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Doctor's orders: Why patients are still fighting to receive a medical cannabis prescription

Medical cannabis (Credit: Inna Dodor / Alamy Stock Photo)

7 min read

Medical cannabis was legalised in 2018, but patients are still fighting to be prescribed. Sophie Church looks at whether a Labour government would make access simpler

When Hannah Deacon’s son Alfie Dingley was born, he appeared healthy. But at eight months old, he began to have cluster seizures, and was taken to hospital while doctors tried to find a suitable treatment. Steroids were found to stop Alfie’s seizures, but only for three or four days at a time. By the age of five, he was in hospital every week.

Alfie was later diagnosed with PCDH19-epilepsy. Usually found in girls, Alfie is now one of nine boys in the world with this condition.

“I was hoping for the miracle phone call from the doctor to say, ‘Oh, we found what’s wrong with him and this is what we do’,” Deacon tells The House today. “And actually it was completely the opposite. The doctor said, ‘Well, we found what’s wrong with him. There’s no treatment. There’s no research because it’s so rare. There’s nothing we can do to help you.’”

He is committed to introducing it should Labour win the election

It was at this point Deacon started investigating medical cannabis, which had been proved to reduce seizures for children living outside of the United Kingdom. The family moved to Holland where it was legal, and after six weeks on medical cannabis Alfie went 17 days with no seizures. “It just got better and better from there,” says Deacon.

However, after returning to the UK, Deacon’s hospital refused to issue Alfie a licence for the drug. After months of campaigning, then-health secretary Sajid Javid intervened to grant Deacon a special licence to access medical cannabis for her son. 

In 2018, medical cannabis was legalised in the UK. But since the law change just three children have been prescribed medical cannabis on the NHS. Instead parents are raising thousands of pounds a month to afford private treatment. Now MPs from all parties, who have seen how medical cannabis has benefitted their constituents, are demanding answers.

Jeremy Wright, the Conservative MP for Kenilworth and Southam – Alfie and his mother’s constituency – was instrumental in bringing the Home Office and the Department of Health together to grant Alfie’s licence. For him, legalising medical cannabis showed bravery from the government. But the medical profession has since failed to pick up the baton. 

“I don’t blame the government for this, as much as I think it’s a shame that NHS professionals and professional bodies have somewhat dragged their feet,” Wright says. He argues that the medical guidance should have caught up with the change in the law “more quickly” – and this “still perhaps hasn’t happened properly”.

“Medical processes haven’t changed in order to make doctors feel more comfortable about prescribing this kind of medication,” the MP adds. “You can understand doctors are reluctant to prescribe experimental medication anyway. They’re even more reluctant when it’s got the word ‘cannabis’ in the title.”

The NHS consistently prescribes morphine, which sits in the same family as heroin, he points out. “They’re different things, and we should be able to get our heads around the concept that medical cannabis and recreational cannabis are different.”

Cannabis is an incredibly complex plant, with more than 400 phytocannabanoids working to different effects. While clinical trials would reassure medical professionals that the drug is safe to prescribe, the ongoing battle to decide which trials would be appropriate is stalling prescriptions.

“We’ve always wanted trials that are not blind,” says Tonia Antoniazzi, Labour MP for Gower and chair of the Medical Cannabis under Prescription All-Party Parliamentary Group. “You can’t take the children off the drug then to find that they had a placebo, because that would be too dangerous.”

Wright explains: “What would be unconscionable is to say to a young boy like Alfie: ‘Well, look at the result of this drug, it’s been great, but just to make sure that it’s working as intended we’re going to take you off it for a bit, let other people continue to take it and see if there’s a difference.’ That, I think, is hugely problematic.”

While exasperated MPs think observational trials would be satisfactory – where they can point to someone like Alfie to prove medical cannabis works – the healthcare industry has stressed that only randomised controlled trials will do. 

Experts explain that randomised controlled trials are essential for the National Institute for Care Excellence (NICE) to prove the cost-effectiveness of medical cannabis to the NHS. The NHS is still scarred from its role in the thalidomide scandal, adds Ronnie Cowan, Scottish National Party MP for Inverclyde and vice-chair of the APPG: “That is still there in the medical professional’s mind all the way through: you have to test and test and test and test.” 

However, there have been no new randomised controlled trials in the UK since NICE reviewed medical cannabis guidelines in 2020. 

“I do think there’s a problem with the desperation to pursue a randomised control trial rather than any other kind,” says Wright. “There may be doctors out there thinking: I would very much like to prescribe this,” Wright says, “but then [they] look at the guidelines from [their] professional association, and it says, ‘oh, not sure about that’. And that puts them off.”

“The other person I think deserves huge credit in Alfie’s case is his GP, who was prepared to stick their neck out and say, ‘I know people tell me I’m not supposed to do this, but I’m persuaded this is the right thing to do’,” he adds. 

Investment from pharmaceutical companies would make medical cannabis more readily available for those desperately seeking it. While medical governing bodies prevaricate, however, it constitutes a risky investment for commerce. 

“There’s challenges around the fact that as medical cannabis is a plant it’s more difficult for them to receive a return on their investment if they were to invest in those trials,” says Simon Erridge, research director at private medical cannabis clinic Curaleaf. “If there was one particular formulation, which seems to be promising, certainly there would be more incentive for them to be involved.”

Others say our red tape-wrapped NHS is preventing medical cannabis from reaching patients, with GPs struggling to source highly personalised medical cannabis treatments.

“They have to put in an Individual Funding Request (IFR) to get the funding, because that’s the only way they can do it. And IFRs are like hen’s teeth,” Antoniazzi says.

However, with the law changing in 2018, some say the government has not tried hard enough to push medical bodies into making it easier for doctors to prescribe medical cannabis.

“The government has entrenched this idea that – and this is the point from the medical professionals – we say to the medical professionals and their testing bodies and the people who licensed products: it’s up to you. We’re politicians. What do we know?” says Cowan.

For Antoniazzi, the government has prevaricated over the issue. “Why are we still waiting for trials? First they blame Brexit, then they blamed Covid – what are we waiting for now? I know what we’re waiting for now. We’re now waiting for another election,” she says. 

“Government have too much on their plates at this one time, as we rush towards election year. The delivery of this is not one of their priorities,” adds Jim Shannon, Democratic Unionist Party MP for Strangford.

While that may be true, there are signs Labour is attuned to this issue. “I spoke to Wes Streeting before Health questions referencing medical cannabis, and he is committed to introducing it should Labour win the election,” says Shannon. “I get the impression what Wes tells me is absolutely right. He’s keen to bring it forward as legislation next time around.”

However, a source close to Streeting fervently denied that Labour was making such a commitment. 

Still, Antoniazzi suggests “one way round this” would be to establish a body to conduct more research into the cannabis plant, similar to the Netherlands’ Office of Medical Cannabis. 

“I’ve had conversations with Wes on [medical cannabis], and he has met people to have those conversations,” says Antoniazzi.

“It’s a case of when we get there, then I’m really looking forward to working with our front bench and being able to see what they can do. We can’t ignore the benefits of medical cannabis. I believe that we have the right people in the right place, and I will keep pushing at the door to make sure that we do it.” 

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