Charlotte Caldwell watched powerlessly as her desperately ill son’s medication – medical cannabis – was snatched from her by border officials.
Seven years ago, Caldwell was returning from the US and Canada with son Billy when UK officials seized his cannabis oil and five days later he suffered back-to-back seizures. But out of this low point for Billy and his mother came a campaign that would ultimately help to change the law and see him granted a lifetime NHS prescription for the medication.
Caldwell went public over her struggle to treat her 17-year-old son’s epilepsy with cannabis oil after the border officials took the medication. Now Caldwell, 51, says her son’s life has been transformed by cannabis and she wants other children struggling with life-threatening epilepsy to benefit.
From having 300 seizures each day she says her son, who also has severe autism and developmental delay, has had just two thirty-second fits in over two years thanks to the treatment.
Epilepsy is more common in autism, with research suggesting around 20% of people with the condition suffer seizures. It is believed anywhere between 20% and 32% of people with a learning disability also have epilepsy.
Caldwell said, “Billy is now going to school, he’s horse riding, he’s swimming, he’s living his best life.”
The campaigner, from County Tyrone, Northern Ireland, added, “Billy was completely depleted — just lying in his special needs buggy drooling from the side of his mouth. He was tube fed. He couldn’t pick up a cup or a toy.”
Caldwell is fighting for around 90 UK families paying anything between £700 and £2,000 per month for cannabis oil to receive it for free.
She has set up the not-for-profit group I Am Billy to spearhead this fight, which has seen her trying to convince cannabis oil manufacturers to gift the medication to the families’ children.
Caldwell said, “Their children wouldn’t be here. They would die (without the medication). I can tell you now because they’re like Billy — very, very serious cases.
“These are children that have been through numerous conventional treatments that haven’t worked — even surgery. Even epilepsy brain surgery that hasn’t worked where they have taken away part of their brain.”
The UK government introduced legislation allowing cannabis prescriptions in November 2018 following campaigning by Caldwell and Hannah Deacon, the mother of Alfie Dingley.
Deacon says her son, who has a rare form of epilepsy, suffered 150 seizures a month before he had the drug prescribed on the NHS.
Caldwell maintains local NHS care boards are blocking doctors from prescribing. She cites a lack of clinical trials supporting the drug as a safe and effective medication that mean it will go on being classed as unlicensed medicine. Caldwell believes around 35,000 UK families could benefit, but says more clinical trials are needed to broaden access.
Caroline Gisbourne’s 15-year-old son Mitchell has severe epilepsy, autism and a learning disability. Single mum and full-time carer Gisbourne, 50, from Cornwall, says her son’s Satoline cannabis oil costs £2,500 per month and she simply cannot afford it.
Gisbourne and Mitchell are one of the 90 families Caldwell is fighting for. At the moment, Satoline manufacturer Cellen is providing the drug to Gisbourne for free. But this supply will last only another two months and then Gisbourne will turn to crowdfunding to try to pay for her son’s medication.
Before he went on the oil Gisbourne says Mitchell was having 30 seizures per day, but has now had only three in 55 days.
She said, “If there wasn’t (cannabis oil) it was just we were living with a life-limiting condition and I’d wake up every morning and wondering if he’s still alive”.
GW Pharmaceuticals has two medical cannabis products available on the NHS — Epidyolex and Sativex.
Epidyolex has been recommended for seizures linked to severe epilepsy for children over two years old, while Sativex is used to relieve spasticity associated with multiple sclerosis.
Nabilone, a synthetic form of cannabis made by Bausch Health, is also available on the NHS to treat severe vomiting caused by chemotherapy.
Caldwell says GW Pharmaceuticals invested heavily in a trial to establish the safety of Epidyolex and Sativex and it is now up to other drugs companies to follow their lead.
Campaigners like Caldwell maintain that whole-plant cannabis oil is the most effective way to treat refractory epilepsy — which is the form of the condition that is unresponsive to anti-seizure medication.
Cannabis oils containing only cannabidiol (CBD) in very small amounts, which is the non-psychoactive substance found in the plant, are classed as food supplements and can be bought in UK health food stores.
Whole-plant cannabis also contains tetrahydrocannabinol (THC), which is the hallucinogenic or psychoactive compound in the drug. However, Epidyolex does not contain THC, but is highly purified and is produced only with CBD.
Caldwell treats Billy using Aurora, a whole-plant cannabis oil, while Mitchell’s medication also contains THC and CBD.
Medical cannabis industry figures claim that 1.8 million patients rely on illegal cannabis for health problems, while 20,000 get the drug legally through private treatment and a further 1,000 on the NHS.
The Department of Health and Social Care (DHSC) says the most significant barrier to unlicensed cannabis treatments is a lack of evidence on their quality, safety and clinical and cost effectiveness. This is why doctors are reluctant to prescribe, says the DHSC.
Researchers from the University College London and Great Ormond Street Hospital for Children are working together to produce the high quality evidence the DHSC is insisting on.
They will run the first ever randomised controlled trials funded by the National Institute for Health and Care Research (NIHR) and NHS England. The trials will look at the effectiveness of cannabis in the treatment of refractory epilepsy in adults and children.
The study team are now looking for a commercial supplier of the two treatments that will be trialled — one containing CBD and the other a combination of CBD and THC.
The DHSC is encouraging drug companies to put forward their products for the research, with the trials set to start recruiting as soon as possible and the research designed to inform NHS funding decisions across the UK.
A DHSC spokesperson said, “We are working closely with partners to establish clinical trials to test the safety and efficacy of more cannabis-based products for medicinal use to inform future NHS funding decisions.”
