Cannabis climbdown misled NHS patients – campaigners

by | Sep 12, 2023 | Health

By Alastair Fee & Ben MooreBBC NewsA high-profile government climbdown which legalised a type of cannabis medicine on the NHS five years ago misled patients, campaigners say.It was thought the law change would mean the unlicensed drug, which treats a range of conditions, could be freely prescribed by specialist doctors.But fewer than five NHS patients have been given the medicine, leaving others to either pay privately or miss out.The government says safety needs to be proven before a wider rollout. Legalisation of whole-cannabis medicine was hailed as a breakthrough for patients – giving either NHS or private specialist doctors the option to prescribe it if they believed their patients would benefit.Medical whole cannabis uses the entire cannabis plant – which includes the compound THC, the part which can make people feel high.But patients are being turned away, say campaigners, because doctors often do not know about the medicine, which is not on NHS trusts’ approved lists. Some specialists who do know about it say there is insufficient evidence of the drug’s safety and benefits to support prescribing. The drug would need to undergo medical trials before it could be officially licensed – but these are costly and complicated because of the many chemical compounds within the cannabis plant. Campaigners say trials of medicines containing whole plant cannabis, particularly with the aim of helping children, would be unethical as some patients would have to come off essential medication to take a placebo.Cannabis: Prescription Pot Luck?Five years after medical cannabis was legalised, why is it so hard to get a prescription?Watch now on BBC iPlayer (UK Only) The BBC has been told that when specialist doctors do want to prescribe the unlicensed products, there is no simple way to get funding.They have to ask NHS England to make an exception to pay for individual cases, but they are almost always turned down. It is known that fewer than five have been approved.Licensed cannabis drugs do exist for specific conditions – but they do not use the whole plant. For example one called Epidiolex contains another cannabis compound – CBD. It can be prescribed for epilepsy but does not benefit patients across the spectrum of epilepsy disorders. ‘I felt like I changed history’The first patient to receive an NHS prescription for medical cannabis was 11-year-old Alfie Dingley, who has severe epilepsy. His mother, Hannah Deacon, from Kenilworth in Warwickshire, successfully spearheaded the high-profile campaign which led to the 2018 legislation change.Before then, Alfie travelled to the Netherlands where whole-plant cannabis oil is legal under prescription for medical purposes. Following Hannah’s campaign, Alfie’s GP was granted a licence to prescribe it under direction by a specialist doctor, in a process called a shared care agreement.Alfie’s mother believes the treatment has been life-changing – he has not had a seizure for three years. He gets 13 bottles of Bedrolite on an NHS prescription each month. The cost would otherwise be £225 per bottle.Hannah says back in 2018, she felt like she had changed history, opening up the treatment to people with a wide range of debilitating conditions including chronic pain, insomnia and neurological conditions like Tourettes.But now, she feels she only got the drug on the NHS because she made a huge fuss in the media.”I think they changed the law to take the wind out of my sails because the campaign was very effective,” she says. ‘Parents clamouring’Senior paediatric consultant Dr David McCormick, from King’s College Hospital in London, says it was “disingenuous” of the government to suggest in 2018 that NHS prescribing was ready to take place. Ministers “shifted the heat” to practitioners like him, he says.”Parents were clamouring at our door, or phoning all the time, as they believed we were able to prescribe and that was not the case.”The message went out, ‘doctors can now prescribe cannabis products’ and that put us in a difficult position, because in truth we need to apply for that to be approved by NHS England.” £1,600 for a six-week supplyPre-2018, the only way patients could get hold of cannabis products and use them medicinally was to buy them illegally in the UK, or to travel abroad to get them. Now, if the NHS will not pay, they can legally pay for private prescriptions from specialist clinics.There are now 31 private prescribing centres across the UK. These clinics issued more than 140,000 prescriptions between November 2018 and 2022. It is estimated that the medical cannabis market will be worth £1bn in 2024. One private patient is 13-year-old Jasper Salisbury-Jones, from Brixton in south London, who – like Alfie Dingley – has a rare form of epilepsy. “By the time he was 11, he was having about 800 seizures a day, which sounds ridiculous but that was where we got to,” says Jasper’s mum, Alice Jones. “The doctors did say we were out of options, so the expectation was that eventually a seizure would kill him.”Jasper had tried nine different other medicines, had brain surgery, and an electrical implant was put in his chest – but nothing would stop h …

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