Bailey Williams suffered hundreds of seizures a day before cannabis oil gave him his life back – but his family is forced to raise thousands to fund it. Bailey’s mum, Rachel Rankmore tells Sarah Sinclair why they won’t stop fighting for NHS access to the drug.
When the coronavirus lockdown came into force earlier this year, Rachel Rankmore and her husband Craig Williams’ first thought was whether they would still be able to import the cannabis oil that gives their son a better quality of life.
The second was how they would continue to raise the £1,700 each month to fund the prescription.
Bailey Williams, 19, has a rare form of epilepsy, Lennox Gestaut Syndrome.
He was born a healthy baby, but at the age of two and a half his parents woke in the night to the sound of him choking – Bailey was experiencing his first fit.
Medics initially diagnosed a febrile convulsion, but over time the seizures became more frequent – and severe – and Bailey was put on anti-epileptic drugs.
“Your whole world comes crashing down,” says Rachel, 44, a full-time carer for Bailey at their home in Cardiff.
“Bailey had to stop going to nursery, the seizures became more violent and progressed into drop seizures, absence seizures, myoclonic jerks, and partial seizures happening throughout the day and night.
“He had to wear a crash helmet and afterwards would be left bedridden or in need of a wheelchair.”
Bailey tried over 20 antiepileptic drugs, all of which failed to stop the seizures and left him experiencing extreme side effects, including hair and weight-loss and head-to-toe rashes.
“He had a really traumatic time on the medicines that were supposed to make him well and they just weren’t working,” continues Rachel.
“The quality of life was just awful for the whole family.”
Then the couple’s second son Ross, born four years later, was also diagnosed with a less severe form of epilepsy as a toddler.
Rachel and Craig made the decision to stop his medication, which was making him fall asleep at school, and thankfully Ross, now 14, has been seizure-free since.
But both boys have been left with learning difficulties and dyslexia as a result of their condition.
The family went onto try and control Bailey’s epilepsy through a ketogenic diet, which left him at risk of diabetes, and even explored brain surgery which he wasn’t a candidate for.
After what Rachel describes as ‘years of hell’, Bailey was given a vagus nerve stimulation, aged seven, which is supposed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve.
Although it alleviated some of his symptoms, Bailey being blue-lighted to hospital in an ambulance was still a weekly occurrence.
At their lowest point, with Bailey enduring another stint in the High Dependency Unit at the University Hospital of Wales, doctors told Rachel and Craig they had nothing left to try.
“The doctor said we have given him everything we can…we don’t know if he’s going to wake up at all and we’ve got nothing left to try,” she says.
“We just felt total despair.”
But they kept looking for other options, and came across the story of Charlotte Figi – the American youngster who helped popularise CBD use for the treatment of her epilepsy.
Charlotte’s Web CBD, named after the girl was founded in 2011. And when a friend of Rachel’s discovered a place in the UK was selling it, around six years ago they didn’t hesitate.
Rachel says: “We got in the car and went straight to buy our first bottle of Charlotte’s Web. That was a major turning point for Bailey, it gave him his life back.”
The drops seizures stopped, he became more vocal and was able to start learning again at a special needs school.
She adds: “He was just like an average boy, it was absolutely amazing.”
But just over two years ago Bailey started to plateau on Charlotte’s Web – which is not a full extract cannabis oil – and began deteriorating rapidly.
At one point he was having hundreds of seizures a day.
Around the same time, Hannah Deacon was fighting for access to cannabis for her son Alfie.
After seeing her story on This Morning, Rachel and Craig joined other parents in the End our Pain mission to change UK law. Alfie became the first patient in the UK to receive a permanent cannabis licence and is now only one of less than patients with an NHS prescription.
Guidelines published by the National Institute for Health and Care Excellence (NICE) last year recommend Epidyolex – a drug containing CBD with clobazam – to be offered as an option used to treat seizures associated with Lennox-Gastaut syndrome in children aged two years and older.
Rachel says they were offered Epidyolex but had heard from other parents it had failed to be effective and instead turned to a private neurologist in London, who prescribed Bailey full extract cannabis oil.
The starting dose cost £2,500 and to reduce the cost of thousands more in fees incurred by importing the drug from Holland, Rachel criminalised herself, travelling to the country in person to collect Bailey’s medicine.
