Leading doctors and scientists have responded to new guidance from the BPNA, with a call for UK paediatricians to recognise the value of medical cannabis for childhood epilepsy.
Experts have published a damning critique of new guidance issued by the British Paediatric Neurology Association (BPNA) in October, on the prescribing of cannabis-based medicines for childhood epilepsy.
The Medical Cannabis Clinicians Society (UKMCCS) and the UK charity for drug reform, Drug Science, say they fundamentally disagree with this guidance, which they have described as “outdated”, accusing the BPNA of “ignoring” the evidence.
There is currently only one clinician prescribing to over 50 children with epilepsy in the UK and they are no longer taking on new patients.
Campaigners have described the system as in ‘crisis’. With no more children currently able to access a prescription, seriously ill patients are at real risk of imminent harm, say the UKMCCS and Drug Science.
The new BPNA guidance, published in October, marks 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.
Prof Mike Barnes, chair of UKMCCS
However, the BPNA has refused to change its stance on the subject, continuing to claim that there is “no evidence” for the safety and efficacy of medical cannabis products and citing “concerns” about the effect of exposure to THC on the developing brain.
According to UKMCCS and Drug Science, the evidence for low-dose THC exposure causing any long-term brain development problems is “at best minimal” and is “limited to high THC ‘street’ cannabis”.
“We cannot find evidence of long-term cognitive damage when using low THC medical products for epilepsy,” their report says.
“We also point out that taking multiple licensed anticonvulsants can be detrimental and then there is the potential long-term damage caused by multiple seizures.”
The BPNA also states that the prescribing of cannabis medicines is “largely untested”, despite the fact that there are now over 10,000 patients prescribed in the UK including around 150 children with treatment-resistant epilepsy.
“Over 50 countries globally have permitted the use of cannabis-based medicines on prescription. There are now thousands of children with epilepsy who are being prescribed whole plant medical cannabis products, often demonstrating significant improvements in seizure control and overall quality of life,” UKMCCS and Drug Science, argue, going on to summarise several emerging studies regarding full-spectrum cannabis products and childhood epilepsy.
“Unacceptable and unethical”
The BPNA advice that a child should be assessed for epilepsy surgery before a clinician considers prescribing a cannabis-based medicine, has been described as “unacceptable and unethical practice”.
The UKMCCS and Drug Science say that the BPNA guidelines offer no recognition of the fact that the children in question have uncontrolled, drug-resistant epilepsy. They have a poor quality of life, often difficulties in school, in play and at home, and the whole family suffers from the consequences.
In their commentary, the organisations point out that recurrent seizures damage the developing brain and are associated with a risk of status epilepticus and death. They believe that clinicians must explore every avenue in an attempt to alleviate the seizures.
Professor Mike Barnes, chair of UKMCCS, commented: “Professor Helen Cross [former president of the BPNA] was the first clinician to prescribe an unlicensed cannabis-based medicine for childhood epilepsy in 2003. That was a brave and correct move when a child was in extremis. It is a pity that the BPNA’s current executive committee members have reverted to an old and outdated paradigm of efficacy to the clear detriment of many thousands of children in the UK.
“The Society will teach any paediatric doctor – free of charge – how to prescribe medical cannabis products and provide ongoing mentoring and support.
We call for recognition of the value of unlicensed cannabis-based medicinal products by sensible and caring paediatricians in the UK.”
Earlier this year Drug Science published an audit of 10 patients with severe intractable childhood onset, epilepsies which demonstrated a 97 per cent reduction in seizure frequency post-initiation of medical cannabis, as well as a reduction in anti-convulsant drug use.
David Badcock, Drug Science CEO, added: “Our research into childhood intractable epilepsy clearly and consistently shows that the benefits of whole-plant medical cannabis far outweigh any associated risks.
“The parents we have spoken to, as part of this work, find medical cannabis to be the most effective treatment for their child’s condition. Yet the BPNA appear to have ignored our evidence and these experiences. Instead, they seem to be wilfully denying access to legal medicines and causing needless distress for families who deserve better.”
Cannabis Health has approached the BPNA for comment.
Read the full commentary here
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