different kid. All of a sudden he’s laughing, giggling, interacting and developing. He has speech therapy, physio and is at nursery and the specialists he sees are all saying his development is moving on.”
This change, while priceless to the family, comes at a hefty financial cost of around £1200 per month. Having been denied access to his treatment on the NHS, the family is taking NICE and Cambridge University Trust to court in what could be a landmark case.
“This isn’t just about Charlie, it’s about all children with these conditions being able to access medical cannabis. If they did give us a prescription, we hope it would encourage other people to stand up to the trusts and also it could help trusts to feel more confident in prescribing.”
On 1st November 2018 the government moved “cannabis based medicinal products” from Schedule 1 to Schedule 2 of the Misuse of Drugs Regulations 2001.
This enabled doctors on the specialist register to prescribe cannabis. The regulation change allowed for prescriptions for any condition and of any product meeting good quality production standards (EU Good Manufacturing Practice).
Unfortunately, since that point there has been no prescription of a full extract cannabis product on the NHS.
There are a number of speculated reasons for this. Partly there is a perceived lack of support and training around cannabis medicine for doctors, with the endocannabinoid system and cannabis plant rarely taught in medical school.
Also, although not relevant to epilepsy patients specifically, guidelines produced by influential bodies the Royal College of Physicians and NICE are largely negative about cannabis as a pain relief treatment.
Furthermore, an NHS doctor willing to prescribe cannabis needs to gain approval from their trust. But no trust has taken the bold step of agreeing to prescribe.
There is also the added complication that, save for the products Epidyolex and Sativex, cannabis medicine is an unlicensed treatment which means that the prescribing doctor takes more responsibility and liability than usual.
Matt says: “When the law changed, two children that had special licences received prescriptions. But Charlie’s would be the first NHS prescription since the law changed so in that regard it would be a landmark case.”
Cambridge University Hospital NHS Foundation Trust, which guides other local trusts on epilepsy issues, says that guidelines from NICE prevent it from prescribing medical cannabis. But NICE claims it does not prevent doctors making prescriptions where clinically appropriate.
“So our argument is asking whether this is a clinical decision or is it just a ‘no’. Personally, I think the trust appears to be giving us a blanket ‘no’ rather than looking at the individual case. Despite what the law says about clinical decisions, there is no clinical decision being made.
“I’ve spoken to clinicians that say they would prescribe if they could but I think there is a feeling that if they step out of line, their trust will block it anyway.
“Also, a lot of clinicians are prescribing it privately, just not on the NHS. So why is it fine for children to take it privately but for the NHS we need all this extra evidence?
“At the same time, no-one in the NHS is saying this drug is dangerous. At no point, since Charlie’s been on it, has anyone said it’s dangerous and he shouldn’t be on it.”
The family is taking considerable risk in pursuing legal action.
While they have received some legal aid, they would be liable for the legal costs of NICE and the trust, which Matt estimates could be upwards of £20,000.
Over £11lk has been donated to the family via the legal fundraising platform Crowd Justice to help them in the battle ahead.
Lawyer Nusrat Zar, of Herbert Smith Freehills, stated in the Mirror newspaper that the aim of the case is to “ask the court to rule that the refusal to offer the drug is unlawful”.
She explained: “Legally, a decision doesn’t oblige the hospital to give the drug. But public bodies like the NHS are good in taking on board such decisions.”
At the time of writing no court date has been set, with COVID-19 continuing to cause havoc to all such processes.
In the meantime, Matt and his wife are supporting other parents in navigating their own access to medical cannabis.
“We understand the processes and laws now and pass everything on to other families about what we’ve learned in fighting to get the medicine.”
Donate to the Hughes family and read their full story here.
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From catwalks to cannabidiol – a former fashion model’s journey to CBD discovery
Model Kelly Brooks was forced to give up her dream career when Lyme disease left her unable to get out of bed. She tells Cannabis Health how she is rebuilding her life with the help of CBD.
A few years ago Kelly Brooks, 27, was living her dream on the catwalks of New York, modelling for Jean-Paul Gaultier and gracing the pages of Vanity Fair, Glamour and Italian Vogue.
