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‘NHS asking children to come off meds for clinical trials could kill them’

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Parents have warned that ‘washing out’ their children’s medication to enter into clinical trials could put their lives at risk.

The parents of children with severe, life-threatening epilepsy say that insisting that they come off their medication to take part in NHS trials is ‘unethical’.

It comes after the Department of Health appears to have reversed its position on observational trials, insisting that randomised control trials (RCTs) are held before medical cannabis is made more widely available on the NHS.

Following a review into the lack of access held by the Government department last year, the NHS proposed two RCTs and an observational study.

This would take into account the cases such as eight-year-old Murray Gray, who has been seizure-free for 17 months since taking medical cannabis.

A programme of two randomised controlled clinical trials is now being developed by the National Institute for Health Research, with ministers insisting this is the ‘best course of action’ to build evidence.

These trials would require participants to undergo a ‘washing out’ period beforehand, during which they would have to come off their current medication.

Joanne Griffiths, whose son Ben, 11, has treatment-resistant epilepsy has seen his condition improve significantly since he obtained a private prescription last year.

However, her local NHS trust and leading children’s hospital, Alder Hey Children’s NHS Foundation Trust, refuses to prescribe the medication until these trials have been carried out.

During a meeting last year lead neurologists and hospital bosses said they were ‘keen’ to be involved in upcoming trials.

However, Joanne was told that Ben and other children who have already had access to THC products, will be offered a ‘wash out’ period to be eligible for the study.

“Asking these children to wash out their current medicines could kill them, it’s putting their life at risk,” said Joanne.

When Ben was on epidiolex – a drug containing CBD which is prescribed for severe epilepsy – he was having up to 300 seizures a day and was ‘near death’.

“I wouldn’t swap my child from something that is working to something that possibly won’t,” she continued.

“It’s unethical what they are asking us to do.

“We’ve managed to reduce every single one of Ben’s antiepileptic drugs that were not working to control his hundreds of seizures. The only thing that is stopping him having seizures right now is cannabis, if we were to remove that from his system he could go back to having hundreds of seizures and could die.”

Elaine Levy’s daughter Fallon, 26, has been taking medical cannabis since 2018. She saw an instant deterioration in her condition when she tried a cheaper oil to help manage the costs.

“Taking these kids off their medicine they could end up being blue-lighted to hospital, they could die or they might just go back to smashing their head against the floor again,” said Elaine.

“They can’t do that to these children and young adults whose lives have been changed so dramatically thanks to medical cannabis.”

She added: “The whole thing is just astonishing, it’s just the hippocratic oath. You can’t take a person off of something that is working for them and then give them a placebo instead.”

More than 30 cross-party MPs have now signed a letter to Health Secretary Matt Hancock calling for him to release emergency funding to help families cover the costs of prescriptions until they become available on the NHS.

A spokesperson for Alder Hey Children’s NHS Foundation Trust said they could not comment on individual cases.

They said: “Alder Hey is at the forefront for children’s health research and is a founding partner of the NIHR Clinical Research Network for Children. The Trust will continue to engage in supporting any new, well designed and robust clinical trials that investigate the role of cannabis-based medicinal products in drug resistant paediatric epilepsy.

“All studies take into account safety considerations for all potential recruitment candidates and the safety of all patients remains paramount.”

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Case Studies

“Our son’s life is in danger” – mum’s plea as son’s medical cannabis prescription runs out

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A mum has made an urgent appeal to raise funds for her son’s medical cannabis prescription which is due to run out in a matter of weeks.

Rachel Rankmore and her husband Craig Williams are desperately trying to find the funds to cover the costs of their son’s prescription, which will run out at the end of November.

Bailey Williams, now 19, has a rare form of epilepsy known as Lennox Gastaut Syndrome.

Four years ago doctors told the family that there was nothing else they could do for Bailey, who was in intensive care suffering hundreds of seizures a day.

But since receiving a private prescription for full extract cannabis oil two years ago, it has ‘transformed’ his life.

Bailey went from being gravely ill, to attending school, engaging in conversations, riding a bike and going out with his support workers for the first time in 16 years.

He was recently made a prefect at school, with his teachers commenting on how well he is doing.

However, his family has to rely on donations from members of the public to pay for his £1,300-a-month prescription.

This year’s coronavirus restrictions have put a stop to fundraising events which would usually raise thousands, casting doubt on Bailey’s future.

With his prescription due to run out in a matter of weeks the family fear without it Bailey will likely go back to having dozens of seizures a day, which could be catastrophic.

