Charlotte Caldwell, whose high-profile media campaign after her son Billy’s medicine was seized at Heathrow airport seven years ago led to a change in the law, said a lack of NHS availability of whole-plant medicinal cannabis is leaving families at the mercy of rogue operators.
He is one of less than five people who receive the unlicensed treatment on the NHS as it contains THC, the chemical compound in cannabis that makes you high.
“It is seven years since Billy changed the law and there is no research being carried out in the UK in whole-plant medical cannabis,” Caldwell told The i Paper from her home in Castlederg, Northern Ireland.
“They are receiving around 350 different products and they are unlicensed medicines: so there is no data behind them to say they are safe.”
Who gets medical cannabis on the NHS?
Only specialist clinicians can prescribe it. The NHS has handed out more than 24,000 prescriptions for licensed cannabis-based medicines since it was legalised in November 2018.
The types of medical cannabis available on the NHS are:
Nabilone – taken as a capsule which has been developed to act in a similar way to THC (tetrahydrocannabinol). Sativex – a cannabis-based medicine that is sprayed into the mouth. Epidyolex – a highly purified liquid containing cannabidiol (CBD), a chemical substance found in cannabis that has medical benefits. Billy, now 19, is “thriving” after securing a lifelong NHS prescription of whole-plant medicinal cannabis.As such, the private market has seen a rise in patients – a medical cannabis clinic in Westminster, Mamedica, said it had seen the number of patients increase from 250 to 2,750 in 2023, the BBC reported last year.
This means treatments such as Billy’s remain unlicensed and therefore virtually impossible to get hold of on the NHS.
Last year, private cannabis prescriptions doubled – reaching nearly 180,000 – according to the Care Quality Commission (CQC).
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Caldwell says this has provided a loophole for private clinics to sell cannabis, often in the form that is illegally sold on the street as a recreational drug.
“Patients are receiving medicine with mould from private providers, with no certificate of analysis that you would get from any NHS prescription, which states what is in the medicine and what potential side-effects you may get. So nobody knows what’s in some of these products. There is a poor standard of healthcare and follow-up support for many patients.
Patients paying up to £2,000 a month
Such is the demand for medicinal cannabis that companies have even set up cannabis factories in the UK, each capable of growing millions of pounds worth of the plant every year. Estimates suggest the medical cannabis industry in the UK is now worth about £400m.
“Patients deserve a medical cannabis system that puts safety andf science and compassion first, before commercial gain. We risk undoing years of advocacy and progress.”
NHS England and the National Institute of Health and Care Research has agreed over £8.5m in funding for two world first clinical trials relating to the use of cannabis-based products for medicinal use for the treatment of drug-resistant epilepsies and neuropathic pain due to chemotherapy.
‘I was hounded until I refilled expensive prescriptions’
Ex-prison officer Callum Jones, 27, from Manchester has ADHD, PTSD, anxiety and depression. At one point, he was prescribed 12 different types of antidepressants as well as the highest legal dose of Concerta XL – a form of methamphetamine.
Callum Jones said some private clinics ‘treat people as pay cheques, not patients’.“That changed in 2018 when I was able to access cannabis medically. For the first time I felt like I had some control over my life, but finding that care wasn’t easy.”
“This nearly broke me mentally – they would not stop calling me asking me to refill my prescriptions and schedule appointments with their clinicians. That’s unfortunately how some clinics treat vulnerable patients in this country – as pay cheques, not people.”
“The cost of most medications remains unaffordable for many. Patients who finally find a treatment that works still have to fight on a regular basis to access it.”
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