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Parents of boy with severe epilepsy drop cannabis challenge

NHS ‘clarified’ that doctors should consider unlicensed cannabis-based products on case-by-case basis

The parents of a three-year-old with severe epilepsy have dropped a legal challenge over guidelines they said put doctors off prescribing “life-saving” medical cannabis after they were “clarified”.

Medical cannabis has been legal since 2018 but access on the NHS remains all but impossible due to resistance from doctors and officials However, a private market is growing and families continue to credit it with exponentially reducing children’s seizures.

The National Institute for Health and Care Excellence (Nice) resolved the challenge from Matt and Ali Hughes, from Norwich, before it was expected to be heard in the high court.

Its fresh guidance said: “The fact that Nice made no such population-wide recommendation should not however be interpreted by healthcare professionals as meaning that they are prevented from considering the use of unlicensed cannabis-based medicinal products where that is clinically appropriate in an individual case.

“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 Hugheses, whose action was revealed by the Guardian in August, said: “We are very pleased that finally this court case has come to a satisfactory end and we hope this will give paediatric doctors more confidence in prescribing on the NHS, on an individual basis for patients like Charlie who have shown amazing results on medicinal cannabis.”

They added: “Many families are having to pay huge sums of money every month to keep their children safe and on private prescriptions of cannabis-based medicines which work for them. They should be receiving these life-saving treatments on the NHS.”

In 2019, Nice said medical cannabis could not be approved for use in children with severe epilepsy on the NHS because there was not enough evidence to prove it helps.

Dr Paul Chrisp, the director of the centre for guidelines at Nice, said: “Nice has published a clarification to our 2019 guideline on cannabis-based medicinal products relating to the treatment of severe-treatment resistant epilepsy in children.

“This clarification does not represent a change in our guideline, but both the clarification and the guideline should be taken into account by specialists when making a clinical judgment on prescribing medical cannabis.

“We hope this will make it clearer to specialists, and to children’s parents and guardians, when it might be appropriate to prescribe cannabis medicines to individual patients.”

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