Now her life couldn’t be more different. In 2018 she moved to the UK with her husband Layton and the couple are looking to start a family in their hometown of Ringwood, Hampshire.
Kelly is the operations manager of a five-star spa and teaches barre fitness classes to those living with an illness or injury.
You would never know that she has endured years of symptoms such as agonising joint pain, extreme fatigue, tremors and at her worst being unable to walk, as a result of chronic Lyme disease.
Growing up in Maine in the United States, Kelly first felt something was wrong in her early teens. She went from being an ‘active, healthy kid’ who was hardly ever sick, to experiencing periods of blackouts and vomiting.
Medics put it down to everything from a sodium deficiency, fibromyalgia and Epstein–Barr virus, to depression, an eating disorder and even attention-seeking. It took almost a decade for doctors to diagnose the tick-borne disease. Even when things took a turn for the worse at the age of 17.
“All of a sudden I was completely exhausted. I went home from school one day, got into bed and didn’t get out for weeks,” Kelly says.
“I had joint pain, migraines and extreme exhaustion – I was sleeping about 20 hours a day. I wish they had taken me more seriously at that point.”
A year later, aged 18, she was eventually tested for Lyme disease at the suggestion of a doctor who happened to be a family friend. It came back positive.
Despite her diagnosis, Kelly was determined to follow her dreams and moved to New York to go to study fashion buying. When a chance opportunity to help out a fellow student ended up launching her modelling career, she ended up quitting college to focus on it full-time.
She was living the dream, walking in runways shows at New York fashion week, working with household brands such as Bumble and Bumble and travelling across the world to Paris and Milan. But she was secretly struggling to balance a blossoming career with her crippling health condition.
“At first I could push through it and rest when I got home, but over the years it became really difficult, especially dealing with the pressure of losing weight – I wasn’t eating enough and was exercising too much – and was struggling to stand for long periods of time. I did faint at a couple of jobs,” says Kelly.
She got into a cycle of treating the Lyme disease with strong antibiotics for several weeks and before returning to the same lifestyle and running herself into the ground.
But as her symptoms became more neurological, leaving her struggling to walk and lift her legs, her then-boyfriend Layton gave her a much-needed wake-up call.
“One evening I came home from doing runway shows at fashion week and I completely collapsed. I couldn’t walk across the room.
“Layton said ‘ I can’t watch you keep doing this to yourself, you need to stop’,” she says.
“It was really hard to give up, I felt like it was so unfair, but by the end, I just wanted to do anything to feel better.”
It was a fellow Lyme disease patient in New York who introduced Kelly to CBD.
“I’ve never really done the herbal route, so I was sceptical,” she admits.
“They sent me a cream and I put it on the joints that were hurting me the most and within a few minutes, the pain had subsided.
“I couldn’t believe how much it helped because I’d had prescription medication for joint pain and nothing had worked but CBD did.”
When the couple moved to the UK to be closer to Layton’s family, the CBD industry was just in its infancy. She struggled to find a good quality, reasonably priced product and was confused by a wealth of conflicting research.
Layton took matters into his own hands to help his wife and reaching out to a colleague with previous business experience, Claudio Santos, they founded CBD Shopy.
Now a leading online retailer, the website aims to help customers find reputable and high-quality products, while also educating people about CBD.
Claudio Santos said: “Studies have indicated that CBD has anti-inflammatory properties and we’ve had numerous customers giving feedback that CBD oil and cream has helped them with joint and muscular pain.”
And Kelly is its biggest advocate, claiming CBD has allowed her to rebuild her life.
“I use the CBD cream on all of my joints every day and currently don’t have the constant pain,” she says.
“I still have some symptoms and when I overdo things it takes me longer to recover, but I’m quite good now at managing how much I can do each day.”
CBD has helped with her mental health too, easing symptoms of anxiety and insomnia.
“I was formerly on sleeping medication, but now I use CBD before bed and no longer have to take it,” she says.
“I do still suffer from depression and anxiety but I have pretty good days where I’m at 80-85 per cent. I even get some 95 per cent days.
“I’m really happy with where I am now.”