They now rely on donations through the Mission for Bailey’s Shakes fundraising page – initially set up to raise £55,000 to buy an EEG machine for the hospital – supporters have continued to raise money to cover the costs of Bailey’s prescription, becoming “close friends” along the way.
“Bailey’s quality of life is amazing, he’s able to interact and tell us what he wants to do, he wants his own home and he wants to drive and he’s coming up with all these things that he wants to do in the future, which is incredible and quite emotional because it’s something we never thought we’d see,” says Rachel.
But Rachel and Craig, who still take turns to sleep next to Bailey every night in case he has a seizure, fear what the future looks like for their son if cannabis oil is not made available on the NHS.
“It’s a treatment, it’s not a miracle cure but it’s given Bailey his quality of life back and we never want to take that away from him, that would be cruel,” she continues.
“But we can’t sustain the level of costs indefinitely – what happens when we’re not here?”
The coronavirus lockdown has meant they have been unable to hold fundraising events, such as fairs, golf tournaments and bike rides which keeps the Mission for Bailey’s Shakes fund topped up and have now switched to a cheaper UK supplier.
The struggles of the previous months have made the family more determined in the fight to see cannabis oil available to patients on the NHS.
“It would be amazing for us to have an NHS prescription so we can just live our lives like everyone else, without having to think where the next lot of money was coming from,” says Rachel.
“It would be such a weight off our shoulders to know that we can plan a future for Bailey, to be able to stop fighting and fundraising and just enjoy our son being well.”
She adds: “This is why we need to keep fighting to make sure our children are safe and well on the medicine that works for them.”
NICE has acknowledged the need for more research into the use of medical cannabis and supports NHS England’s call to collect evidence from randomised controlled trials and observational studies.
But the guidelines state that until there is clear evidence of the safety and effectiveness of cannabis-based medicinal products, specialist doctors need to consider individual patient circumstances and risks and benefits in choosing treatments.
As most cannabis-based medicinal products are currently unlicensed, doctors must follow General Medical Council guidelines of prescribing.
A spokesperson for Cardiff and Vale University Health Board, said: “Our clinicians always act in the best interests of patients and put them at the centre of everything we do. We will continue to work with Bailey and his family to best manage his condition.”
CBD guides: Could CBD help with women’s intimate healthcare?
The endocannabinoid system can play a huge role in helping women’s health issues.
As the number of intimate care CBD products on the market continues to increase, we examine how CBD could help.
CBD has been associated with women’s health issues such as period pain relief, menopause insomnia and even hormonal acne. But as CBD is also thought to help us achieve homeostasis (balance) in the body, could it help to maintain vaginal health?
Women’s health and the endocannabinoid system
The endocannabinoid system is thought to regulate different functions in the body such as sleep, mood, appetite, memory and fertility. It is made up of receptors, enzymes and endocannabinoid that are found naturally all over the body. There are two major receptors called CB1 and CB2.
CB1 is usually found in the central nervous system, while CB2 is found in the peripheral nervous system. Endocannabinoids bind to the receptors to help with different problems such as pain.
The vagina, bladder and urinary tract also have endocannabinoid receptors.
CBD, unlike THC, does not bind the receptors. CBD may supplement the endocannabinoid system helping to regulate your system. The cannabinoids travel the receptor that has been stimulated and needs extra help to achieve a balance.
Depending on the dose and which receptor it is, CBD is thought to help anxiety, sleep problems, inflammation and pain.
This could be especially useful for those struggling with conditions such as endometriosis, painful periods or anxiety around sex.
When it comes to vaginal health and women’s health concerns in general, how could CBD help?
CBD may help with painful periods due to its anti-inflammatory properties. During a period, the uterus contracts to shed its lining while releasing hormone-like substances called prostaglandins. These substances are involved in inflammation and pain while triggering muscle contractions. Higher levels of prostaglandins may mean more painful menstrual cramps.
One study from 2019 revealed that women with endometriosis self-rated cannabis or CBD as most effective for soothing pain. This was compared with other practises such as yoga and stretching.
Another study, which was focused on arthritis in rats, found that CBD gel applied to the area may help to reduce pain and inflammation.
Endometriosis is an extremely painful condition that can be debilitating. The tissue from the uterus can become attach itself to other organs in the body such as fallopian tubes, ovaries or pelvis.
