Medical cannabis: no NHS patients have benefited from law change, say campaigners

Guidance criticised

Since 1 November 2018 doctors have been able to legally prescribe unlicensed products containing tetrahydrocannabinol (box). But the British Paediatric Neurology Association’s guidelines recommend against prescribing any product containing this cannabinoid, rendering the law change meaningless if doctors follow the recommendation.

In an open letter the parents of 39 children with intractable epilepsy recently called for the association to review its guidance. “You appear to be ignoring the advice of Dame Sally Davies [England’s chief medical officer], who recommended that it should be made available. . . Where is the duty of care?”2

The campaign End Our Pain has sought access to the drugs for 17 children with intractable epilepsy. Doctors have refused all of them prescriptions, its director, the public relations consultant Peter Carroll, told The BMJ.

Last year End Our Pain publicised the case of Alfie Dingley, a boy with intractable epilepsy whose case was instrumental in changing the law. His frequent seizures were fully controlled, and steroid use stopped, when he took full cannabis plant preparations in the Netherlands, which were illegal to prescribe in the UK.

Media attention led to Dingley being the first person to receive such products in the UK before the law changed, under an extraordinary licence.3

Barnes told The BMJ that, in addition to Dingley, he knew of only five other patients who had been prescribed unlicensed products containing THC, including Billy Caldwell, another child with severe epilepsy whose publicity spurred the legal change.

All five patients have obtained the products through private prescriptions, he said.

NHS England is monitoring the prescribing of cannabis based medicinal products and expects data to be available by the end of March 2019, said Steve Brine, parliamentary undersecretary of state for public health and primary care, in a reply to a parliamentary question.4

Hannah Deacon, Dingley’s mother and an ambassador for End Our Pain, told The BMJ, “The law change is a catastrophic failure. Families were over the moon with hope that their children would have access to medical cannabis.”

Doctors want to prescribe but are afraid, she said. “One family’s doctor told them he’d be sacked if he wrote a prescription.”

The campaigning group the United Patients Alliance estimates that a million UK patients take illicit cannabis to help with their conditions. But street cannabis is an unknown quantity in terms of content, strength, and contaminants, including pathogens.

Jon Liebling, the alliance’s political director, told The BMJ that he knew of “only two doctors willing and able to write prescriptions.” He said, “Specialists should understand that any decision not to prescribe is a decision to leave the patient in the hands of the criminal market.”

Doctors reticent

Greg de Hoedt has Crohn’s disease and coordinates a UK network of some 70 “cannabis social clubs,” each with, he estimates, a couple of hundred patients on average. He told The BMJ that he knew of no members who had succeeded in getting an NHS doctor to prescribe cannabis based medical products. “I don’t know where to turn, as someone who can’t afford private consultations, procedures, and prescriptions,” he said. “My [NHS] consultant doesn’t want the rigmarole. Patients are being treated as if we’re stupid.”

At a meeting on the matter organised by the independent DrugScience organisation at the Academy of Medical Sciences in London on 31 January, David Nutt, professor of neuropsychopharmacology at Imperial College London and founder of the organisation, asked, “Three hundred people die from epilepsy each year: could [the drugs] help them?”

At the meeting Deacon described doctors’ reluctance to help before the law change even though they saw benefits for her son. She related how one had told her, “If you talk to me about cannabis again I’ll report you to social services.”

Once her son’s special licence was granted it took eight doctors’ participation to complete the bureaucratic requirements. “It was like you’re trying to import plutonium,” she said.

Doctors had asked Deacon to switch her son from preparations containing the THC that controlled his seizures fully to pure CBD products. “I refused. You don’t go from 400 seizures a month to none and then change the drug. That’s unethical,” she said.