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“BPNA rules deny safe treatment for children”– clinicians write open letter to Sajid Javid

Fifty medical professionals have signed an open letter expressing their concerns over the BPNA guidelines

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Sajid Javid - medical cannabis patients

Fifty medical professionals have signed an open letter expressing their concerns over the BPNA’s guidelines on medical cannabis.

The Medical Cannabis Clinicians Society (MCCS) has issued an open letter to the Secretary of State for Health, Sajid Javid to highlight their concerns about the British Paediatric Neurology Association (BPNA) guidelines, which they feel deny medical cannabis treatment to children with epilepsy.

Fifty medical professionals have signed the letter, which states that there is now ‘overwhelming evidence of the efficacy of medical cannabis for children with treatment-resistant epilepsy’. It highlights that children are being denied NHS prescriptions for cannabis-based medicines despite the evidence showing it could be life-transforming for them.

It goes onto say that the BPNA appears to be opposed to the prescription of medical cannabis products and want yet more evidence concerning the safety and efficacy, alongside concerns about the unlicensed nature of the medications.

BPNA guidelines published in 2018 on cannabis‐based products for medicinal use for children and young people with epilepsy, state that the body does not recommend the prescribing of products containing THC due to a “lack of evidence of safety or efficacy.”

The letter states: “The British Paediatric Neurology Association (BPNA) declares itself to be the professional medical body for paediatric neurologists. Apart from a specific brand (which is not full spectrum) in very limited circumstances that has been through the conventional licensing system, the BPNA appears to be very much opposed to the prescription of medical cannabis products. From what we understand, they appear to want to see more evidence about safety and efficacy and are concerned that these ‘full spectrum’ products are unlicensed.”

BPNA letter

The letter highlights that the BPNA by deterring private prescriptions and blocking NHS prescriptions forces vulnerable families into fundraising.

There are currently just two paediatric neurologists prescribing for children with one due to retire in October. The authors are concerned that this would mean those with prescriptions may suffer rebound seizures if they cannot find someone to prescribe.

They wrote: “The BPNA is effectively denying sick children access to an efficacious and safe medicine that may well reduce or even stop their seizures and immeasurably improve their quality of life and reduce their chance of death. It is deterring private prescriptions and is playing a part in the almost total block on NHS prescriptions. This block in turn is forcing many very vulnerable families to have to fundraise thousands of pounds a month to source the medicine privately.

“Our concern is that what appears to be a deeply entrenched and dogmatic position on this subject from the BPNA is effectively denying sick children access to an efficacious and safe medicine that may well reduce or even stop their seizures and immeasurably improve their quality of life and reduce their chance of death. It is deterring private prescriptions and is playing a part in the almost total block on NHS prescriptions. This block in turn is forcing many very vulnerable families to have to fundraise thousands of pounds a month to source the medicine privately.”

BPNA: A pile of piles, bottles and CBD oil. A dropper lies on its side with yellow oil in it. There is a cannabis leaf on the left side

Action required

The MCCS outline four steps in the letter that they feel the BPNA and the wider paediatric community should take. These include: consider real-world evidence, treat individuals case by case, recognise the recently clarified NICE guidelines and advocate for full-spectrum medicines when appropriate.

It also suggested that they take up the MCCS offer of training.

It added: “Take into account the recently clarified NICE guidance which now recognises that cannabis prescription is reasonable if all else has failed and a child has responded to the medicine. Patients in this population can be prescribed cannabis-based medicinal products if the healthcare professional considers that that would be appropriate on a balance of benefit and risk, and in consultation with the patient, and their families and carers or guardian…. There is no recommendation against the use of cannabis-based medicinal products”.

The letter finishes with two suggestions to Sajid Javid, that he support their calls to the medical paediatric community and works with the NHS to remove the barriers to accessing medical cannabis on prescription.

Read more: MS patients denied access to life-changing cannabis drug

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