A Scottish MP has called for urgent action as it is revealed that only a very few patients have been able to get access to life-saving medical cannabis medicines, such as Bedrocan, on prescription.
Greenock MP Ronnie Cowan claims that, while the moral case for drugs like Bedrocan being made available in the UK on prescription has been accepted in principle by ministers, the red tape means some families of children with severe epilepsy have to pay private suppliers £1300 a month.
In an answer to a question in the House of Commons, UK Health minister Jo Churchill said: “Establishing clinical trials is vital with the support of the National Institute for Health Research to make sure we are making the right decisions on routine funding.
“From April 1, we’ve introduced the National Patient Registry to record data and monitor patient outcomes in England with a view to it being rolled out across Scotland and other devolved administrations later this year, covering licensed and unlicensed cannabis-based medicines on the NHS, with a view to include the private patients in due course.
“As [Mr Cowan] knows, I am focused on making sure we get the right solutions for families. But at the heart of this matter always has to lie the safety of what we prescribe.”
In response, Mr Cowan commented: “I understand the development of medicines is a complicated and time-consuming endeavour and that best practice must be followed at all times but Matt Hancock promised a solution within months back in 2019.
“We developed a Covid vaccine, fully tested, manufactured and provided free on the NHS in under a year.
“The development and research into medical cannabis should be given the same priority.”
Scottish families and severely ill children do need the help very soon. The most prominent Scottish case is that of 9-year-old Murray Gray.
Murray was only two years old when he had his first Tonic-Clonic seizure. Murray’s seizures became increasingly frequent, going from 12 in December 2017, to 12 seizures a day in January 2018.
He was later diagnosed with Myoclonic atonic epilepsy (MAE), more commonly known as Doose Syndrome – a rare form of epilepsy syndrome that accounts for only one to two out of 100 of all childhood-onset epilepsies. Murray was given several medicines and steroids, but none of them were able to help him.
In May 2018, Murray’s condition had escalated further still and he suffered 600 seizures in one day. While Ms Gray was campaigning for medicinal cannabis for his son, Murray eventually got a prescription in the UK for Epidiolex.
As a result, Murray has now been seizure-free since 7 June 2019.