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‘I thought I’d won the lottery – it was amazing’

When Elaine Levy discovered medicinal cannabis for her daughter Fallon, 25, their lives were transformed immeasurably. Ensuring this change is irreversible comes at a heavy cost, however, as Elaine tells Cannabis Health.

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For most mums, their child’s first day at school brings a mix of pride and trepidation.

For Elaine Levy, it was “the worst day of my life”.

Four-year-old daughter Fallon had previously been affected by convulsions caused by fever. But when the school called to say Fallon was shaking, without any sign of her being hot, alarm bells rang.

She was sent home and then suffered a rapid of succession of seizures. She was rushed to hospital by ambulance and later moved to Great Ormond Street.

“We were told that she had a disorder which we now know to be Lennox–Gastaut syndrome, which is intractable epilepsy.

“We didn’t know at the time that what she had couldn’t be cured. There’s a certain percentage of the population that have epilepsy that can have their meds and live a normal life. But Fallon’s was one of those conditions that could never be controlled.”

A “myriad of anti-epilepsy drugs followed”, some of which worked to a point.

“She was always having seizures in spite of the meds, just not as many and without ending up in hospital all the time.

“But really she had no quality of life. The sedative drugs they had to resort to in the end were making her zombie-like. Her head would be forward, she’d be drooling at the mouth and she couldn’t eat properly.

“She was eating mashed potato for years because she was so doped up that she couldn’t actually really chew.

“We’d take her out for an hour or so and then she’d end up having a seizure and we’d have to take her home. I think I spent most of her first 10 years in bed with her, worried that she was going to drop again. So it was a pretty bad time.”

Years later, Elaine reflects on the impact Fallon’s condition had on her other two children.

“I realise now that they couldn’t go on holidays in the heat because Fallon couldn’t handle it. Basically their freedom and holidays were all stopped because of Fallon. They were side-lined, which I didn’t realise at the time.”

The impact of the various anti-epilepsy drugs on Fallon was of great concern to Elaine.

“I remember seeing a neurologist who said ‘oh my God, we need to get her off this because its toxic’. There are all these drugs given to children that, although licensed, can cause so many problems and side-effects.”

One possible solution is vagus nerve stimulation (VNS). A small implanted device similar to a pacemaker sends electrical impulses to the brain to reduce the number and severity of seizures. Fallon tried two of these.

“We’d heard reports that it could stop the seizures completely and so we were very excited at the time. Maybe it reduced some of her seizures but I don’t think it worked well at all.”

The device still implanted in Fallon’s chest today is now redundant, and has been ever since her mum discovered medicinal cannabis.

“She’s 25 now and started taking medical cannabis about two years ago. When I first heard about it, I spoke to two neurologists who both said they’d seen amazing results from patients who had accessed it independently.”

She contacted Hannah Deacon, the mother of Alfie Dingley, a severely epileptic boy who was making headlines at the time following his treatment with medical cannabis in Holland.

​“Hannah suggested finding a doctor in Holland willing to prescribe it. I wasn’t going to just go down a back street like some of the adult patients the neurologists mentioned.

“I found one and was astounded that they said I wouldn’t need to bring Fallon if I had her notes. But I was so worried about getting stopped and arrested so I thought it best to go over with Fallon so if I did get stopped, they could see my daughter with epilepsy, and could see that it wasn’t for me.

“I took her across in the July. It was a really hot day and, I have to say, it was a nightmare. From beginning to end she was having seizures, falling down in the street in Amsterdam, in the hotel, at the airport.

“One minute she’d be walking with me and the next she’d be down, with people running around trying to find her a wheelchair because she wasn’t coming around.

“Anyway, we got it and walked through [the airport] with it. My neurologist said he didn’t know a lot about it but advised us to treat her slowly. And it was amazing.

“Within three weeks we started seeing seizures reducing. I remember the carers ringing me up and saying she hadn’t had any seizures that day. Then one day I thought I’d won the lottery – I couldn’t get hold of her and assumed she’d been taken to hospital.