To find out more visit www.cbdshopy.co.uk
“I’m not a zombie anymore”: Why this mum-of-five is speaking out about her medical cannabis use
Mum-of-five Kayleigh Compston is the first Scottish patient to be legally prescribed medical cannabis as part of Project Twenty21. Now she’s speaking out to tackle the stigma.
“Medical cannabis has one hundred percent made me a better mum,” says 26-year-old Kayleigh Compston.
A mum-of-five, she has recently become the first person in Scotland to be prescribed cannabis legally, having enrolled in Project Twenty21, the pioneering study led by Dr David Nutt.
Kayleigh, who has fibromyalgia and functional neurological disorder (FND), which cause chronic pain, paralysis and muscle spasms, had spent years being prescribed heavy opiates such as morphine to manage her symptoms.
But now she says medical cannabis has allowed her to feel human again.
“There have been no negative side effects from cannabis whereas with pharmaceuticals there were many,” says Kayleigh, who lives in the Shetland Islands with her partner Matthew Ross and is mum to Tyler, nine, Teegan, eight, Tommy-Lee, seven, Teejay, five and Tianna, four.
“The issue with opiates is that your body gets used to it, so the doses get higher and higher and stronger and stronger.
“Now I’m not a zombie anymore, I lead a much more normal life.”
Kayleigh, whose conditions have been known to leave her bed-bound, continues: “It doesn’t take away the symptoms, but it helps you to forget about them and it relaxes my muscles spasms.
“It’s actually made me feel human and I’ve been able to get on with doing things for my kids,” she continues.
“It’s nice to be able to play games with them and drop them off at school – things which I couldn’t do when I was paralysed in bed for months.”
Kayleigh says she is also less reliant on Matthew now, who is her full-time carer.
“It’s hard work with the kids and I still have to rely on him for things, but much less so.”
And the cannabis – which she grinds and vapes in a herbal vaporizer eight times a day – also helps relieve her symptoms of anxiety and PTSD.
Matthew, 25, is also enrolled in Project Twenty21 and previously had a private prescription for medical cannabis to help manage his Multiple Sclerosis (MS).
The project is aiming to enrol 20,000 patients by the end of 2021, creating the largest body of evidence for the effectiveness of medical cannabis. Its goal is to demonstrate to policymakers that medical cannabis should be as widely available, and affordable, as other approved medicines for patients who would benefit from them.
Project Twenty21 is covering the costs of a private prescription up to £150 per product per month for those with Anxiety Disorder, Chronic Pain, MS, PTSD, Substance Use Disorder (as a harm reduction strategy) and Tourette’s Syndrome and researchers will collect data about their quality of life for up to two years.
It is hoped that the findings will make a powerful case for NHS funding.
Despite first trying weed as a curious teenager, Kayleigh never thought about it medically until a few years ago and admits to self-prescribing in an attempt to find an alternative to opiates.
Now they have legal prescriptions, the couple are advocating for wider access to medical cannabis and are keen to speak out to help change attitudes in their home country.
“I feel like the Shetland Islands are quite behind anyway, and some of the older generation still have outdated views,” says Kayleigh.
“There is still a stigma, but I think people need to open their eyes and realise that all the evidence is out there as to how much it actually changes people’s lives.”
“Like any medication, it can have side effects but it’s not what people say it is.”
Kayleigh is starting her education close to home, by being open with her children about her prescription.
“My older three children know what my medication is now. It’s about educating them that cannabis is a medication, just like any of the others I have taken.
“I wanted them to know before they get told that it’s ‘bad’.
She adds: “The children have seen how much better quality of life I have now.
“They know first-hand how much it has helped mummy.”
For more information about Project Twenty21 visit www.drugscience.org.uk/twenty21-is-now-live
Save your HRT, give me CBD
Going through the menopause hit Jenny hard, with an array of side-effects leaving her exhausted and wanting to hide from the world. Here, she shares her story of how CBD is helping her to rediscover the fun-loving woman she used to be.
As a woman in my 50s, it’s perfectly normal to be going through the menopause. But while I’ve always known it was coming, I had never appreciated how bad it would actually be.
Menopause, as all the women’s magazines tell you, happens to us all. A few hot flushes, bit of difficulty sleeping, stick on an HRT patch and you’ll get through.