“Bailey has had a private prescription for over a year now, only afforded through fundraising from his amazing family and followers, who have taken Bailey into their hearts,” said Rachel.

“It’s horrific that we still have to rely on them but it’s especially difficult at the moment due to Covid and not being able to hold any of our usual fundraising events.”

Before finding cannabis, Bailey was prescribed over 20 antiepileptic drugs, all of which proved to be ineffective at reducing his seizures and left him barely able to function.

His NHS neurologists will not prescribe full extract cannabis oil, citing the British Paediatric Neurological Association (BPNA) guidelines, which state that clinicians should not feel ‘under pressure’ to prescribe cannabis based medicines until they have undergone clinical trials.

Rachel has now been told if Bailey is admitted to hospital with uncontrollable seizures once his current medication runs out, the only line of treatment available would be pain management.

“They would write my son off rather than give him a prescription for a medicine that has kept him out of intensive care, stopped the weekly ambulances and allowed him to reduce the amount of antiepileptic drugs he is on,” she continued.

“Bailey is living his best life for the first time in 16 years. He will be going into the community when he leaves school next year and we don’t know what type of person he is going to be. He has finally got his quality of life back and that’s going to get taken away from him again.”

Rachel and Craig both agree that they don’t want to see Bailey have to rely on strong pharmaceutical drugs again, believing it would be ‘cruel and inhumane’.

“Bailey is not at the stage of palliative care yet but without his medication he will be soon and the hospital will just load him up with drugs and tell us that he might not wake up – just like they did four years ago,” said Rachel.

Only a handful of medical cannabis prescriptions have been issued on the NHS since the law change in November 2018.

Rachel has repeatedly called on Welsh Health Minister Vaughan Gething to step in and help fund Bailey’s prescription until there is wider access on the NHS.

“Our son’s life is in danger because the guidance has failed him,” she added.

“It’s his human right to have the best quality of life possible and we’ve proven that cannabis is the only medicine that works for him.”

Rachel has been told that the Government is unable to help fund Bailey’s prescription as it is written by a private neurologist.

Peter Carroll of the End Our Pain campaign, commented: “In all my experience of campaigning on social justice issues, it has been one of the most shattering to see families like Rachel’s pretty much abandoned by the NHS. It is heartbreaking for them and beyond frustrating for those of us that have been fighting for this access to medical cannabis for so many years.

“I cannot believe it’s beyond the wit of the government and the NHS in the sixth biggest economy in the world to solve this problem. All that is needed is a small amount of money over a few years to get the financial pressure off these families until medical cannabis is more normalised across the NHS.”

Welsh MP and medical cannabis advocate, Tonia Anatoniazzi, who is supporting the family, said the lack of access was ‘unacceptable’ and she hopes to meet with the Health Minister to find a ‘way forward’ for Bailey, she commented: “I know that Bailey’s parents are really finding it challenging to fundraise because of Covid.  Bailey’s life has become so much richer thanks to medical cannabis under prescription it is a joy to see. The block to access a prescription on the NHS is unacceptable especially after the law change two years ago. I hope to meet with the Health Minister following a recent request from Kevin Brennan MP to discuss the way forward for Bailey.”

The Welsh Government is unable to comment on individual cases, but in a statement to Cannabis Health, a spokesperson said: “Specialist doctors have been allowed to prescribe cannabis-derived products for medicinal use from November 2018 although they are only recommended for use in a very limited number of cases such as for children with rare, severe forms of epilepsy and adults with vomiting or nausea caused by chemotherapy. The decision to prescribe is a matter for the doctor and the primary concern of doctors will always be to ensure the safety of their patients.

“We are unable to comment on individual cases, however families may wish to consider consulting the national Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) which aims to support paediatric neurologists in the consideration of prescribing cannabis-based medicinal products for paediatric patients with severe treatment-resistant epilepsy.”

Donate at Bailey’s Go Fund Me page

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Case Studies

“It gave me hope that life won’t always be like this”

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This year Kirran Gill became the first UK patient to have her medical cannabis treatment funded by the Sapphire Medical Foundation. Here she tells Cannabis Health what it means to have hope again.

Kirran Gill’s life has been devastated by chronic pain.

After being diagnosed with rheumatoid arthritis in 2011, and a short time later fibromyalgia, she not only lost her quality of life, but a career that she loved – and a husband who vowed to be there in sickness and in health.

Now 38, Kirran has experienced health issues since her late teens and first noticed pain while at university, although it was never severe enough to significantly impact her life.

