New guidance published this month by the BPNA on the prescribing of medical cannabis, has been described as ‘unethical’ by experts.
The British Paediatric Neurology Association (BPNA) this month updated its guidance for clinicians on the prescribing of cannabis-based medicines for children and young people with epilepsy.
It’s the first time the framework has been updated since 2018 and comes following the amendments to the NICE guidelines earlier this year, clarifying that clinicians can prescribe medicinal cannabis in appropriate cases.
The BPNA’s view that it must be a paediatric neurologist who prescribes, is not supported by national guidance, with the Medical Cannabis Clinicians Society (MCCS) recently highlighting that it is “legal and acceptable” for a paediatrician with an interest in epilepsy to prescribe, under a shared care arrangement with a trained cannabis physician.
This, along with its insistence that there is “no evidence” for the safety and efficacy of medical cannabis products and “concerns” about the effect of exposure to THC on the developing brain, is widely blamed for the lack of access to NHS prescriptions for children with epilepsy.
Blocking private access
But while many would hope any new guidance would make things easier for doctors wishing to prescribe cannabis-based products, the BPNA has been accused of making things worse for patients and even trying to “block private access”, as well as that through the NHS.
The BPNA has now put the onus on the prescribing doctor to ensure families can afford to carry the financial burden of accessing this medicine privately.
“If a paediatric neurologist prescribes an unlicensed CBPM in private practice they should also be certain that the family can sustain the cost of ongoing private prescriptions,” the BPNA states.
“We consider it unethical to initiate a treatment in private practice for which funding is not available in the longer term. The NHS is unlikely to meet the cost of future prescriptions of an unlicensed medicine that has no Level 1 evidence of efficacy and safety. “
It comes following reports of parents being forced to sell their home and rely on fundraising to pay for these medicines privately, an average cost of £2,000 per month.
The Medical Cannabis Clinicians Society (MCCS) has slammed this move as “totally unacceptable” and accused the BPNA of driving patients to the black market with its “outdated” stance.
Professor Mike Barnes
Its chair, Professor Mike Barnes, told Cannabis Health: “It is not in any way standard practice for a doctor to enquire whether a family can support funding in the long term. Such an inquiry is unethical and such a situation would of course not arise if a doctor prescribed it on the NHS, as is legal.
“The stance of the BPNA is driving patients and their families into private practice and in some cases into the black market.”
Hannah Deacon, director of the MCCS and mother to Alfie Dingley, agreed, saying this would leave patients denied access in every avenue.
“The BPNA now appears to be trying to shut down private access as well as NHS access,” she said.
“This new guidance is placing all the onus onto the private doctor to be responsible for ensuring that families can afford to pay for the prescriptions before they’re issued. There would be no way that any private doctor would do that for any other medication. This guidance causes harm and all it’s going to do is push people to the black market.”
Real world evidence
The BPNA claims that the prescribing of cannabis medicines is “largely untested”, despite the fact that there are now over 10,000 patients prescribed for in the UK including around 200 children with treatment-resistant epilepsy.
The MCCS also points out that there is a “significant volume of efficacy and safety data” in the form of real world evidence.
“Members of the BPNA have been trained in the prescribing of pharmaceutical products which have RCT data behind them,” Deacon said.
“What we would urge them to understand is that this is a botanical medicine with many hundreds of compounds which cannot go through the randomised control trial process effectively, and real world evidence very much has its place here to prove safety.”
The impact of not prescribing
Prof Barnes added that the new guidance has failed to recognise the “downsides of not prescribing” which include a poorer quality of life, brain damage and even death.
“There is no recognition of the fact that these children have uncontrolled, drug resistant epilepsy by definition. They have a poor quality of life, often difficulties in school and in play and at home and the whole family suffers from the consequences,” he said.
“Recurrent seizures are damaging to the developing brain and such severe seizures are associated with a risk of status epilepticus and death. Every avenue must be explored in an attempt to alleviate the seizures. Cannabis is not a cure-all and is not the right medication for every child (or adult). However, it has been shown to have efficacy in many cases and is generally remarkably safe.”
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