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
Case Study: Karate master avoids spinal surgery thanks to CBD
Suffering from acute back pain, John Casey was ready to undergo major spinal surgery until he started taking CBD two weeks before the procedure. He is now back to his active lifestyle – and still hasn’t had to go under the knife.
The 51-year-old from Dover lives with spinal stenosis, a condition which causes bone to grow inside the spinal canal, applying painful pressure on the nerves.
He was diagnosed with the condition three and a half years ago with the pain becoming progressively worse and harder to manage over time.
John lives an active life. As a carpenter by trade and karate instructor in the evenings, his diagnosis came as a blow and caused major disruptions to his life.
His karate teaching became near impossible and he also experienced difficulties playing with his band, as singing caused pain throughout his pelvis, groin and legs.
“I really struggled,” John says. “It was really hard for me to carry on doing that kind of physical activity with my back locking up.
“I became very grouchy and down and it was getting to the stage where I couldn’t demonstrate [karate], and I couldn’t do my private classes. I was really struggling to turn up. It was difficult just walking the dog with my partner, I was hobbling around.”
As recommended by his doctor, John underwent spinal epidural injections a total of four times, which involved general anaesthetic, injections up through the spine and two days off work for recovery.
The first procedure was a big success, giving John three and half months of relief from the pain. Unfortunately, the following three procedures had less and less of an effect. The fourth and final injection gave him only a few days of respite before the pain returned.
“I don’t moan very easily but this pain was really, really getting me down to the point where I thought I need to have spinal surgery. I couldn’t carry on living with the pain. Being an active person, it was really destroying my life.
“It was the last thing I wanted but I decided that I had to book it in.”
John was introduced to CBD by a friend who was looking for a product for his wife who had recently undergone a leg amputation.
At this point, the pain was debilitating, and John was ready to try anything. Despite his scepticism about cannabis-based products, he ordered Canaxen’s 16% CBD oil and started taking the supplement just two weeks before his surgery.
“I was getting the pain every day and it was sometimes hard to walk. I took the first dose at midday and took a second dose under my tongue at about six o’clock before I finished work. I felt great,” he says.
“At first, I thought it must just be a coincidence, but then the next day there was still no pain. It was so much better than any of the epidurals I have ever had.”
John went to see his surgeon two weeks later and spoke to him about the effects that CBD was having on his body. He decided to cancel his operation.
Unfortunately, John hasn’t been able to return to his old karate training routine, however he still teaches regularly and is able to live without pain.
“CBD has given me a pain-free lifestyle,” John says.
“If I go and train, the pain comes back because I’m moving around a lot and pivoting the hip. I can do it for a couple of minutes before it affects me then I’m back to square one and the CBD won’t mask that.
“But it does take the pain away from my day-to-day life doing my job and teaching.”
John adds: “Who knows if the pain will return in the future, but at the moment, my body’s happy and I’m not in pain.”
Families’ letter to Prime Minister highlights ‘cruel inconsistencies’ in medical cannabis policy
Families have written an open letter to the Prime Minister pleading with him to remove medical cannabis blocks.
The families of 25 children and young people suffering from severe epilepsy, have written an open letter to Boris Johnson urging him to intervene in their long running fight to secure NHS access to medical cannabis.
It comes after they learned that Mr Johnson sent a congratulatory letter to the mother of a child who is believed to be only the third person to receive an NHS prescription after a two-year fight.
In it the Prime Minister said he ‘sympathised deeply’ with those suffering from drug-resistant epilepsy and ‘completely understands’ the importance for patients to have access to the most effective treatments on the NHS.
Supported by the End Our Pain movement and leading UK epilepsy charity Epilepsy Action, on Tuesday 1 December, campaigner Elaine Levy will be outside Number 10 with a placard featuring a copy of the letter.
Elaine’s daughter Fallon, 27, who has a rare form of epilepsy, Lennox–Gastaut syndrome, has been successfully treating the condition with medical cannabis since 2018.
But the cost of funding a private prescription each month has placed a severe financial and emotional strain on the family.
Elaine is among a number of parents who are currently paying up to £2,500 a month for medical cannabis for their children – and with covid restrictions affecting fundraising, some are expected to run out of the medicine within weeks.
On behalf of the End Our Pain families, Jo Griffiths, whose son Ben, 11, has treatment-resistant epilepsy, said they felt ‘let down’ by the NHS and the Government.
“This is a matter of life and death,” she commented.
“When the law was changed on 1 November 2018 we all thought that our children too would be able to secure access to what we have proved is a life-transforming medicine for them, but it was not to be. We have fought tooth and nail for our children but have been comprehensively let down by the NHS and the Government.
