“Breaking down barriers”: Parents welcome new NICE guidelines on medical cannabis

The parents of three-year-old Charlie Hughes have welcomed new guidelines clarifying that clinicians can prescribe medical cannabis.

Matt and Ali Hughes have reached a settlement in their fight with the UK’s health regulator NICE (National Institute for Health and Care Excellence).

On Friday 26 March, NICE has issued further guidance making it clear that clinicians can prescribe medicinal cannabis in appropriate cases. 

The Nowrich couple brought a legal challenge against the regulatory body in 2020, after their local NHS Trust indicated that guidance on cannabis-based medicines prevented clinicians from prescribing the medicines to their son, Charlie. 

Charlie has a rare form of treatment-resistant epilepsy called West syndrome, which saw him suffering up to 120 seizures a day and on a regime of four anti-epileptic drugs at any one time before they discovered cannabis medicines in May 2019.

The couple have seen Charlie’s life transformed by the treatment, with his dramatic reductions in his seizures and developmental improvements, but have been unable to access the medicine on the NHS.

In November 2019, NICE issued guidance stating that there was insufficient evidence to make a population-wide recommendation for the use of cannabis-based medicines in patients with severe epilepsy. 

Matt and Ali’s legal challenge set out to clarify this and ensure that doctors are aware that they are not barred from prescribing medicinal cannabis. 

They wanted clinicians and NHS decision-makers to recognise these patients as individuals with treatment-resistant refractory epilepsy and that a population-wide recommendation from NICE is not needed to prescribe on an individual basis. 

NICE has now agreed to issue further guidance clarifying the guidelines it released in 2019 and Charlie’s judicial review claim has been settled on this basis. 

The claim was due to be decided in court later this year. 

Matt and Ali have welcomed the move, which offers hope to dozens of other families denied cannabis medicines on the NHS.

“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 said in a statement.

“This clarification makes it very clear that in individual circumstances clinicians can prescribe if they just weigh up the benefits versus risk.”

However, this is just one of several hurdles which are currently preventing Charlie and other patients from accessing their medication on the NHS.

The Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) which is made up of leading neurologists was launched in 2020 to deal with complex epilepsy cases, but so far has only recommended the continuation of cannabis-based medicines for one child.

Charlie was referred to RESCAS but refused a prescription for cannabis on the basis that there was no evidence of its efficacy or safety.

“There isn’t any one fix, especially in paediatrics, it’s about breaking down all these barriers and trying to understand why this is continuing to be blocked,” Matt told Cannabis Health.

“All our focus now is on getting clarity from RESCAS and the British Paediatric Neurology Association (BPNA) as to what it actually takes to get a prescription for a medicine which is helping so many children.”

“No, we don’t fully understand everything about cannabis at the moment, but if a child has an 80 percent decrease in seizures on cannabis medicines, that’s a really good outcome in relation to the small risks of THC.”

He added: “I’d like to see the neurologists standing up for the child and actually looking at the evidence that’s there in front of them. 

“It’s going to be a long process but this is a very good step moving forward.”

The couple thanked their counsel Tom Cross and Katherine Taunton, and solicitors from Irwin Mitchell and Herbert Smith Freehills, who have spent hours supporting the case.

Hannah Deacon, mother of Alfie Dingley and director of the Medical Cannabis Clinicians Society, was also instrumental in bringing the case to court.

NICE’s clarified guidance states as follows (among other things): 

“3.2 The fact that NICE made no such population-wide recommendation should not…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 medical products if the healthcare professional considers that it would be appropriate on a balance of benefit and risk and in consultation with the patient, and theirfamilies and carers…

3.3 There is no recommendation against the use of cannabis based medical products.”