“But actually she’d been out all day and all evening. It was unbelievable. Before the cannabis she was having seizures every day, up to around 200 a month. She could fall over in the toilet and bang her head if you weren’t watching her. But in the last week, for example, she hasn’t had any.”

Although medical cannabis was officially legalised in the UK as a prescription medicine in November 2018, access on the NHS has not yet opened up.

Despite a supportive neurologist trying to help navigate the ambiguous, bureaucratic process of seeking access to the treatment, Elaine was unable to secure a prescription.

Subsequently, she was among a group of campaigning parents who spoke to the health secretary on a visit to Westminster last year.

“It makes me so angry that nothing has been done yet [to open up access to cannabis medicine]. Matt Hancock said, ‘if your neurologist believes there’s nothing else for Fallon then I need to know about it’.

“My neurologist absolutely supported her 100 per cent, he filled out the form for the individual funding request but they turned it down because it wasn’t ‘exceptional needs’. It’s so strict and rigid that 98 per cent of the population that need it get turned down.”

Fallon takes a product called Bedrolite, which contains nine per cent CBD and less than one per cent THC.

Elaine makes a monthly visit to Holland, spending up to £2k per month, plus the cost of flights, on the medicine.

The financial toll of this arrangement saw Elaine forced to put the family home up for sale in September last year.

At the time she estimated that she had spent over £30,000 on Fallon’s private supply. The family has also relied upon crowdfunding.

“I don’t know if we’re ever going to get an NHS prescription so I can’t plan and say, in a month, we’re probably going to get one.”

The imminent house sale and the prospect of a subsequently downsized life for Elaine’s family is of course a sacrifice worth taking, given Fallon’s remarkable transformation.

But, as Elaine and many fellow parents affected by epilepsy believe, it is a completely unnecessary sacrifice caused by the government’s inability to react to cannabis medicine’s resurgence as a potential life-saving treatment.

And Elaine, who will make another protest visit to Westminster in February with campaign group End Our Pain, is not encouraged by recent developments.

In December it was announced that the CBD drug Epidyolex would be fast-tracked into the NHS as a prescription treatment, including for children with epilepsy. Elaine believes the move is too restrictive, focusing only on a product that will not work for all epilepsy patients.

She would like to see other products, including those with THC and made from whole plant extract containing other potentially beneficial compounds, also considered.

She is, however, optimistic about the ground-breaking study recently launched to monitor 20,000 patients through cannabis medicine trials.

Professor David Nutt is leading the two-year trial with the aim of creating the largest body of evidence on the plant’s medicinal qualities in Europe.

Through his research body Drug Science, the ProjectTwenty21 initiative was launched in partnership with the Royal College of Psychiatrists. It is hoped that the trial will help to persuade policymakers to help open up access to medical cannabis.

Elaine is hopeful that Fallon can be part of the trial. In the meantime, she continues to be amazed by the difference she has seen in her daughter since she discovered medical cannabis.

“Pre-medicinal cannabis, Fallon would have to take 10 to 12 pills in the morning and the same at night. Because so many of them were sedative, she couldn’t swallow a lot of them, so we’d be putting them in yoghurts and anything else we could do to get them down – and none of them really worked.

“She’d start her day taking all these pills, we’d get her up and ready and tell the kids we were all going out. But if she got too excited, she might have a seizure – being too happy could trigger a seizure, just like being upset could too. Her epilepsy was emotionally-led, as well temperature and other triggers.

“So I used to end up in bed with her because she’d be safe. That was Fallon’s life. If we made it out for a meal, we’d take a wheelchair and sit in the booth in case she keeled over. We could never finish and meal, we’d soon be saying ‘time to go kids’ and we’d be back in the car. She couldn’t really go out with carers because it would be too much of a worry for them.”

In contrast, Fallon’s life now extends far beyond these restrictive experiences.

“She still does have seizures but there are so few and she’s not standing up one minute and dropping down to the floor the next. She actually walks alongside me now.