But after she was involved in a car accident – where another driver hit the back of her stationary car at 40mph – the pain became a constant.

“From that moment on I was in extreme pain,” she says.

“It was incredibly aggressive and difficult to control. It took a while to get a diagnosis and I had to be quite tenacious, but eventually the tests came back that I had rheumatoid arthritis.

“My rheumatologist believes that it had gone into remission but the car accident triggered it.”

A year later Kirran’s husband left her out of the blue and shortly after she was diagnosed with fibromyalgia.

In 2014, as her condition continued to decline, she was forced to give up her teaching job and was unable to work, struggling to do basic tasks such as housework or washing her hair.

“My body just couldn’t cope anymore,” says Kirran, who despite being prescribed a number of strong opioids was still left living with extreme pain on a daily basis.

It was her doctor who suggested she try cannabis, after she told him she had been trying CBD.

“I had always been quite conservative with regards to cannabis, but the fact that my doctor was suggesting it opened the door a little bit,” she says.

“I did a lot of research after that and continued to take CBD. When the law changed I thought there would be a chance for me to try it.”

But nothing changed for Kirran after November 2018. With no doctors prescribing on the NHS, she was among many patients still unable to access cannabis-based medicines.

“I couldn’t afford a private prescription,” she says

“It just wasn’t even an option for me.”

Kirran applied to the Sapphire Medical Foundation, which aims to cover the costs of medical cannabis treatment to help reduce financial barriers for patients.

In July 2020 she was selected as the Foundation’s first patient to successfully complete the grant making processes and a clinical specialist confirmed her eligibility for treatment with cannabis-based medicines.

“It meant everything,” says Kirran.

“The most important thing that it offered me was hope, the hope that one day I wouldn’t be in constant pain and I might be able to do things that ordinary people do, like walk around a supermarket.”

Since taking the medication Kirran has been able to sleep for longer than two hours at a time for the first time in 11 years.

She hopes it will help her manage the pain so she can reduce the amount of pharmaceutical drugs she has to take, having experienced the side effects of eight years of strong opioids.

“Although the opioids do remove some of the pain, they also have their own impact on my health,” she says.

“It was really important to be given an opportunity to see that maybe one day I won’t have to rely on them because there is a natural product out there that could do the job equally as well but with less side effects. That for me was and still is the real beacon of hope.”

She continues: “With me having a number of health conditions it is very much a journey. It’s not the case that I’m now pain free, but I’m hoping it will alleviate a great amount of my pain and will allow me to have a better quality of life.”

Kirran is also hoping she will be able to return to her work, after hearing the experiences of other medical cannabis patients through organisations and communities such as PLEA (Patient-Led Engagement for Access).

“Seeing the stories from other people who have used cannabis is really inspiring,” she says.

“That is my goal, that I will be able to return to teaching, because I desperately miss it.”

The Sapphire Medical Foundation is hoping to help other patients access medical cannabis, but with Covid restrictions preventing fundraising activities from going ahead this year, it is among many charities struggling to support those who need it.

“There are lots of people out there who are on tight budgets, particularly those who can’t work because of health conditions. It’s so important that those people don’t get forgotten about,” says Kirran.

“The people at Sapphire have been absolutely amazing. As far as I’m aware there is no other organisation out there that covers the cost of the prescription and the cost of the appointment.”

For Medical Cannabis Awareness Week, the Foundation launched its latest fundraising drive, with teams from across the industry challenged to walk, run and cycle the 550km distance from London to Holland. A journey many desperate patients and their families have made to access life-changing treatment.

“It’s hard for everyone at the moment and there are so many charities that are equally deserving, but for those of us whose quality of life has been severely impacted by the conditions it’s so important that there is hope,” adds Kirran.

“That’s what the Sapphire Foundation did for me, it gave me hope that one day I won’t have to live like this.”

To donate visit www.sapphirefoundation.co.uk/donations/mcaw2020 

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Case Studies

‘I feel like I’m winning a little against my chronic illness’

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With doctors unable to pinpoint what was wrong with her, Jordanne Lee spent years suffering in silence, then she became a mum and learned to fight for herself.

Jordanne Lee was only 15 when she lost her mum, just weeks before her 16th birthday. It was around the same time that the pain started.

“I first noticed it in my lower back and my legs,” says the 28-year-old, from Glasgow.

I would go to the doctors every week complaining that the medication I was on didn’t seem to be working because I was constantly in pain.”