“It’s all well and good for the Prime Minister to write a congratulatory letter to one family. If he can write such a letter, surely he can step in and help sort out what is a cruel and total failure in the medical cannabis policy.”
Jo added: “We have been told that the Government can’t use public money to help pay for private prescriptions until the NHS gets its medical cannabis prescribing house in order, so imagine our outrage when it appears that public money has been used in this way in Northern Ireland.
“If it can be done in one part of the UK, surely it can be done in the others too?”
Health Secretary Matt Hancock previously requested that the NHS undertake a review as to why NHS prescriptions weren’t flowing.
Published in 2019, one of the main recommendations was for an ‘alternative study’ – or observational trial – to be carried out as a means of getting access to medical cannabis for these children at no cost to them.
It now appears this commitment has been taken off the table, with randomised controlled trials (RCTs) which would require them to undergo a high-risk ‘wash out’ period from their current medication, being developed by the National Institute for Health Research.
Campaign director of End Our Pain, Peter Carroll, said: “We agree there needs to be more trials, but these children are already on the medicine and it would be unethical and dangerous to take some of them off the medicine so that they could take part in full blown randomised control trials which require some patients to be on placebo.
“Only in Britain could we end up with a fantastic policy change to legalise access to medical cannabis driven by the families of severely epileptic children, only to find that families with severely epileptic children can’t access it. The situation is riddled with inconsistencies.”
Epilepsy Action has joined forces with the families to ramp up pressure on the Government, following the two year anniversary of the medical cannabis law change on 1 November 2020.
Simon Wigglesworth deputy chief executive for the charity commented: “We urge the Prime Minister to end the suffering of these families and work with them and MPs towards the same goal. There must be a way to access this treatment on the NHS for children with severe epilepsy.
“For many it is a treatment that is already reducing their seizures – something that they feel finally works for their child, after exhausting all other options. Their calls for change have gone on long enough. They have already waited for two years, they cannot afford to wait any longer.”
Mum’s urgent plea for daughter’s medical cannabis
Mum and prominent campaigner Vera Twomey has pleaded with the Irish government to continue access to her daughter’s medical cannabis.
Vera whose daughter Ava Barry, 11, has a severe form of epilepsy known as Dravet syndrome has called on Ireland’s Prime Minister Micheál Martin and Health Minister Stephen Donnelly, to help secure the delivery of her medical cannabis prescription.
Before the outbreak of Covid-19, Vera and her husband Paul were travelling to The Netherlands every 12 weeks to buy medication and bring it back to Ireland for their daughter, who has been taking it to control her seizures for the last four years.
Due to the coronavirus lockdown and travel restrictions the Health Service Executive (HSE) have arranged for the importation and delivery of Ava’s medication, along with 40 other patients who are prescribed under individual licences.
Now Vera has revealed that the HSE has confirmed in writing that this arrangement will stop once the restrictions are lifted.
She fears that being forced to travel overseas every few months would put her at risk of contracting the virus which could be fatal for her daughter, whose immune system is compromised due to her condition.
“Ava has taken medicinal cannabis to control her seizures for the last four years. She has responded very well, and considering the serious outcome for Dravet Syndrome patients, it is clear that medical cannabis has saved her life,” said Vera, who once walked from her home in Cork to Leinster House in Dublin in protest to ask former health minister Simon Harris for help in her fight to gain access to medical cannabis.
“The HSE have told us, in writing, that the arrangement will cease once covid restrictions are lifted.
“My daughter has a compromised immune system and there exists a real danger that either Paul or I would contract covid-19 while travelling and bring it back to our daughter. It could cost Ava her life.”
Vera says she has been attempting to contact Stephen Donnelley since he became Minister for Health in June 2020, but only this week received a response from his private secretary – with no offer of a date or time.
“We have little time or interest in being fobbed off as we have been by previous ministers,” she continued.
“Travelling to The Netherlands in Covid times is unacceptably dangerous for our daughter’s wellbeing and the HSE have set a precedent by arranging importation and delivery of the medication. This arrangement must continue.”
Despite the legalisation of medicinal cannabis under The Medical Cannabis Access Programme in Ireland last year, only two products have been approved for use in the scheme, with many patients forced to travel to access their medicine.
“We need a permanent solution that works and that does not cost us, or the state, more than it should, said Vera.
“Right now, delivery is imperative and it must continue no matter what level of lockdown we’re under.”
She added: “Our priority is for our family members and our children who need security of access. Micheál Martin and Stephen Donnelly need to implement change as a matter of urgency.”
Cannabis Health has contacted the Department for Health and Stephen Donnelly’s office for comment.
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