“Obviously, I’m still nervous because I’ve had 2o-0dd years of her having drop seizures, but I’m slowly getting used to the fact that she’s going to be able to come out all day or for half a day and be fine.

“She now goes to the cinema, to a club to play with friends and singing – she does all sorts of things that she couldn’t ever do. Her life is absolutely transformed.”

Fallon, whose special needs require 24-hour care support at her independent living flat, is also becoming much more engaged and interactive with her mum, says Elaine.

“It’s amazing. I won’t tell you what she says to me now,” she laughs.

“She’ll always be vulnerable because she has learning difficulties, but her IQ is definitely changing. When she was on sedatives, she couldn’t string a sentence together but now her intellect has risen as she’s dropped a lot of the pills.

“She’ll have a chat with you and her brain’s more active. The more seizures you have the more it affects your brain so she’s obviously having less, she’s more alert, and with it she gets a bit bolshie now!”

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Case Studies

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.

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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.

Id love to share my CBD secret with my friends, and perhaps I will at some point. Or perhaps theyre all already using it anyway.

Jenny did not wish to give her full name.

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Case Studies

Why we’re taking NICE to court over cannabis denial

The parents of Charlie Hughes have seen cannabis medicine transform their two-year-old’s life. They are now gearing up for a legal battle to help them and other families access the treatment on the NHS.

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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.

Cannabis Health is THE UK magazine covering cannabis medicine and wellbeing from every angle. It is affiliated with the Medical Cannabis Clinicians Society and lists campaigner Hannah Deacon and leading expert Professor Mike Barnes on our editorial panel. For a limited time only, we are offering a free – absolutely no strings – annual subscription to the quarterly print title. You will  receive four issues, delivered with discretion to your address – with no hidden fees or obligation to pay beyond that. To repeat, this is a 100% free promotion available to the first 100,000 sign-ups.

Claim your free subscription now!

 

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Case Studies

CBD oil and fibromyalgia – a case study

Fibromyalgia is a neurological condition where inappropriate nerve signals produced in the brain cause widespread pain, aching, tingling, burning, throbbing and stabbing pains…

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Sufferers experience up to five times the pain of non-sufferers. Sometimes the slightest touch is agony. There are many other symptoms that come along with fibro including chronic fatigue, muscle spasms, blurred vision, ‘brain fog’, IBS, sleep problems, migraines, poor balance, shortness of breath, restless legs, etc.

The cause of fibromyalgia is unknown. It’s believed that people who have this condition process pain differently, and that the way their brains recognise pain signals makes them overly sensitive to touch and other stimuli.

Some people believe fibromyalgia is a new condition, but it’s existed for centuries. The disease can affect anyone, including children, but it’s more common in adults. Women are diagnosed with fibromyalgia more often than men.

There is no cure for fibromyalgia, but medication, some lifestyle changes, and natural remedies can help people manage the symptoms. Research is ongoing, nonetheless, CBD remains a popular choice and there is little doubt that an increasing number of people are turning to CBD oil to help symptoms of fibromyalgia.

The pain-relieving effects of CBD may be explained by the ways that this substance affects the brain. It may interrupt the nerve pathways that send signals of pain between the brain and the body.

The anti-inflammatory action of CBD appears to reduce heat and swelling around injury or disease which, in turn. would reduce pain.  It is suggested that a lack of endocannabinoids — neurotransmitters that bind to cannabinoid receptors — may be at the root of chronic pain syndromes, including migraines and fibromyalgia. Taking CBD may correct this deficiency, explaining the compound’s success in alleviating chronic pain.

Fiona’s story

Life altered dramatically for Fiona Henry (pictured above) when she started to experience symptoms of fibromyalgia. As her world was turned upside down in so many ways by this debilitating condition, and as she battled to get through each agonising day, she desperately sought help from anywhere she could find. Here, she shares her story; the struggles, the torment, the fears … and her gratitude for the eventual solace she discovered through taking CBD.

