‘Our son could die without oil that costs us £1,200 a month’
Teenager Bailey Williams’ desperate parents are calling on government to help fund life-changing cannabis treatment. John Jones reports
PARENTS of a teenager with severe epilepsy say they fear for their son’s life if they are no longer able to afford life-changing cannabis treatment which they say is “financially crippling” them.
Bailey Williams, 19, suffers from epilepsy, which can cause him to have hundreds of seizures a day, but his condition was greatly improved when he started taking cannabisbased medication.
Without the oil, Bailey, who lives with his family in Fairwater in Cardiff, could suffocate or hurt himself falling over, meaning he can never be left alone. His parents also fear his body may need to be “shut down” in hospital if he comes off the treatment.
However, while medical cannabis was legalised in the UK and made available on prescription in 2018, many families like Bailey’s have been forced to go private to access the treatment.
Pressure group End Our Pain – of which Bailey’s parents, Rachel Rankmore and Craig Williams, are members – says only three NHS prescriptions have been issued in the UK since the law change.
Now, the teenager’s desperate parents are calling on the UK and Welsh governments to allocate emergency funds to families in their position, as they fear losing their son if they are forced to pay the £1,200 needed to obtain the oil each month.
“It’s absolutely crippling,” said Rachel. “Bailey just wants to go out and enjoy his life, and that will all be taken away from him when we run out of money for the oil.
“We are so tired of fighting for this, and the suffering is just immense. If the money runs out, it will really take the wind out of our sails, in fact it will shatter our family into a million pieces. We’ve both just had enough, we shouldn’t have to plead for our son’s life. Why can a private doctor prescribe it, but an NHS doctor can’t? It really doesn’t make sense, it’s so cruel.”
Before being prescribed cannabis oil privately, Bailey, who has the rare form of epilepsy known as Lennox Gastaut syndrome as well as learning difficulties, tried scores of drugs. Many had side-effects including tremors, hair loss, confusion, poor coordination, skin rashes, hallucinations and drooling.
“He tried over 20 pharmaceutical drugs, vagus nerve stimulation and a ketogenic diet,” said Rachel. “He got taken into hospital weekly and this one week they just couldn’t stop the seizures. So they loaded him up and basically shut his body down.
“The conversation with the neurologist was, ‘I’ve got no more drugs left to try, I don’t think the Bailey that’s going to wake up will be the Bailey you know’, and he warned me that he could have brain damage from the seizures or the drugs.
“It was at that point that we read about the story of Charlotte’s Web – a little girl in Colorado, Charlotte Figi, got put on this oil and she became seizure-free. We’d been researching for a number of years and we just thought, ‘We’ve got nothing left to try – we’ve got to do something for Bailey now’.”
Since being started on cannabis oil Bedrolite five-and-a-half years ago, Bailey’s life and that of his family has changed completely.
“Everything turned around from that point,” said Rachel. “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. Most importantly, he was able to be a young boy, instead of being in a hospital bed.”
However, as the treatment was only hemp and not full extract oil, it stopped working after two years. After being inspired by a story of a family in a similar situation, Rachel and Craig knew what they had to do.
“We saw the story of Hannah Deacon and Alfie Dingley on This Morning about getting access to full extract oil, and we knew that’s what Bailey needed,” said Rachel.
Bailey’s parents joined the pressure group End Our Pain – made up of families battling for legal access to medicinal cannabis – and the campaign saw the law changed in November 2018 as the medical use of the drug, when prescribed by a registered specialist doctor, was legalised in the UK.
However, only a “specialist doctor” and not a GP can prescribe what the UK Government terms “these unlicensed medicines”. In practice, it is not available on NHS prescription, with only three such prescriptions issued since the law changed.
“We thought it was job done,” said Rachel. “But really, the fight was only just beginning.”
Forced to obtain the oil privately, Bailey’s family had to hold fundraising events and a lotto to raise the money needed.
But the pandemic has left them unable to hold events and many of their lotto supporters have been affected by job losses or furlough.
“Everyone has rallied around us as we’ve done lots of various events to raise the money,” said Rachel. “We’ve done golf days, sponsored walks, cycle rides, lots of things.
“But during the pandemic, it’s been such a struggle, because obviously people were out of work and we couldn’t do the fundraising events due to all the restrictions.”
As money got tighter, Rachel and Craig tried another version of cannabidiol (CBD), Epidyolex, which was available on the NHS.
“Bailey is really sensitive to drugs and we were really worried about him going on it,” said Rachel. “But we also didn’t want him to be without any CBD at all, nor did we want him in hospital during the pandemic, so we thought we had to try it. Within weeks, though, he lost all his faculties again, he was in bed at home, his mouth swollen, he couldn’t walk or talk and he was having a hundred seizures a day again.
“We gave it six weeks and then we just said, ‘No, we can’t put him through this’. We knew we were going to lose him if we did.”
Family members rallied around Rachel and Craig to donate money and tide them over until they could begin fundraising.
“When we were able to get back on the oil again, the whole Bailey came back,” she added. “We know that this oil is what’s best for him, but fighting for it is so draining.
“It’s a complete emotional rollercoaster 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.”
Last week saw Bailey’s parents and other members of End Our Pain lobby for action at Downing Street, as they presented a petition calling for the UK Government to provide an emergency compassionate fund for patients like the 19-year-old.
“There needs to be funds allocated to families like ours until the oil is available on the NHS,” said Rachel. “It would be a drop in the ocean compared to what these governments have spent during this pandemic. 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.
“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.”
Earlier this year, the National Institute for Health and Care Excellence (NICE) clarified its guidance to say health professionals could consider prescribing cannabis-based treatment “where clinically appropriate in an individual case”. It is only recommended for use in a very limited number of cases, including:
■ children with rare, severe forms of epilepsy (Epidyolex);
■ adults with vomiting or nausea caused by chemotherapy (nabilone); and
■ adults with multiple sclerosis (Sativex).
A Welsh Government spokesperson said: “In accordance with the recommendations of the National Institute for Health and Care Excellence (NICE), cannabidiol (Epidyolex) is already routinely available for the management of some forms of severe refractory epilepsy.
“We expect healthcare professionals to take account of all evidence and recognised guidelines before prescribing any medicine.
“The decision to prescribe unlicensed cannabis-based medicinal products is for individual prescribers in consultation with the patient, their families, carers or guardian.
“Where an NHS healthcare professional wishes to prescribe these products, arrangements are in place for the NHS to consider and where appropriate meet their cost.”