This went on for years, with Jordanne having tests for sciatica, arthritis and endometriosis, but doctors could never pinpoint what was wrong. She felt the health system was failing her and resented going to appointments only to leave with more questions than answers.

“After feeling like I was being pushed around from one specialist to another without getting answers, I eventually gave up and suffered in silence,” she continues.

“The rest of my teens were spent in constant pain, at times I didn’t feel like a normal teenager.”

Jordanne spent days unable to get out of bed with pain and fatigue and was forced to make up excuses as to why she couldn’t go out with her friends.

“After a while I stopped being invited out all together, and I lost some friendships as a result,” she says.

Battling depression and anxiety on top of her physical symptoms and not knowing what was going with her body, she tried to take her own life.

“When you are a teenager it can feel like your world is caving in around you. It can make you feel like giving up, which I did – on more than one occasion,” she adds.

Things got worse before they got better. When she hit her 20’s Jordanne felt the pain got worse. She had trouble holding down jobs because she had no medical diagnosis and often had to take sick days due to the pain and fatigue.

“I tried to live as normally as I could, I didn’t want to let it ruin my life but I also knew that I had to do something about it,” she says.

“I knew it wasn’t normal to be waking up in tears due to my back and legs being in constant pain.”

It wasn’t until she gave birth to her son at the age of 21, having been placed on bed rest for the last three months of her pregnancy, that she made a vow to get to the bottom of the pain.

“It wasn’t until I became a new mum that I really started to fight for myself,” she says.

“Being a new mum was hard enough. I knew it was time I got help and I wasn’t stopping until I got answers.

“Luckily my GP did everything he could to help me and made sure I was getting every test I could to find out what was wrong.”

Jordanne was eventually diagnosed with fibromyalgia in June 2016 and a few months later with chronic fatigue. Although there is no cure for either condition, doctors prescribed medication including dihydrocodeine, amitriptyline, mirtazapine and co-codamol, to help her manage the pain.

Now Jordanne does her best to manage her conditions, while bringing up her son, six, and tries to stay in tune with her body.

However, she is still in pain daily and her symptoms can affect her mobility.

“I have to constantly be on top of how I’m taking care of myself as I have a son who needs me, so I rarely get to think only of myself,” she says.

“With everything, there are bad days and good days, on my good days pain is at a minimum and I can function relatively well, as long as I take my medication, but on my bad days I sometimes end up bed bound for a day or two because my legs won’t move when I need them to and my upper body feels like my bones are breaking with every move.

She adds: “The pain can change so quickly, it can go from a two to a 10 in a matter of minutes, which makes it a little harder to navigate.”

Despite this Jordanne was able to study for a Higher National Diploma in film and photography and now runs her own social media business Jordanne Lee Creative and lifestyle blog, Thelifeofaglasgowgirl.co.uk where she writes about mental health, self-care and everyday life.

It was through her blog that she first discovered CBD. A few years ago a company asked her to review some samples, but she steered clear not feeling she knew enough about it. Then after it was recommended to her by a college friend during lockdown earlier this year, she started to educate herself. When another brand reached out in July she jumped at the chance to try it.

Jordanne now incorporates CBD into her daily routine and says it allows her to reduce the amount of opioid-based medication she takes.

“Since I have started to use CBD I have found that I don’t reach for my pain killers as often in the afternoon, which can make me feel groggy,” she explains.

“It helps me relax a little and takes the edge off and it has no side effects for me which is a win – when you have a child there really isn’t any time to be feeling drowsy.”

She takes a dose of CBD after her medication in the morning and another in the afternoon. However, she has found it to be most effective at night, saying that using it before she goes to bed has helped her insomnia.

“My insomnia would keep me awake all night, sometimes for 48 hours at a time. Some days I felt like I was a zombie because I couldn’t function due to lack of sleep which in turn would cause frequent flare ups,” she says.

“Now that I use CBD I find that I sleep through the night regularly, it helps me relax, unwind and drift off easily.

“Getting a proper sleep is vital for me to function at my best and it has reduced my flare ups significantly, meaning that I don’t have as many bad days or have to take as much medication.”

After seeing her mum, who had a heart condition, take over 30 different pills a day Jordanne has always feared becoming dependent on strong medication and is grateful for the freedom that CBD has given her.

“CBD has given me the freedom to choose how I manage my pain instead of relying on medication that I’m not too keen on in the first place, especially after seeing what my mum went through,” she adds.

“If I can choose how I want to manage my symptoms and it’s side effect free, I feel like I am winning a little against my chronic illness.”

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