Studies have shown that women are increasingly turning to CBD for help alleviating the pain of endometriosis. There are on-going studies into how exactly CBD suppositories or tampons may help endometriosis but there are no results as of yet.
A study into fibromyalgia and pelvic pain for women from 2021 revealed that over one-third of the women surveyed were current CBD users with 81 per cent of this group stating the use had ‘improved their pain.’ A further 76 per cent of users said they were able to substitute CBD for other medications including opioids, NSAIDS, gabapentinoids and benzodiazapams.
There are many different reasons for vaginal dryness including menopause, medication and even particular times of a menstrual cycle.
CBD may help to soothe any redness or irritation caused by vaginal dryness. If the skin is more sensitive as a result the anti-inflammatory properties may reduce any swelling or issues of eczema or dermatitis.
CBD is thought to be potentially anti-fungal which may help with yeast infections.
However, its important to note, before you grab your CBD oil, that there are no direct studies for yeast infection. CBD may be able to boost the effects of caryophyllene oxide or beta-caryophyllene. Both of these are terpenes that are found in the cannabis plant. An older study from 1999 highlighted caryophyllene as a potential help for fungal infections in nails and the skin.
CBD may also offer some relief for irritated or itchy skin as a result of fungal infections such as candida. This is due to its potential anti-inflammatory properties which can help to reduce redness or swelling.
What is the best CBD to use internally?
While it may be tempting to use our existing CBD products in our intimate areas, it’s best not to.
CBD products for intimate areas are formulated to be used internally which means they are safe. Oils or topicals may contain ingredients or perfumes that can cause infections. The vagina contains a type of bacteria, a Lactobacillus. It produces lactic acid and helps to lower the pH of the vagina, but any form of imbalance can result in infections or thrush.
How to use CBD internally
The most common ways to use CBD vaginally are lubricants and suppositories.
While suppositories may seem scary, they can be one of the easiest ways to take CBD. They are made from from oils such as coconut, that can melt at body temperature. The CBD can take a few minutes to be absorbed by the body once it has melted the oil. It is worth noting that it can be a bit messy when the oil melts, so using something like a sanitary pad can place a barrier between your clothing and the oil.
Sex and women’s health
Latex and safety
Another way that oil-based products may cause a problem, is with latex. Oil can erode latex condoms or glide dams causing them to break or split. If CBD products are being used during sex, always make sure that the CBD being used is water-soluble.
Some people can feel really anxious around sex, due to past experiences, pain or being intimate with a new partner.
A lot of the studies conducted on anxiety and sexual anxiety appear to be focused on men. However, more general anxiety and CBD studies do have a more mixed-gender ratio.
A review from 2020 suggested that CBD could help with anxiety disorders. In reducing anxiety, a person’s libido may increase helping them to feel like sex more.
When the vagina is aroused, the mucous membranes in the vulva and vagina begin to produce a natural lubricant. This is also referred to as vasodilation, the natural process of our bodies expanding our blood vessels to allow more oxygen into certain tissues.
Some studies show that CBD may help with this process by increasing sensitivity and blood flow around the body. CBD is absorbed through the mucous membranes in the vagina and straight into the blood vessels. It is one of the quickest ways to absorb a dose of CBD as it doesn’t have to pass through the digestive system.
CBD suppositories and lubricants are designed to be used internally.
Does the endocannabinoid system have an effect on exercise euphoria?
What causes a runner’s high? Is it CBD, endorphins or our endocannabinoid systems?
The euphoric feeling after exercise, often referred to as a ‘runner’s high’, is associated with a reduction in pain, stress and anxiety.
Research now links the runner’s high to our endocannabinoid system, suggesting that the exercise-induced endorphin release it was always attributed to, is not solely responsible.
But what is our endocannabinoid system? And how does it work?
We examine endocannabinoids, endorphins and how CBD plays a part in balancing the body and exercise
What is the endocannabinoid system?
The endocannabinoid system is thought to regulate different functions in the body such as sleep, mood, appetite, memory and fertility. It is made up of receptors, enzymes and endocannabinoids.
Endocannabinoid receptors are found naturally all over the body. There are two major receptors called CB1 and CB2.
CB1 is usually found in the central nervous system, while CB2 is found in the peripheral nervous system. Endocannabinoids bind to the receptors to help with different problems such as pain. It is not fully understood how cannabinoids bind with receptors.
