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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.

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Case Studies

Patient Voices: Gillian – “I can’t talk to other mums about cannabis in the playground”

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Medical cannabis patient, Gillian Flood
Medical cannabis patient, Gillian Flood

Access to medical cannabis has allowed Gillian to be a better mother to her six children, but despite having a legal prescription she is still fearful of speaking out and facing backlash.

After barely being able to move off the sofa due to debilitating chronic pain and the side effects of prescription drugs, Gillian Flood can drop her children off at school again. 

She no longer has to rely on her husband to take care of their six children – several of whom have additional needs – and can give them the routine they need.

“I can get up and take my kids to school. I can make them dinner and spend time with them doing things we enjoy,” says the 39-year-old.

“If I was having a flare, my kids wouldn’t understand that I wasn’t in control of that and it was really difficult, whereas as now it’s all manageable.

“I’m not just lying there too sore, or suffering the effects of the tablets I was on. Now even when things are difficult, it’s easier.”

Gillian was prescribed cannabis to manage the symptoms of fibromyalgia in 2020. It has reduced her pain and nausea so can get out of bed in the morning, and also helps with the symptoms of PTSD and depression.

“Even if I’m still in pain, I feel calmer and more in control. I know that I’ve got this helping hand,” Gillian explains.

“It stops the nightmares, that’s the biggest thing. I can sleep through the night and not wake up sweating and shaking – and if you can get a good night’s sleep it makes the next day a lot easier.

“I can get pleasure out of life, it means so much to me that finally I have something that not only improves things but doesn’t have any of the terrible side effects I have previously suffered on other medication.

She adds: “It may not be perfect but it’s a whole lot better than what it was.”

Gillian has experienced mental health issues since she was a teenager, but after her children were born her health deteriorated. 

It took six years of living with unexplained, debilitating pain – with doctors blaming it on the idea that she had “strained” her body by having children – before she was diagnosed with fibromyalgia in 2018. 

“I was getting all kinds of crazy pain, one side of my face had dropped and I was completely numb down one side of my body, I knew there was too much going on for it just to be a result of having children,” says Gillian.

She was initially prescribed gabapentin, which left her with “horrific” side effects.

“I felt like I was drunk all the time, I was staggering about and my speech was slurred,” she says

“Then I was on pregabalin but that didn’t work either and turned my brain to mush. It was really hard to think or concentrate, so eventually I came off everything.

Gillian continues: “I was in pain and felt sick all the time and I was either in bed or on the couch. I couldn’t play with the kids and my husband was having to do everything.”

She had previously raised the idea of cannabis with her doctor but had been told it was “not helpful” and might actually make her mental health symptoms worse.

“They said they wouldn’t treat my mental health problems if I was going to take cannabis,” she recalls.

“It meant it wasn’t an option for me, even though I thought it would work, because I’ve got kids in the house I felt a lot of pressure to do things legally.”

Although there were no medical cannabis clinics in Scotland at the time, Gillian researched getting a prescription online and found the process relatively straightforward. However, the costs associated with having to fund it privately is still a struggle for her, despite them slowly coming down.

“It’s challenging to afford it,” she says. 

“Some people have an attitude of ‘well it’s okay for you’ but we’re all making sacrifices, it’s not coming easy to anybody. 

“For the majority of us we have to cut things from other areas in our life to be able to afford it or borrowing money and running up debt.

“Yes, you get access to consistent medicine and see a doctor which is great, but another part of it is just because you don’t want to be breaking the law and that shouldn’t come at such a high cost.”

Gillian came across the patient-run advocacy group PLEA (Patient-Led Engagement for Access) last year, after looking for other cannabis patients she could connect with.

“I didn’t know any other patients and it was hard to find out about the different treatments,” she says.

“If you get put on gabapentin you can go online and read about millions of patients who are on it and learn about their experience.”

PLEA was founded in 2020 and is run voluntarily by a team of experienced patient advocates to challenge the inequalities in access to cannabis-based medicinal products and improve things for patients. 

“It’s helped massively to know that there are other people in the same position.

“People don’t talk about cannabis, it is frowned upon,” Gillian continues.

“I can’t talk to mums about it in the playground, but it’s normal to say at 11am ‘can we get the wine open yet?'”

