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.”
Provacan brings high-strength, 72% CBD to UK
The science-led brand is bringing the latest cannabis technology to the UK with two high potency CBD formulas.
Provacan, the CBD brand from cannabis research company CiiTECH, has introduced the two 72 percent products as part of its popular VapePod range developed in partnership with Kanabo.
The Provacan range of VapePod compatible pre-filled pods have grown to become one of the company’s most popular vape products.
The VapePod device was developed by Israel-based Kanabo Group and provides users with a certified, safe and effective vaporisation system with innovative metered dosing with high bioavailability.
Vaporisation of CBD improves the rate of absorption when compared to other means such as ingestion.
The device optimises efficiency while delivering CBD formulas more safely and simply. It can only be used with compatible pre-filled cartridges, such as Provacan’s Day and Night pre-filled pods.
Kanabo recently became the second cannabis company to list on the London stock exchange.
This is a revolutionary step for the VapePod entering the medical cannabis scene in the UK and is vital for patients for whom this delivery method will replace the smoking of cannabis flowers.
Avihu Tamir, CEO at Kanabo, said: “We are pleased to have CiiTECH as a partner in the UK for developing pure innovative hemp formulas. The unique formulas are coupled with the VapePod platform which give consumers great satisfaction in knowing that they’re getting the most out of their CBD.”
Building on the popularity of the 55 percent CBD VapePod range, Provacan has worked with Kanabo Research to launch two new higher strength vape formulas for its customers.
The all-new Night Terpene and Day Terpene CBD VapePod formulations contain 72 percent CBD together with other minor cannabinoids and a potent mix of terpenes.
Terpenes are widely used and can be found in essential oils and aromatherapy.
Additionally, the all natural pods are free from traces of pesticides, heavy metals and solvents and don’t containing PG, VC, MCT, nicotine or vitamin E.
Provacan is part of the growing portfolio of brands by leading British cannabis company CiiTECH Ltd, with R&D management based in Israel.
Founded by Clifton Flack in 2017, Provacan is the flagship brand within the portfolio and focuses on bringing the latest cannabis technology to its loyal consumers in the UK and across the world.
Partnerships with international medical cannabis research companies fuel CiiTECH’s product development and provide brands like Provacan with forward thinking industry knowledge and the ability to create highly respected science-backed CBD products for sale in the UK today.
Eli Whiteman, CiiTECH’s VP business development, said: “Our partnership with Kanabo goes back a long way and beyond technological innovation. Our main priority is to strive to ensure our customers have access to a superior combination of bioavailability, unique delivery systems and consistent CBD products that they can rely on.
“We achieve this by channelling consumer demands into product development and by partnering with like minded medical cannabis companies that do the same.”
The new Night Terpene CBD and Day Terpene CBD VapePods are available from Provacan now, retailing at £49.99 each. To find out more information about the products, visit https://provacan.co.uk/vapes/.
Integro Medical Clinics: How cannabis can help manage migraine pain
The experts at Integro Medical Clinics explain how cannabis medicines can help manage and alleviate the excruciating pain of migraine.
Migraine can be a devastating and utterly miserable condition that can have a profound effect upon the patient’s quality of life.
But medical cannabis can offer a really effective, side-effect free treatment option, as we see in our patients’ story with Mike.
A migraine is categorised as a moderate or severe headache felt as a throbbing pain on one side of the head. It is generally accompanied with symptoms such as feeling sick, vomiting and increased sensitivity to light or sound.
It’s a common health condition, affecting around one in every five women and around one in every 15 men and they usually begin in early adulthood.
No one knows exactly what causes migraines, although they are thought to be the result of temporary changes in the chemicals, nerves and blood vessels in the brain.
Many patients find they have a specific trigger such as certain food or drink, stress, tiredness or hormonal changes such as starting your period. Around half of all people who experience migraines also have a close relative with the condition.
There are several types of migraine, including:
migraine with aura – where there are specific warning signs just before the migraine begins, such as seeing flashing lights
migraine without aura – the most common type, where the migraine happens without the specific warning signs
migraine aura without headache, also known as silent migraine – where an aura or other migraine symptoms are experienced, but a headache does not develop
The frequency of the occurrence of migraines really depends upon the individual. It can be several times a week to every few years.
