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
- Medical Cannabis Division of Rokshaw Ltd Rebranding to Curaleaf Laboratories
- Breaking Ground: Morama Holdings Pioneers High-Quality, Organic Cannabis in Lesotho
- Patients to call for equity in medical cannabis access at UN Commission on Narcotic Drugs
- Medical cannabis has ‘negligible’ impact on driving performance – study
- Research shows ‘remarkable’ effects of cannabis in treatment of skin cancer
- Optimism despite delays: Ireland’s journey toward cannabis decriminalisation
News5 months ago
FSA drops recommended daily dose of CBD to 10mg – everything you need to know
Pain6 months ago
Medical cannabis ‘effective’ and ‘fast-acting’ for neuropathic pain – study
News4 months ago
UK government accepts ACMD recommendations for CBD products
Industry4 months ago
First UK-grown cannabis medicine expected by end of 2023
News5 months ago
The Netherlands to launch cannabis legalisation pilot December 2023
News5 months ago
BBC documentary highlights ‘pot luck’ of access to cannabis on NHS
Science5 months ago
New cannabis research: cancer, Type 2 diabetes, autism, fibromyalgia and skin disorders
News4 months ago
Europe’s first legal cannabis dispensaries to open under sixth Swiss pilot