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Case Studies

Parents are getting refused every day and things have to change

Last year Hannah Deacon became the first person to bring medicinal cannabis oil into the UK legally. But while her son Alfie now has the medication he desperately needed, Hannah’s campaigning goes on as other families continue to suffer, as Andrew Mernin reports.

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Hannah Deacon was threatened with social services for merely suggesting that her epileptic son try cannabis oil. Her request came in exasperation after seeing her little boy, Alfie Dingley, suffering a seemingly never-ending cycle of seizures and hospital stays.

Hannah says: “The attitude of the healthcare professionals towards cannabis was horrendous. Our doctor at the children’s hospital said ‘don’t talk to me about that again,otherwise I will call social services’. I wasn’t talking about doing anything illegal, I wanted to go abroad but the doctor wouldn’t even have the
conversation. It was very upsetting to be threatened like that when all I was doing was trying to be a good mum.”

To that point Alfie’s life had been dominated by clusters of epileptic seizures that began at just eight months old. On one occasion they resulted in a three-week stint on life support in intensive care. The seizures became more frequent over time and, by age five when he should have been enjoying his first year of school, they were happening every four to 10 days.Up to 150 seizures could occur in any one cluster and each terrifying attack could last up to almost half an hour.

Hannah and her partner Drew could only watch on as doctors trialled nine different anti-epileptic drugs.
He was also given steroids. “The doses of steroids used can be dangerous for anyone, never mind a child with a growing brain,” says Hannah.

“The knock-on effect of everything was that Alfie didn’t develop from the age of three and a half. He was also very violent and aggressive after he had clusters of seizures, while the intravenous steroids caused severe mental impairment. He was very ill. He was either in hospital or, when he was home, he could be aggressive and violent, attacking me and his little sister Annie all the time.It was no life for him or anyone.”

School life was also virtually non-existent.“He only managed to attend school for about three weeks of
his reception year. When he did go to school he was very aggressive to other children and violent.”
As Hannah grew desperate to find a way forward for Alfie, she began researching medicinal cannabis – and became increasingly hopeful by what she heard.

“I talked to lots of families abroad who were using it very successfully; particularly a family with a child that had the same condition as Alfie who had been seizure-free for two years with no other drugs. That obviously inspired me to look into taking my son to somewhere for treatment because doctors were saying in this country, there is nothing more we can do for him other than give him steroids which would likely kill him eventually or put him into psychosis.

For any parent of five or six-year-old, it’s not something you want to face.” Hannah fell out with Alfie’s assigned neurologist, who was reluctant to support the family’s pursuit of cannabis medicine overseas.

Their new neurologist was more open to the idea, however.“A range of new tests were carried out on Alfie. They tried to not use steroids and he got really ill and ended up in intensive care again. They also tried immunoglobulins [a type of antibody] for the first time, and the ketogenic diet [a highfat, adequate protein and low carb programme] but nothing helped him.

“Then I said to the neurologist in July 2017, ‘what do you think about us going abroad for medicinal cannabis?’ He said ‘you have no choice’. He was the first neurologist I’d ever met that put Alfie first.”
Their decision to fly to Holland, where medicinal cannabis is a long-established option in the health service, proved pivotal to Alfie’s quality of life.

“It was an amazing process,” Hannah says. “The doctors there are licensed to prescribe cannabis for patients if they feel it is an appropriate treatment – rather than individual licenses having to
be secured. Having said that, they still tend to use pharmaceutical drugs first and cannabis might be a third or fourth line of treatment, so they don’t use it as generously as people might think.

“We saw the neurologist there every two weeks which was amazing compared to England where you might get to see them once a year. She laid out everything that they were going to do very clearly. They didn’t change any of his anti-epileptic medication so they could understand what difference the cannabis was making. They introduced CBD first for three months.