For many that may well be the case, but the reality for me has been so much worse.
The sweating at night has to be one of the most awful parts. Waking up night after night, dripping in sweat, the bed sheets drenched, has become the normal over the past 18 months.
And once I’m up during the night, I can’t get back to sleep. Regularly I get up at 3 or 4am, and go downstairs to watch whatever appallingly bad TV shows are shown at that hour.
I’ll then find myself falling asleep during the day if I’m at home, which I feel is me slipping further down the slope into old age.
Hot flushes happen all of the time. And when we say hot, it’s not just a case of taking your cardigan off, the heat is incredible.
Regularly I’ll be out at lunch, sitting in just a camisole while everyone else is in jumpers, fanning myself down with whatever beer mat or menu card comes to hand.
I may as well just have Menopausal Woman written on my top as it’s so obvious.
I didn’t think the menopause would affect me so much, and I also didn’t expect to cope this badly with it.
I have always had a fantastic social life, going to dinners and lunches several times a week, and I love getting dressed up.
Since the onset of my menopause, with the tiredness and the unexpected hot flushes in particular, I’ve lost my enjoyment of it all.
The worry you’re going to fall asleep at the dinner table (that has happened before, but thankfully in my own home) or aren’t going to feel great when you’re there has seen me decline so many invitations.
Friends are asking whether I’m OK, whether I’m ‘me’, as this is so out of character.
And in truth, over the last 18 months, I do feel like I’ve lost my old self to quite an extent – although in the last few weeks, I do feel like I’m getting her back thanks to a chance discovery while online shopping.
While browsing for some new shoes, I hadn’t felt like going out that day, I came across one of those pop-up adverts for CBD.
I knew it was associated with cannabis but didn’t really know much more than that, but I continued to shop for heels and forgot about it.
That night, again, I couldn’t sleep. Having watched three back to back Judge Judy episodes, which is surely enough for anyone, that CBD advert came into my mind again.
I’d read a lot about cannabis over the past few years and the wonderful effect it had had on so many children.
I’d never had a personal interest in or connection to cannabis, but the fact people in desperate need had been denied it was something I believed was wrong.
For some reason, I decided to search CBD and menopause. HRT for me had been rubbish, so it was worth some investigation at least.
To my astonishment, there were so many stories about the strong connection between the two, the many benefits there could be, how CBD could help with so many symptoms.
I couldn’t believe it. I’m not sure I believe in fate, but there was a reason that random advert popped up on my shoe site that day.
I bought some CBD in my local shopping centre – it’s perfectly legal and readily available, which is something I hadn’t realised.
I thought it must have been a banned substance because of how it’s spoken about in whispers.
It’s not something I feel I could tell my friends I’m using as I’m not sure how they’d react. But discovering CBD has been the most fantastic thing to happen to me in a long while.
The past few weeks have been so much better. I have enjoyed a good sleep for the first time since my menopause symptoms began and am sleeping through the night again.
I’ve also felt so much better in myself, like I want to make an effort and put my make up on and put some nice clothes on.
If I had anywhere to go at present, I’d love to put my heels and best dresses on and get back out there. While I still have hot flushes they haven’t been anywhere near the extent they were before.
This is probably due in great part to the fact I’m sleeping, and sleep is at the root of so much in terms of quality of life, but CBD is said to have mood lifting properties, so that could well be another benefit.
Nothing else in my routine has changed apart from my use of CBD so I can only conclude that is the reason.
The difference in only a few weeks has been a great surprise. I do feel like I have the confidence to start accepting those invitations again.
The COVID-19 lockdown has come at a good time for me, as CBD is doing its thing for me, and I’m getting myself back to a position where I feel like ‘me’ again.
There is undoubtedly a taboo around the use of CBD, which I think is unwarranted.
I think we are far too closed-minded as a society and we don’t talk about these things which seem a bit awkward.
Even trying to discuss the menopause with some people is a conversation-changer in itself.
I do think I’d get some difficult reactions if I talked about my CBD use, which is a real shame.
I’d love to share my CBD secret with my friends, and perhaps I will at some point. Or perhaps they’re all already using it anyway.
Jenny did not wish to give her full name.
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