The family of a teenage boy from Cardiff fear they will not be able to afford the cannabis oil that stops their son having hundreds of seizures a day.
Bailey Williams, who is 17 and lives in Cardiff, suffers from epilepsy.
He has had the condition since he was two and it has caused him to have thousands of seizures.
At its worst, the condition makes Bailey fall to the floor and turn blue, while his parents have to sleep by his side each and every night in fear that he will suffocate against his pillow.
Things have improved in recent months for Bailey, who attends a special needs school in Penarth, because he has been taking cannabis-based medication.
The problem, however, is the cost which can be up to £4,000 a month.
“Bailey has been having multiple seizures every day since he was two and a half,” said his mother Rachel Rankmore.
“When he was seven his condition was getting worse and he was diagnosed with a rare form of epilepsy called Lennox–Gastaut syndrome.
“He’s had all sorts of different treatments over the years and he would have hundreds of seizures a day. We had regular visits to the hospital and he was loaded with different drugs.
“He would have different types of seizure – screeching noises, shaking of the whole body, sometimes he would have drop seizures where he would fly across the room and fall to the floor. He’ll turn blue and be in a complete comatose state afterwards where he can’t walk or talk or do anything.
“It got to the point where there were no drugs left to try.”
There appeared to be some light at the end of the tunnel for Bailey and his family last November when a change in the law made cannabis with Tetrahydrocannabinol (THC) – a psychoactive constituent of cannabis – available for prescription from specialist doctors for medicinal use.
This has changed Bailey’s life, and the lives of his family, as it has it has allowed him to be treated with a cannabis oil called Bedrolite, which is administered via a syringe three times a day.
However, this medication is not available on the NHS, meaning Bailey’s family must pay for a prescription from a neurologist in London. The first prescription, given in June, cost £2,000. The next one, due in September, is likely to cost £4,000. That will last Bailey around a month.
Having already raised around £15,000 through different fundraising drives, Bailey’s mother knows that funding the cannabis oil privately is not sustainable in the long-term.
“Until the NHS start writing prescriptions this is what it will be like,” she said.
“It’s really frustrating because the law has been changed but it’s not being actioned on. People have said it’s not about money but it clearly is.”
The National Institute for Health and Care Excellence (NICE) has not recommend the wider use of medical cannabis, and will issue its final guidelines on the matter in the coming months.
For Rachel, she cannot contemplate going back to a time when Bailey’s cannabis oil was not readily available, but at the same time is fearful of the future if the medicine is not made available on the NHS.
“If we could get an NHS prescription, that would change everything.
“We can’t keep asking people for help, we can’t keep begging for money. We might have to end up remortgaging our house, because we cannot go back to the way things were before we started on this medication.
“Ben has changed so much in how he is in the past couple of months. It’s great to see him enjoying himself again. His quality of life has improved, the number of seizures has reduced dramatically and his personality has come back.
“He’s been playing with his younger brother and he can now play ball with his dad. That was very emotional to see.”
The Department of Health and Social Care (DHSC) said there is a “need for more clinical evidence” with regards to the prescription of cannabis-based medicine.
A spokesman for the DHSC said: “The decision to prescribe must remain a clinical one, made with patients and their families, taking into account the best available international evidence, the potential risks and benefits and individual circumstances.
“We will now carefully consider the NHS’s findings, alongside the recently published Health and Social Care Committee report, to identify how we can better support clinicians in prescribing cannabis-based medicinal products where clinically appropriate.”
The Welsh Government said any decision to prescribe cannabis is a matter for doctors and pointed out that no cannabis products have passed “rigorous safety and quality tests”.
A spokesman for the Welsh Government said: “Specialist doctors have been allowed to prescribe cannabis-derived products for medicinal use from November 2018. However they are only recommended for use in a very limited number of cases for children with rare, severe forms of epilepsy and adults with vomiting or nausea caused by chemotherapy.
“The decision to be prescribe is a matter for the doctor.
“The primary concern of doctors will always be to ensure the safety of their patients. None of the cannabis products are a licensed medicine, which means none of them have passed the rigorous safety and quality tests carried out by the Medicines and Healthcare products Regulatory Agency.
“Cannabis products may therefore pose unquantified and potentially greater risks to patients than licensed medicines.”
NICE is currently consulting on the findings of its study into the prescription of medicinal cannabis, and will publish its final guidelines in November.
Any future decisions about the deregulation of medicinal cannabis will be made by the Home Office.
Bailey’s family continue to raise money for his continued prescription of cannabis oil.
“We can’t go back to the medication he was on before,” his mother said. “He will not be here for much longer if that happens.”
Bailey’s fundraising page can be found at: https://www.gofundme.com/f/mission-for-baileys-shakes