Up to a third of UK children receiving end-of-life care may be using cannabis

Many UK families are accessing cannabis for children with cancer and other life-limiting illnesses, say experts, without any support from their doctors.

Despite cannabis not being prescribed for childhood cancer, even through private clinics, many families in the UK are thought to be accessing it illicitly without the support of medical professionals.

In a recent webinar exploring the use of cannabis in paediatric oncology, featuring clinicians from the UK and Canada, it was revealed that up to a third of patients with cancer and other life-limiting conditions may be using cannabis.

Data collected through pre-clinical surveys distributed through the NHS and end-of-life hospice services suggests that up to 30% of this patient group are using some form of cannabis-based product, according to Dr Bob Phillips, a senior lecturer at the University of York and an honorary consultant in paediatric and teenage oncology.

“In the children’s long-term and life-limiting conditions’ arena, what we call hospice care, there’s a lot of surveys that have been done around what people are using and how they are using it,” he said.

“We’re seeing that maybe 30% of those patients with a life-limiting condition are using some form of cannabis-related products.”

The webinar, which was hosted by the Canadian Collaborative for Childhood Cannabinoid Therapeutics (C4T) in collaboration with Medcan Support, on Wednesday 23 November, explored how doctors overseas are taking a harm-reduction approach to support families battling cancer. 

Recent years have seen an increase in the use of cannabis for symptom control, but also for anticancer effects. Cross-sectional studies and real world data show that patients who have been using cannabis report some improvements in nausea and vomiting, reduced appetite, pain, insomnia and anxiety.

The prevalence of cannabis use in childhood cancer 

A Canadian study, led by Dr Sapna Oberoi, found that 97% of paediatric oncologists and palliative care physicians had provided care to at least one child using cannabis for symptom management within the last six months. More than half (57%) had seen a patient who was using cannabis as an adjunctive anticancer treatment. 

According to Dr Oberoi, who took part in the webinar, most of the clinicians surveyed valued cannabis as a therapeutic in childhood cancer but still had concerns, including around the lack of high-quality evidence for its benefits and side effects.  

A further study conducted in the Canadian province of Manitoba revealed that 22% of paediatric oncology patients were using cannabis.

Clinicians in Canada can authorise cannabis but are not permitted to legally prescribe it for children, and therefore have no access to dosing guidance or regulated medical products.

“More and more families are asking about using cannabis,” said Canadian paediatric oncologist Dr Rod Rassekh.

“I’ve seen the most interest among the brain tumour group, where I think there is probably among the highest rates of [cannabis] use, probably due to the poor prognosis of some of those tumours. 

“It’s in those hard-to-treat cancers where parents are, quite appropriately, trying to find anything that can help their child, both from a symptom-control point of view because they are often the ones that are more symptomatic, but also in desperately trying to find a cure for their child.”

After seeing two children admitted to hospital with severe adverse effects as a result of consuming illicit cannabis, Dr Rassekh encouraged the hospital he was working at to adopt a harm reduction approach. 

“This is happening in the shadows. There could be drug interactions and safety concerns we do not know about; there may be some effects we’re not documenting; there may be benefits that we are not documenting. We have to take away that stigma and allow families, if they’re going to do it, to do it in the open and let their oncologist know,” he explained.

“We discussed how we could do this in a harm-reduction model. There were lots of barriers; we had to come up with documents the parents would sign that said we were not condoning medical cannabis use in the hospital, but we were able to actually change policies.” 

He added: “It was uncomfortable as physicians. We don’t know if it’s safe; we don’t know the long-term outcomes and not all oncologists were on board. There was pushback, even among my own colleagues.”

The need for high-quality evidence 

In the UK, Dr Phillips says he is occasionally asked about medical cannabis by his patients. 

While he hasn’t had any experience of prescribing unlicensed cannabis medicines, he has had success prescribing Nabilone, an isolated form of cannabis-based medicine available on the NHS for refractory nausea and vomiting in cancer patients.

“I get asked about cannabis products every now and then, primarily from patients who have relapsed or who have an essentially palliative diagnosis,” said Dr Phillips.

“I haven’t a clue if it works for cancer or not because the trials haven’t been done, but I can tell you that for the refractory nausea and vomiting, particularly in the teenagers, they respond well.”

However, as the chair of the Drugs and Therapeutics Panel at his hospital, Dr Phillips says much more high-quality evidence is needed around its safety and efficacy before other cannabis-based products are made widely available on the NHS.

“We have to demonstrate safety, efficacy and the funding stream,” he explained.

“We ask the same questions of all drugs; can you bring evidence of safety? Can you bring evidence of efficacy, particularly within paediatrics? Can you bring dosing regimens that work for a variety of patients? Without that information, you’re not going to get it [prescribed] out of our hospital.”

Dr Phillips continued: “What we need is decent quality evidence. It doesn’t have to be from the UK, but it has to be decent quality evidence to back up some of these things that people want it to work for.

“Paediatric oncology grew out of research, we’ve always led with trials, particularly when it comes to the anticancer agents. Most of them have great effectiveness in the petri-dish, but it’s only when we put it into the real situation of incredibly complex children’s cancers that we see whether it really makes a difference or not.”

Clinicians need to accept that families are using cannabis

In the meantime, advocates are calling for UK doctors to follow Canada’s harm-reduction approach and accept that families may be using cannabis alongside conventional treatments, particularly in palliative cases. 

Medcan Support was founded to help parents and carers of children with epilepsy on their journey to accessing medical cannabis. Recently, though, the organisation has been contacted by families dealing with paediatric cancer who feel they have to hide their use of cannabis from doctors out of fear of the potential repercussions.

“Families in these desperate situations are made aware, through patient communities and meeting other families in hospitals or similar settings, that, anecdotally, cannabis can be supportive in easing pain and alleviating comorbidities with cancer-related illnesses or diseases,” says Medcan Support co-founder Matt Hughes.

“A parent is going to go to any length to try and support their child to the very end, and cannabis time and time again has been shown to be an effective adjunctive therapy alongside traditional treatments.”

Medcan Support provides support and education for hundreds of families across the UK but is run solely by volunteers and is currently reliant on donations to ensure it can continue to offer its services.

“It is no substitute for being able to speak openly and honestly with a health professional and have clinical oversight of your child’s care,” says Mr Hughes.

“What we need is for clinicians to support families,” he continues.

“Rather than turning their backs and waiting on clinical evidence, like Canada, we need a harm-reduction approach where clinicians accept that families are going to be using cannabis. Sadly, in the UK, that’s only going to be through illicit means, but, regardless, families should feel supported by their clinicians to be able to have that open dialogue within the NHS or privately.”

Mr Hughes adds: “Families in these desperate situations should be making memories with their children, not worrying about how they can access this and relying on drug dealers. They need to be fully supported, especially in an end-of-life situation.”

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