It took six weeks to have an effect but once we got up to a dose of 150 milligrams a day, Alfie started having seizures every three weeks again. When we moved the dose up again, they were happening every month.”And these were just solitary seizures rather than the clusters he had previously been having.

But the real game-changer to Alfie’s situation seems to have been the introduction of THC. “The overall presentation was much better, but when we added in the two drops of THC a day, he stopped having seizures completely within a few days. Then we got home and had to take him off the THC, since
it was illegal in the UK at the time, and he became very poorly again.”

And so began Hannah’s high-profile campaign to get Alfie to access THC at home in Kenilworth, Warwickshire.“We were working with the home office from March 2018 to get our license and we were finally given Alfie’s license in June 2018. We worked quietly behind closed doors trying to get the right thing for them and for Alfie and it took a lot of effort.”

Hannah was the first person to legally enter the UK with cannabis oil last June, after much campaigning to spread the word about how Alfie had benefited from the medicine. Following the granting of Alfie’s and a handful of other special licenses, new guidelines on cannabis medicine came into force in November 2018.

They dictate that GPs keen to prescribe cannabis for a patient must refer them to one of 80,000 specialists on the GMC (General Medical Council) register. These medics can also prescribe other cannabis-based drugs, known as ‘specials’, but in doing so they would also have to seek approval from a
higher medical body.

While Hannah welcomes any softening of the UK’s approach to medical cannabis, she is now inundated by families frustrated by the continual lack of access to it. Part of the problem is low awareness and engagement among GPs, and flaws in the application process, Hannah says.“Many doctors know nothing about medical cannabis. I want to see people being educated properly in the use of it and I think there is a long way to go.

I really feel the applications are not being put through by doctors because they are either blocking them, or the hospital trusts are blocking it because of the way the application is worded. It says that doctors have to take 100% of responsibility for making that prescription. That’s not usual. The trust would be the legal entity not the doctor, but that is concerning for doctors as it opens them up to legal challenge by families if things don’t go right.

So I think there are a lot of issues to address.” As well as lobbying to change such problems, Hannah supports other families wishing to access medicinal cannabis.“I speak to parents every day who want access but they are just getting refused for many reasons. Their children aren’t ill enough or they haven’t tried the right amount of drugs; there are a million and one different excuses and it’s just not acceptable.

“I will carry on talking about this until this is and available to people when they need it – until doctors can prescribe this medication and understand what they are doing. “Having seen the change in my child, and having talked to families that are really suffering everyday, with no support because of the breakdown of child services, which is a separate issue, I will carry on campaigning about this. People deserve the right to try this medication which is available in many different countries all over the world.“We need to catch up in this country. As long as they have good medical practice, doctors should be able to prescribe this.”

Her number one priority, of course, is her own family – including one little boy who is now thriving.
“He loves going to school,” she says.“It’s a mainstream school with a one-to-one teacher who is absolutely
amazing and he loves her. Before it was terrifying leaving him in case he became unwell and they wouldn’t
know how to deal with it. It’s a very different feeling for him and us.“We went through two and a half years of taking him to hospital via ambulance every week, which is enough to traumatise anyone.“We recently went on on holiday to Devon. He was on the beach every day, running around and happily
enjoying himself.

“He does have a very aggressive genetic disorder which causes aggressive behaviour and severe learning delay so we are still dealing with speech delay, learning difficulties and behaviour, but it is much reduced and actually his quality of life and, in turn, our quality of life has massively improved.

“He is a happy, lovely little boy who is accessing playing with his peers at school, playing with his sister and enjoying normal family things, whereas before we could never do holidays and could never have days out unless we were next door to a hospital. It was just so restrictive and terrifying to go away somewhere because we were worried sick that he would become ill and we’d be stuck somewhere where we didn’t know anyone.”

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Case Studies

From catwalks to cannabidiol – a former fashion model’s journey to CBD discovery

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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

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Case Studies

“I’m not a zombie anymore”: Why this mum-of-five is speaking out about her medical cannabis use

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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

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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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