When their two-year-old son, James, began complaining of headaches in 2017, Jessica and Simon Edwards were living a quiet life by the sea. Jessica worked for her family business, Simon in the travel sector. James loved drawing and jigsaw puzzles. They never imagined a world in which they were growing cannabis in the attic of their Cornwall home.
An emergency MRI scan revealed James had diffuse intrinsic pontine glioma (DIPG), a rare and aggressive brain tumour. He had surgery and a six-week course of radiotherapy, but his prognosis was just eight months.
"The oncologist told us not to go looking for alternatives," says Jessica. "But what parent given a terminal diagnosis is not going to search with all their means so they know they did all they could?"
They were reading about cannabis oil when a friend offered to send them some capsules "just to try". They were willing to try anything.
"There were stories from all over the world," she says. "There were equally as many sites claiming there was no evidence to support claims about cannabis and cancer, but right then, anecdotes were more than enough. When you're given that news, what have you got to lose?"
Jessica squeezed the oil out onto a spoon for James to swallow. They started with a tiny dose, gradually building up until he seemed happy and comfortable. They would stop if they saw any negative effects.
Despite doctors warning that his condition would worsen, James seemed to improve. The tremor in his leg stopped and he appeared so well that other families in the radiotherapy ward would mistake him for a sibling of one of the patients.
"I'm not discounting the radiotherapy, but [cannabis] gave us a semi-normal life," Jessica says. "He was eating, laughing and smiling."
In December 2018, one month after medical cannabis had been legalised in the UK, the couple contacted a private clinic in London, but were told a private prescription would cost them £1,200 a month.
With no NHS access, the most reliable option, they felt, was to grow cannabis themselves and make the oil at home. Under the Misuse of Drugs Act, the possession, supply and cultivation of cannabis remains unlawful except under a Home Office licence.
"It was so hard not being able to say what we're doing," Jessica says.
"Police or social services could have knocked at the door and found the cannabis in the loft. But every time we discussed it there was never a doubt in our minds. We felt in our gut we were doing the right thing."
James finished radiotherapy and was well enough to attend school. He learned to ride a bike and won a competition to have his artwork displayed at the Royal Academy in London. Every three months his hospital scans came back stable.
"It was an amazing quality of life for a little boy with a brain tumour," Jessica adds.
The couple wish they'd been able to give James the oil under the guidance of a clinician, with the reassurance that the products were safe. They felt alone in what they were doing, but a new report published by the charity, Medcan Family Foundation, found almost 400 families in the UK are giving children illegal cannabis products - sourced through drug dealers and overseas sellers - having been unable to access NHS prescriptions. Authors say some were given products with "no certainty on the content" and "dangerous" advice on dosing and drug interactions.
While the new research focuses on epilepsy, Dr Bob Phillips, a senior lecturer at the University of York and honorary consultant in paediatric oncology, estimates up to a third of children receiving palliative care for cancer and other terminal conditions are also using cannabis-based products (based on surveys conducted through NHS and end-of-life services in 2019-2020).
NICE guidelines say doctors on the specialist register can prescribe medical cannabis if they are satisfied there is a possibility of clinical benefit. But in the six years since the law changed, fewer than five children have been prescribed unlicensed cannabis-based products on the NHS. Around 50 are currently prescribed through private clinics, costing tens of thousands of pounds a year.
Experts say a combination of failed policy, little understanding and training in the NHS, and a lack of funding for all but exceptional cases, means access is effectively blocked for thousands of other children. A 2024 study by researchers from Liverpool John Moores University and published in the journal Critical Social Policy, highlighted how "contradictory policies" and "a lack of training for professionals" were resulting in a range of harms including "inequality" among patients.
Hannah Deacon's son Alfie Dingley was one of the first to be prescribed cannabis on the NHS in 2018. Up until then he was living with 150 seizures a week, now he's been seizure free for over four years. She estimates it has saved the NHS over £1 million in hospital costs.
"He's enjoying life and I've been able to go back to work and contribute to society," says Deacon, a co-founder and chair of Medcan Family Foundation.
