Parents of epilepsy and multiple sclerosis sufferers continue to pile pressure on the British government to open up a proper medical cannabis industry.

The Home Office legalized medical marijuana in October 2018 and doctors were permitted to begin prescribing it the following month. However, overly stringent NHS guidelines laid down by the Royal College of Physicians and The British Paediatric Neurology Association have prevented all but a couple of patients from actually receiving it.

Last week the National Institute for Health and Care Excellence (NICE) sparked fury among campaigners by ruling that cannabis should not be used to treat MS and chronic pain. It cited a lack of evidence and high costs for its guidance.

Every week local and national media outlets are running stories about parents that are spending small fortunes to secure the cannabis their children need. This week the BBC focused on an epileptic teenager whose family must pay £4,000 per month to secure marijuana for him.

Bailey Williams suffers from Lennox-Gastaut Syndrome, which can lead to several seizures per day, but cannabis has reduced his symptoms and allowed him to actually speak and play with toys. He has been prescribed a high-CBD, low-THC cannabis oil called Bedrolite from a private clinic in London, but his parents have to pay through the nose to import it from the Netherlands.

“Because the UK have got to import it, you’ve got your importation fees, you’ve then got your pharmacy costs on top, so that same £150 bottle becomes £500, which Bailey needs every two-and-a-half to three days,” said his father, Craig Williams.

Earlier this month, ITV News featured a family that remortgaged their house to be able to pay £2,500 a month to buy cannabis for their daughter. They say it allows her to walk and talk and her intelligence has shot up, but without an NHS prescription the cost is sky high.

Cases like these forced the UK government’s hand in the first place, and the ongoing pressure could eventually force the NHS into a climb-down. A number of British politicians are campaigning for the country’s cannabis laws to be liberalized, and Tommy Corbyn – son of opposition leader Jeremy Corbyn – has even opened a cannabis products shop called the National Hemp Service in a mocking reference to the NHS.