The mother of a U.K. teenager who relies on cannabis oil to treat his epilepsy fears the family may no longer be able to cover the cost of the private medication.
Rachel Rankmore told
that the family pays £1,200 ($2,021) for her son’s medication.
Bailey Williams, 19, has a rare form of epilepsy known as Lennox Gastaut Syndrome that can cause hundreds of seizures a day. His mother said that more than 20 pharmaceutical drugs, vagus nerve stimulation and a ketogenic diet failed to improve his symptoms. Some of the drugs also triggered worrying side effects like tremors, confusion and skin rashes.
With the inclination toward health issues, CFAH comes out as a trustworthy platform with several features that allow you to write journals on health, compare wellness brands by experts, and learn facts and scientific research.
What has worked is Bedrolite, a CBD oil manufactured by Netherlands-based Bedrocan.
Williams started receiving the medication about five and a half years ago and “everything turned around from that point,” his mother said. “No weekly ambulances, no weekly stays in hospital, no huge doses of drugs. His rescue meds were very few and far between and he started to grow and become more healthy.”
The U.K. legalized the medical use of the drug in 2018, but only three prescriptions have been issued since then. According to the U.K. government, only specialist doctors can prescribe “unlicensed medicines,” which effectively means the drug is not covered under the U.K.’s National Health Service (NHS) and must be obtained privately.
In the past, the family has hosted golf days, sponsored walks, cycle rides and a number of other events to raise funds to cover the cost of the medication, but the pandemic put an end to that.
“It’s a complete emotional roller coaster and I’m just so worried about it coming to a stop if we don’t get my son and those in his position the medicine they need on the NHS,” Rankmore said, adding that the government should allocate funds to effected families until the medication is made available.
“We’re talking about people’s lives here. If Bailey had to come off his medication, the only other treatment available to him would be palliative care. He would have to be taken into hospital and have his body shut down,” she said.
“I just can’t get my head around it. Being able to afford this treatment is so, so important. My son’s life hangs in the balance without it.”
In 2018, Alfie Dingley became the first person in the U.K. to receive a permanent medical cannabis licence.
Dingley’s mother, Hannah Deacon, told
earlier this year that there remains “a huge amount of stigma around the word cannabis.”
Both Deacon and Rankmore are members of End our Pain, an advocacy group campaigning for the U.K government to remove barriers to access medical cannabis.
“There’s no funding pathway. There’s no desire to prescribe it,” Deacon said, adding that many U.K. families are paying upwards of £2,000 ($3,400) a month for medical cannabis products.
“You have people with very seriously ill children who have very, very difficult lives who are trying their best to keep their children alive and out of the hospital. And they’re having to also then fundraise thousands of pounds every month to keep getting a prescription for a product that works for them,” Deacon said. “It’s disgraceful, to be honest. It really is disgraceful what the government is doing here.”
Subscribe to
, a new weekly newsletter from The GrowthOp.