Despite those close to her having been supportive of her prescription, Gillian still fears the stigma from people who aren’t aware of the medicinal benefits of cannabis, particularly other parents at the school gates.

“My family are all supportive, they’re just glad I’m feeling a bit better and even some friends who were anti-cannabis have actually changed their attitudes once they learned about the fact that it could be a medicine,” she says.

“But even though I have a prescription I wondered whether I should remain anonymous for this interview because I don’t want people to think bad of me.”

Gillian is now a member of PLEA’s Patient Working Group, which is helping to ensure patient’s voices are heard as the cannabis industry develops and access improves, which is something which can’t come soon enough for her.

“I know things take time, but I would like cannabis to be seen as more of a first line treatment rather than a last resort,” adds Gillian.

“I don’t blame the doctors, they don’t have the knowledge or are just going on what they’ve been told, but it’s wrong that they can prescribe these tablets that are really harmful and addictive, when there’s another option.

“If things had been different, I could have saved years of my life when my kids were young that I will never be able to get back.”

 

In our Patient Voices series, we’re sharing the stories of members of PLEA’s Patient Working Group.

Read Eppie’s story here 

Find out more about the PLEA patient working group here & visit pleacommunity.org.uk  for further resources 

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Case Studies

Dad-of-three says cannabis helped him beat terminal cancer

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Scott Davis Life Oils
Scott Davis, used cannabis in his battle to beat cancer

After being diagnosed with terminal cancer, Scott Davis started taking cannabis oil. Despite being given 12 to 18 months to live, two-and-a-half years later the tumour has “disappeared”. 

In the summer of 2018 at the age of 38, Scott Davis started experiencing stomach cramps and loss of appetite. When he started losing weight without explanation, he decided to visit his doctor.

Over the following weeks, the father-of-three was in and out of hospital for a number of inconclusive tests and consultations until his doctor diagnosed him with inoperable colon cancer.

As a rare and aggressive form of cancer, his doctor informed him that he had between 12 and 18 months to live.

With his wife pregnant and due to give birth in three months, the news was a horrendous blow for Scott and his family.

“I was getting stomach cramps and things like that, but the last thing you think of is cancer,” Scott told Cannabis Health.

“They got me in the room that day and gave me the news. They said it was terminal and there was nothing they could do.”

Scott was in a state of shock. He couldn’t believe that he could go from being completely fit and healthy to being diagnosed with a terminal illness within a matter of months.

“You’re in a daze, it’s like a bomb has gone off and you can hear the ringing but everyone else around you are just getting on with their lives while you’re still sat there dealing with the aftermath,” he said.

“It takes a while for it to sink in.”

Despite not having any treatment options available to him, Scott didn’t lose hope and although he was told to prepare for what could be his final Christmas, he remained optimistic.

“I’ve never thought ‘oh God, this is it, I’m cooked’,” Scott said. “I always thought there must be something; there had to be something.

“‘Maybe I could be lucky’, I thought. Maybe I could be one of these people that uses these alternative methods and finds the key to recovery and goes into remission.”

His Dad was the first person to suggest cannabis.

Later, a nurse at the hospital handed him a piece of paper reading ‘Rick Simpson’, a prominent Canadian cannabis activist who reported that cannabis oil enabled him to recover from skin cancer.

Scott called his friends and a day later they were at his bedside with CBD and THC oil.

Before his course of palliative chemotherapy began, Scott started taking CBD and THC at high doses; he said he did not have time to build up his tolerance.

“The only reason why I went hell for leather is because I’ve got three children and a beautiful wife. I’ve got a lovely life and I wasn’t ready to leave it,” he said.

Scott was also put on a course of morphine and Tramadol to combat the pain. With the combination of powerful opioids and strong cannabis oils, Scott said he looked like a “zombie” to visitors, but within a matter of weeks he noticed that he was needing less and less pain medication.

Scott Davis cancer

Scott Davis during his treatment for inoperable colon cancer

As he gradually came off the morphine and Tramadol he found that the CBD and THC kept the pain at bay without the negative side effects of opioids.

“The more I started taking [cannabis oils], the fitter I started feeling,” Scott said.

“At one point I couldn’t even walk around my hospital bed without getting out of breath.