There’s no one specific cure for migraines. Patients try pain medicines such as paracetamol and ibuprofen and triptans to help with the pain but these medicines are often ineffective.
If you suspect a specific trigger is causing your migraines, such as stress or a certain type of food, avoiding this trigger may help reduce your risk of experiencing migraines.
It may also help to maintain a generally healthy lifestyle, including regular exercise, sleep and meals, as well as ensuring you stay well hydrated and limiting your intake of caffeine and alcohol.
Cannabis medicines have been found by certain patients to be incredibly helpful in the management of pain.
Dr Anthony Ordman, senior clinical adviser and hon. clinical director of Integro Clinics explains why: “Recent medical scientific research is showing that cannabis medicines can have several useful roles in the prevention of migraine, and also reducing pain if a migraine attack does occur.
“It is likely that substances in cannabis medicines (plant-derived CBD, THC and terpenes) all have roles to play and that they supplement the activity of the brain’s naturally occurring endocannabinoid system. This system may be under-active in people prone to migraine.
“There are three likely mechanisms by which cannabis medicines may be effective. Firstly, the natural stabilising or anticonvulsant effect of the cannabinoids suppresses the spreading abnormal wave of voltage depression in the brain’s cortical neurones. This wave precedes all migraine attacks and causes the aura familiar to migraine sufferers.
“Secondly, cannabis substances are thought to stabilise the mast cells of the immune system. In migraine, mast cells are involved in dilatation, or opening up of the blood vessels of the brain’s lining (dura), causing that familiar pulsating headache. Cannabis medicines may prevent this process from occurring.
He adds: “And finally, as in other painful conditions, if a migraine does occur, cannabis medicines are likely to block the transmission of pain messages in nerves running from the brain stem to the pain centres of the brain, to reduce pain itself.
A recent study showed that cannabinoids may reduce migraine severity by 49.6 percent without causing the ‘overuse headache,’ that other pain medicines such as paracetamol may cause.”
The patient’s story
Mike is a physically fit 37-year-old South African, who first experienced migraines as a teenager.
The pain he suffered was agonising and totally debilitating. It disturbed his vision, caused nausea and deep pain. Prior to the onset he experienced the aura of lights and would go blind in one eye.
An attack could wipe out days of his life whilst he recovered. For several days after the attack, he would feel befuddled and that his brain was not working properly.
Initially he looked into what could be causing the migraines worrying that he might have a brain tumour, but MRI scans thankfully showed that this was not the case. It was through luck and circumstance he stumbled upon cannabis as a medicine for his condition.
Mike was out playing golf in the hot sun and he became dehydrated. He felt the first symptoms of the headache begin so he paused for a rest under a tree and smoked some cannabis.
Instantly, he felt the pain begin to recede and he knew he had found a solution to his condition. He also wanted to point out that he was able to finish his round of golf and win. He came to the realisation that dehydration and hot sun were his major triggers.
Using cannabis would also mean that when a migraine did come it would last for a much shorter period of time and there was none of the post attack brain fog.
“I cannot recommend medical cannabis highly enough as treatment for migraine,” says Mike.
“It addresses all of the symptoms of the loss of vision, nausea and deep pain by addressing the inflammation in the blood vessels of the brain.”
Dr Ordman adds: “Integro Medical Clinics always recommend remaining under the care and treatment of your GP and specialist for your condition, while using cannabis-based medicines, and the Integro clinical team would always prefer to work in collaboration with them.”
If you would like further information, or to make an appointment for a medical consultation, please contact us at Integro Clinics:
Further help and support can be found at the following patient charities:
Study: Is CBD the future of chronic bladder pain treatment?
A first-of-its-kind study using human donors is examining the potential of CBD for treating chronic bladder pain. Cannabis Health speaks to the scientist leading the research.
Chronic pain is an oppressive human health problem that affects millions worldwide. In 2011 alone, the direct and indirect costs of chronic pain were at $600 billion dollars in the USA. This outweighs the costs related to heart disease, cancer, and diabetes combined.
Among these patients are the nearly eight million women and four million men suffering from interstitial cystitis (IC), commonly referred to as chronic bladder pain.
The symptoms of this chronic disease include pelvic pain and urinary storage dysfunctions, which can severely impact quality of life.
There are currently no adequate treatments for people with chronic bladder pain and scientists say new therapeutic approaches are desperately needed to not only prevent pain but also address co-morbidities such as social isolation, depression and anxiety.