Endocannabinoids are actually naturally produced molecules that are similar to cannabinoids. So far, researchers have identified two key endocannabinoids: anandamide (AEA) and 2-arachidonoylglyerol (2-AG).
Enzymes break down the endocannabinoids once they are no longer needed. The two major enzymes are fatty acid amide hydrolase, which breaks down AEA and monoacylglycerol acid lipase, which typically breaks down 2-AG.
What is the difference between endocannabinoids and endorphins?
Endorphins are chemicals released by the body in response to pain or exercise. They were traditionally associated with the euphoria felt after a run. However, endorphins cannot cross into the brain through the blood-brain barrier which exists to protect the brain from toxins and pathogens.
How does CBD feature in all of this?
CBD interferes with the receptors found in the endocannabinoid system to help them balance the body. However, it is not fully understood how this happens.
CBD, unlike tetrahydrocannabinol (THC), another cannabinoid found in the plant, does not bind the receptors. CBD may supplement the endocannabinoid system helping to regulate your system. The cannabinoids travel the receptor that has been stimulated and needs extra help to achieve a balance. Depending on the dose and which receptor it is, CBD is thought to help anxiety, sleep problems, inflammation and pain.
This is why a lot of runners or athletes depend on CBD as part of their recovery routine after a strenuous workout. It may help to alleviate some of the muscle pain they endure during a run.
How this US brand is helping veterans access free CBD
“U.S. military veterans are some of the most selfless individuals so we thought the project would be a perfect fit.”
US vaping supply brand, CCELL, has partnered with the Veteran’s Walk and Talk project to provide free access to CBD.
CCELL will be partnering with the Veterans Walk and Talk (VWAT) to gift its members with limited edition CBD vapes that highlight their military service.
Veterans Walk and Talk is a community project based in the US, offering support, psychedelic therapy and cannabis.
It was founded in 2016 by Colin Wells, who served in the US Army, as a way for veterans in Southern California, Sacramento and Oklahoma, to take control of their health journey.
The project now holds regular community outreach events that provide veterans with a one-on-one psychedelic or cannabis walk and talk therapy or group hikes. They also hold trail and beach clean-ups where the community come together to give back to nature along with book clubs and comedy nights.
To mark the firm’s fifth anniversary, the CCELL team decided to join forces with VWAT.
Speaking with Cannabis Health, Joe Strain, vice president of CCELL said: “VWAT started with veterans in mind. Founder Colin Wells, who served in the US Army and experienced withdrawal traumas, began posting on social media to see if anybody wanted to join him on his hikes as a means to relieve stress.
“On these hikes, he’d provide free cannabis, education and a safe space for people to talk. These hikes inspired him to start VWAT as a way to give back to his community, with the main goal of reducing the suicide epidemic among veterans. Now, VWAT has 12 chapters across the country, all carrying the same mission.”
Joe added: “US military veterans are some of the most selfless individuals, so we thought they would be a perfect fit. We heard about what VWAT is doing for veterans and decided to support the organisation on its mission to help improve the lives and health of veterans by providing them with CBD vaporisers. The alignment was undeniable, and we’re honoured to be a part of helping them further their mission.”
Mental health and veterans
Mental health conditions such as anxiety, depression and post-traumatic stress disorder (PTSD) can be common among veterans. The symptoms of PTSD can be debilitating causing flashbacks, nightmares or physical effects such as nausea or pain.
A study from 2017 highlighted the difference in PTSD between veterans and civilians. In the study of 5,826 veterans, researchers recorded a rate of 13 per cent with PTSD. This is almost double the seven per cent of the US population with a PTSD diagnosis.
Studies show CBD may help PTSD by interacting with the endocannabinoid receptors in the body.
Joe explained: “It’s known that many veterans deal with PTSD after they have served. Studies have shown that CBD can be effective in reducing PTSD symptoms. This can potentially afford members the opportunity to manage their symptoms without excessive pharmaceutical drugs, which often cause side effects.”
He added: “CCELL has produced limited edition CBD vapes which will signify that the users of the vapes are members of Veteran’s Walk and Talk. Not only is this great for the members, but it is also significant for this non-profit organisation as it helps to spread awareness about the great work that VWAT does and will help encourage more people in need to join.”
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