“My main goal in the hospital was to have a shower on my own and not use the disabled seat.”

After six sessions of palliative chemotherapy, Scott was allowed home to see his daughter being born and spend what he thought could be his last Christmas with his family.

The palliative chemo shrunk Scott’s tumour by 50 percent, offering a glimmer of hope for him and his loved ones.

Several months later, he received more good news, when doctors told him that the tumour was stable and contained, and they could keep it under control for up to ten years. But Scott was determined to be cancer-free.

“I couldn’t know that I had something there even if it was stable and contained,” he said.

“That wasn’t good enough. I was only 38, I didn’t want to think that I only had until 48 – that’s still young.”

Scott continued taking CBD and THC along with the other medications and supplements that were helping him beat his battle with cancer, including vitamin D, vitamin B17 (apricot seeds), immune-boosting mushrooms and fenbendazole, an anti-parasitic veterinary drug that has gained attention for its potential to inhibit tumour cell growth.

At the beginning of 2020, 16 months after his course of palliative chemo, Scott was given the remarkable news that the cancer was in remission.

“For them to say that the tumour was there but showing no [signs of] active cancer was an incredible moment,” he said.

“It was an incredible feeling to know that everything I’d read about the things that I’d been taking had actually started to work; it had actually benefited me.”

Since then, Scott says the tumour has completely “disappeared”, leaving nothing but scar tissue behind. As his test results have continued to show improvement, he says he is beginning to enjoy life again.

“With cancer, unfortunately, you’re always waiting for the next test or the next scan,” Scott continued.

“But as they go on and I get more positive results and my blood tests are all coming back better than average, it starts giving you the confidence to relax a little bit more and enjoy life again. You haven’t got that weight on your shoulders all the time.”

Scott Davis cannabis

Scott Davis’ daily doses of CBD, THC and other supplements

Although he believes cannabis medication played a vital role in his recovery, it was the synergy between cannabis, chemotherapy, fenbendazole and the numerous other supplements he used that allowed him to beat the disease.

“I’ve never said like it’s this that cured me or that that cured me,” Scott said.

“I believe it’s been a combination of the palliative chemo, the cannabis, the diet change, and maybe even the fenbendazole towards the end to snuff it out.

“I honestly think the combination of the alternative and the conventional can work side by side.”

Scott is one of many who have claimed that cannabis has played an important role in their cancer recovery.

However, as an illegal and expensive substance, THC-containing cannabis products remain out of reach for many cancer patients. Meanwhile, due to a lack of regulation, some find it difficult to source high-quality CBD that offers the benefits that they have read about.

Scott says he was “lucky” to have taken out life insurance which gave him the freedom to look for alternatives.

“Due to the nature of the CBD, and it only just getting over to the UK it was really difficult to find a trusted brand,” he said.

“[Life insurance] allowed me to spend a lot of money buying CBD from the wrong places and going down the wrong routes, but I was fortunate enough that I had the finances to not worry about things like that.

“I would never have been able to afford the amount that I’ve [consumed] if it wasn’t for that insurance money.”

Scott has now retired from his career as a self-employed builder and is running his own CBD brand, Life Oils, which he launched in 2020 with friend and now business partner, Matt.

The duo say they aim to produce high-quality products that they themselves would use and help people navigate their way through the often complicated world of CBD.

“We’re at the point where we’ve got something that we know is good and we know can help people,” Scott said.

“Now, we’re just trying to get it out there in the right way.”

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Case Studies

“CBD allows me to function” – biker ‘died’ three times after freak road accident

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Gary Brennan pictured with wife Shirley
Gary Brennan and wife, Shirley set up a trauma support service after the accident

After a serious motorbike accident, Gary Brennan almost lost his life, undergoing 54 operations to fix his broken body. Gary speaks to Cannabis Health about the “life-changing” accident and how CBD helps to manage the pain 11 years on.

On February 28th 2010, Gary Brennan collided with a car while riding his motorbike.

He broke both shoulder blades, tore his liver, crushed his kidney, shattered his pelvis fractured his spine and suffered from bleeding on the brain and a collapsed lung.

These are just some of the life-threatening injuries that he sustained in the accident.