"He still has a very severe condition, this is not a cure, but it gives him a quality of life that he deserves.
Deacon adds: "We know the government changed the law under pressure from campaigns like mine. Since then there has been a complete block on access due to a lack of support from government, failed policy and a perceived lack of evidence, when we know there is a vast amount of international research which shows this is safe. Whilst we do need more trials, when the law changed it was understood that it would be available on the NHS as an unlicensed special, as many drugs are to children like Alfie. We are calling on the government to urgently review the situation to prevent more families being pushed into criminality to save their child's life."
Katie's* daughter is one of the few who now receives a private prescription, but she previously bought cannabis illegally through another parent in an epilepsy support group. After trying three drops of the oil herself and feeling "dreadful", Katie decided against giving it to her daughter. But she understands why other parents do. Before she was prescribed cannabis, Katie's daughter would suffer up to 100 seizures a day, now she can go up to three weeks without one.
"It's been life-changing," she says. "She's started school and is making progress in all areas. If I was not able to get it legally, I would be sourcing it illegally. I don't know any mother that wouldn't in my situation. You feel guilty that you're breaking the law, but you don't really have a choice."
Maya* says after trying 15 different anti-epileptic medications, it was "sheer desperation" that led her to buy illegal oil for her son.
"I'm not happy about the way I've had to do this," she says. "I would like to be able to have an open conversation with my neurologist, because even though he's on a very small dose, there is always a risk that something could go wrong. It puts so much extra stress on parents when our lives are already so complicated."
Some medical bodies say there is not enough evidence to recommend prescribing cannabis-based medicines in children with epilepsy and as a result many clinicians remain hesitant. In November 2024, the NHS announced two upcoming randomised control trials investigating CBD and THC in drug-resistant epilepsy, which were first promised in 2019.
Professor Mike Barnes, a neurologist and expert in medical cannabis, has concerns that these trials -- which would require some patients to be given a placebo -- may not be suitable for children already benefiting from these medicines. He argues that there is already "firm evidence" from around the world of its "efficacy and limited side-effect profile" in treatment-resistant epilepsy.
In a recent publication Prof Barnes highlighted that globally around 8,000 children have been involved in clinical trials on epilepsy and cannabis medicines. Of these, he says, 10-15 per cent have achieved complete seizure freedom, with over three quarters seeing an overall reduction in seizures.
"This is a remarkable result," he says. "Especially given that they haven't responded to any other medication."
Barnes says regulators need to consider real-world data, as well as the "gold standard" RCTs (randomised controlled trials).
"Overall there is no coherent academic argument against use of cannabis-based medications in children with epilepsy," he adds.
The evidence for the use of cannabis-based medicines in oncology is less clear cut. According to Dr Phillips there is "very little evidence" of any anti-cancer effect, but it may have benefits for managing symptoms and side-effects in patients receiving palliative care, such as nausea and vomiting and sleep. Although in some cases, the side-effects of illegal products themselves can be worse.
"People are doing this from a fundamentally good position and have a really strong belief that it makes a positive difference, but the data isn't that strong," he says. "We need trials to develop an understanding of where the benefits are and how to counsel around side-effects."
According to the Department of Health and Social Care, the "most significant barrier" to accessing unlicensed products on the NHS is the "lack of evidence on the quality, safety, and clinical and cost effectiveness" and says it is down to manufacturers of these products to conduct this research.
A spokesman said: "The NHS is taking an evidence-based approach to unlicensed cannabis-based treatments to ensure they are proved safe and effective before they can be considered for roll out more widely. No one should be buying these illicit cannabis products as they are unregulated and can cause serious harm."
James died in March 2021, aged six, outliving his prognosis by several years. The tumour developed a cyst and his symptoms worsened to the point where Jessica could no longer give him the oil comfortably. His parents believe that while it wasn't a cure, cannabis allowed him a quality of life that meant they could enjoy the time they had together.
"It gave us hope," says Jessica who is now writing a memoir about their experience. "When something comes along and gives you a little bit of hope, you can function again. To think that others in the same situation could benefit from that, it's a crime that they can't access it."
*Names have been changed to protect parents' identities