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Charlie Hughes’ family drop their court case against NICE

a Family with a child all smiling at the camera

We are greatly encouraged by the news that NICE updated their guidelines around medical cannabis for children with severe epilepsy. The clinical guidance now clearly states:

‘There is no recommendation against the use of cannabis-based medicinal products’

– meaning that Matt and Ali Hughes were able to drop their court case over the prescribing guidelines for their son Charlie.

Professor Mike Barnes, Clinical Director for Drug Science’s medical cannabis observational study, Project Twenty21, said:

“I am very pleased that NICE has clarified their previously restrictive guidance. I hope that now those doctors who were hiding behind the NICE guidance, particularly members of the BPNA, can now begin to prescribe this medicine which can be life-changing for so many people.”

Drug Science, led by Prof David Nutt, provided much of the evidence that was used in the court case which helped bring about the update to the NICE guidance announced this week.

The following is a summary of our arguments against the NICE position.

Sole reliance on randomised controlled trials (RCTs) is perverse because:

  1. There are many other data sets e.g. our recent Drug Science paper which looks at the cases of 10 children.

  2. RCTs do not predict a response in individual patients – only clinical exposure can demonstrate if a child will respond – and our paper shows that they have. Despite this, the NICE guidance implied that these facts are irrelevant.

  3. The previous head of NICE, Sir Michael Rawlins, in his 2008 paper pointed out that RCTs provide one of a number of ways to evaluate the efficacy of medicines, yet the current NICE team chose to ignore this.

  4. Parents can’t wait for an RCT which may never come because the syndromes are too rare, some are undiagnosed which prevents a traditional trial, pharmaceutical companies are unlikely to conduct RCTs for medical cannabis which cannot be patented, and the NIHR hasn’t yet managed to set up a study.

Ignoring non-English language data was perverse given the importance of the topic, when the lives of children are at stake and parents’ sanity is at risk.

Ignoring international registries that have useful data was perverse.

Read the full witness statement provided back in September 2020 by Professor David Nutt here.

How does this affect access to medical cannabis?

The amendment to the legislation made this week opens the way for doctors to start prescribing a medicine made legal back in November 2018, that is still so haunted by stigma reaching back in time, even beyond the Misuse of Drugs Act of 50 years ago. Despite being legalised for medicinal purposes in the UK almost 2 and half years ago, doctors have lacked both education and support from the medical profession as well as the confidence as individual clinicians to make the leap to prescribe – with only three NHS prescriptions issued in that time and relatively low numbers issued through private clinics. Drug Science launched Project Twenty21 last year to help open up access to medical cannabis to more people who could benefit from it by capping the monthly prescription cost for patients.

Treating epilepsy with medical cannabis through Project Twenty21

Project Twenty21 already includes Adult Epilepsy in the list of indications it covers, and in the coming months Drug Science aim to expand that to include Childhood Epilepsy. This is dependent on there being enough paediatric neurologists willing to prescribe medical cannabis in the UK. We urge any clinicians interested in joining the project as a prescriber to find out more here or email us directly:

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