So severe were his injuries that he was declared dead at the scene of the incident. Paramedics were able to resuscitate him before he was helicoptered to Leeds General Infirmary where he underwent emergency surgery.

During the operation, his heart stopped twice and his family were told that he may have just a few hours to live. He was put into an induced coma and relied on a life support machine to breathe.

Miraculously, Gary survived.

His condition stabilised enough to come out of the coma, but since then he has undergone a total of 54 operations.

When Gary’s condition stabilised enough to come out of the coma he was in excruciating pain. Having battled injuries that doctors deemed barely survivable, the 63-year-old was administered a plethora of drugs to keep the pain under control and has since undergone a total of 54 operations.

“The accident was life-changing to say the least,” Gary told Cannabis Health.

Gary Brennan underwent more than 50 operations

“I got through the operations and everything else, and then I got to the stage where I was lying in bed, zoomed out my head every day of my life with the drugs that I was taking.”

The cocktail of medications including morphine and ketamine kept the pain at bay but according to the father-of-four, it was “destroying” his brain.

Bed-bound, in pain and suffering from a relentless medication plan, Gary slipped into a period of depression and at one point considered suicide.

“I don’t say this lightly,” he said. “It brings tears to my eyes just thinking about it; that I actually even considered it having been a fit, active father-of-four and grandfather-of-six.

“But that was what the drugs were doing to me.”

Gary recalls waking up in the morning “groggy as hell” and in agonising pain until he took his medication.

“All it would do was numb my mind so that I didn’t feel the pain,” he added.

Knowing he had to find an alternative, he looked into CBD.

Although he was sceptical at first and questioned whether the benefits were merely a placebo effect, Gary found that CBD was helping reduce the pain while still allowing him to keep a “clear” head.

“Now I’ve got clarity, I’ve got a clear head, I can get out of bed in the morning. I still get the twinges but it’s not as severe pain,” he continued.

“The pain is always going to be there, but it’s handled in a different way. It doesn’t numb your brain, but the actual place that’s aching. It gives me relief and allows me to function.

“It changed my outlook on pharmaceutical drugs.”

Gary has now come off all prescription drugs apart from one, which he takes “now and then” to lower his blood pressure. Instead, he takes four capsules of CBD each day, equating to 720 milligrams.

Eleven years on from the crash, he has founded his own CBD brand, Brain Body Balance, and is working with US company, Ananda Scientific, to bring its patented Liquid Structure CBD formulation to the UK.

Ananda claims that the nano-sized technology makes its CBD formulation up to 20 times more bioavailable in the first 30 minutes than standard CBD. This is down to its “non-destructive” shell which contains the CBD and is able to pass through the gut and liver without being broken down. The shell only disintegrates when it reaches the small intestine, allowing for a greater amount of CBD to enter the bloodstream.

Ananda’s pharmaceutical-grade CBD is currently undergoing clinical trials to test its efficacy for treating pain, diabetes and mental health conditions including PTSD and anxiety.

Meanwhile, the nutraceutical arm of the company has launched over-the-counter products in the UK and the US through brands like Brain Body Balance.

Gary with one of his six grandchildren.

For Gary, producing a product with high bioavailability was a priority.

“I knew the product itself worked, but actually getting it into the bloodstream where it does its job is the hardest thing to do,” Gary said.

“You have to use stronger and stronger doses in order to get it into your bloodstream.”

Alongside his CBD venture, Gary set up the charity, Day One Major Trauma Support to limit the impact of trauma on patients and families in hospitals across Leeds and the wider Yorkshire area.

“When I was lying in hospital, the doctors would come around once a day and say, ‘how are you feeling, Gary?’, ‘can you feel your toes?’. Then they would say, ‘see you tomorrow’ and off they go,” he said.

“The nurse comes around, gives you your pills, then your family come in, pat you on the head and say it’ll be okay. Basically, that’s all you get.”

Aware of the lack of support, Gary set out to create a service that helped those like him who had suffered from major trauma. The charity provides financial assistance, legal advice and practical and emotional support.

Off the back of its success at Leeds General Infirmary, the charity will now be rolling out its services in all 27 major trauma centres in the UK.

Gary added: “Any help is there first-hand, no matter what, so nobody’s left in the lurch.”

 

 

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