Before the onset of fibromyalgia, I was a fit person, always ‘on the go’, enjoying time at the gym and a keen runner, even participating in The Great Northern Run.

‘It felt like I had cement running through my veins.’

My husband had to come and carry me out of work as I could no longer lift my arms and legs, and I couldn’t speak.

It felt like I had cement running through my veins and my eyelids felt like they had great big weights on them.

Once the illness took over, I initially endeavoured to continue with my career as a senior beauty therapist, trying to push through it, yet this only made the symptoms worse and eventually, when I was so fatigued that I couldn’t move, I was forced to give up the job I loved.

‘I felt as though I was trapped in my own body. It was terrifying and incredibly isolating.’

The loss of my career was devastating. The impact on my life was immense as everything I knew and looked forward to before now had to change.

My husband became my carer, something he had to deal with on top of working in two jobs, taking on all the roles that I had always managed, like food shopping, cleaning and cooking.

I couldn’t look after myself at all. At my worst, I was completely bed-bound, temporarily paralysed, unable to tolerate the smallest amount of noise and light.

I felt as though I was trapped in my own body. It was terrifying and incredibly isolating.

I could no longer go out dancing all night with my friends like I used to. I’ve gone from running half marathons to not being able to walk more than 100 yards, using a walking stick and recently needing a wheelchair to get around.

I have two toy poodles who are my life but the joyful walks together became a pleasure of the past. Instead, I would strive to just cross the road and sit on the bench so that I could watch them play.

I’ve always been the one busily looking after everyone else but now I had to rely on others for help, something that I struggled to adjust to and always found difficult to accept.

It was heart-breaking for me, not being able to make a fuss of people like I used to, feeling guilty for not being able to help out and do things in the way I used to.

When I was finally diagnosed it was a sense of relief. I had known deep down that I had fibro for a while and this gave me the opportunity to be able to manage my symptoms properly.

I was diagnosed with M.E first and then I developed the pains and was also diagnosed with fibro.

I have to rest as much as possible, between little bouts of activity, conserving the energy that I do have for managing my symptoms and trying to get better.

I have learnt to listen to my body as trying to ignore it has only made things tougher. I am pacing myself and accepting this new norm, whilst still finding ways to enjoy myself.

After finding out that I had fibromyalgia, I joined a few support groups on Facebook and alternative therapies were often mentioned. Living with pain and fatigue is something I have sadly become accustomed to, and I was willing to try anything that might help me. I began to consider taking CBD.

Finding Hapi Hemp was a bizarre coincidence! My aunt was in Cambridgeshire visiting her son and his wife and through conversation, I discovered that she knew one of the Hapi Hemp business owners!. I couldn’t believe it, as I had literally been looking at their website for the past week!

 ‘I couldn’t imagine life without CBD oil!’

CBD changed everything for me. It is not a miracle cure but it really does make such a huge difference to my ability to manage the condition.

I have become a CBD fan in every which way – taking oral drops and drinking the CBD tea, I also use the CBD bath salts and massage oil. And the CBD roller goes everywhere with me!

CBD oil helps with every single symptom I have; I sleep better and wake up more refreshed. It eases my pains, gets rid of tinnitus, helps lessen migraine attacks, calms me down, and got rid of restless leg syndrome.

Overall, I would say that I just feel more alive! I really can’t imagine life without Hapi Hemp CBD Oil!

 

Cannabis Health is THE UK magazine covering cannabis medicine and wellbeing from every angle. It is affiliated with the Medical Cannabis Clinicians Society and lists campaigner Hannah Deacon, leading expert Professor Mike Barnes and prominent doctor Dani Gordon on our editorial panel. For a limited time only, we are offering a free – absolutely no strings – annual subscription to the quarterly print title. You will  receive four issues, delivered with discretion to your address – with no hidden fees or obligation to pay beyond that. To repeat, this is a 100% free promotion available to the first 100,000 sign-ups.

Claim your free subscription now!

 

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