A growing body of evidence suggests that cannabinoids could be the answer for treating chronic pain and inflammation. And as the research effort increases, the formulation of novel cannabinoid formulations progresses alongside it.
One of these formulations, developed by Desert Harvest Inc., packages cannabidiol with aloe vera to increase the bioavailability of CBD by 25 per cent.
As with most areas of CBD research, evidence regarding its efficacy is limited, however, a new collaborative study between Desert Harvest and the McGill University Research Centre for Cannabis in Montreal hopes to change this.
The two-phase study aims to validate whether the CBD and aloe vera formulation could alleviate the pain symptoms in a preclinical model of IC.
Dr. Reza Sharif-Naeini who leads the study said: “For the past 20 years or so, there hasn’t really been any development of new therapeutic drugs for patients with chronic pain.
“By partnering with industry colleagues, we’re trying to accelerate the speed to market for these analgesics so that the patients can benefit from them.
The first phase of the study involved a rodent model in which mice were administered a compound that metabolises acrolein in the liver.
The compound then accumulated in the bladder causing tissue damage. The symptoms are similar to human IC, including bladder inflammation, pain and bladder overactivity.
Initial data from the study are encouraging. The researchers demonstrated treatment with the cannabidiol-aloe vera formulation significantly reduced pain symptoms.
“Although we only tested it for seven days, it was enough for us to see a significant reduction in bladder pain experienced by these animals,” Dr Sharif Naeini said.
“It is a very important and exciting discovery.
“The next step for us is to start testing these compounds on human pain neurons to determine whether the effects can be translated to humans.”
The second phase of the study, expected to begin within the next month, will involve testing the effect of cannabidiol on neurons obtained from deceased human donors.
Dr Sharif-Naemi explained: “We’ve partnered with surgeons in local hospitals, so as soon as a donor dies the nervous tissue, including the pain-sensing neurons, can be harvested and kept alive in a small dish for about two weeks.
“[We] can assess the function of these pain neurons and see what happens when we apply these cannabinoid drugs to them.
“This way, we’ll be able to tell directly whether these compounds would have a beneficial effect on humans.”
The pain transmission pathway can be broken down into three steps. First are pain-sensing cells in the ‘periphery’, such as the skin or, in this case, the bladder. These nerve fibres detect the pain stimulus and transfer the information to the spinal cord.
At the spinal cord, pain transmitting neurons take information up the spine and into the brain where the third step takes place. This final step is referred to as pain interpretation.
“Cannabinoids can affect either one of these steps or all three of them together,” Dr Sharif-Naeini added.
“We think that in the periphery, cannabinoids prevent the activation of your pain-sensing neurons. This means that your nervous system doesn’t even detect the pain inflammation; it is not allowed to enter into your central nervous system.
“This is what we’re going to test in the second phase of these studies.”
Sadly, current pharmacological treatments for chronic pain, mainly opioids, are burdened with severe side effects. A rise in opioid prescription over the past decade has led to what is referred to as the opioid epidemic.
Although not a primary factor, the treatment of chronic pain is thought to be linked to this crisis.
“The absence of proper pain management is one of the contributing factors that led us to the opioid epidemic in America, so there’s really a push to develop new treatments,” Dr Sharif Naeini said.
“There are people doing opioid research to come up with better ways of eliminating the side effects of opioids, but eventually we’re going to come to a place where maybe we have gotten all that we can out of drugs, and we need new alternatives.
Dr Sharif-Naeini believes that cannabinoids could be a future alternative.
“Cannabinoids are an alternative with high potential. The more studies that are done, the more people can make informed decisions about what [medication] they take for their pain.
“Every time more research comes out it’s great because it allows us to better understand how the cannabinoid system functions.
“The hope is that we can develop better tools that will allow us to reduce pain in some of these intractable chronic pain syndromes, without necessarily affecting the patient’s functioning and cognitive capacity.”
- Provacan brings high-strength, 72% CBD to UK
- Integro Medical Clinics: How cannabis can help manage migraine pain
- Study: Is CBD the future of chronic bladder pain treatment?
- What are CBD patches and do they work?
- Is it safe to take CBD with other medication?
- “It’s time to celebrate her legacy”: Charlotte Figi to be remembered with tribute concert
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