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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

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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