Images and story source credit: The Scotsman
Unbelievably, a Scottish mother and 17 other mothers in similar situations plan to go on a hunger strike in an effort to pressure the government into providing funding for the medicine their children need!
Murray Gray has a rare form of epilepsy called Doose syndrome that requires a treatment of Bedrolite and Bedrocan that was prescribed by a Dutch doctor in March but at a cost of £1,200 a month, his mother, Karen Gray has had to rely on fund raising efforts such as a recent sponsored walk across the Forth Road Bridge and an upcoming Race Night planned for November
“It’s difficult, I don’t like asking people for money but I’ve got no choice,” she said.
Karen Gray, from Edinburgh, uses oil from the whole cannabis plant, illegal in the UK without a license, to treat her son Murray’s rare form of epilepsy.
A Department of Health and Social Care spokesperson said: “We sympathise with those families dealing so courageously with challenging conditions.
“The law has been changed to allow specialist doctors to prescribe cannabis-based products for medicinal use where clinically appropriate. However, there is a clear consensus on the need for more evidence to support such prescribing decisions.
“Government is working with the health system, the industry, researchers, and others to improve the evidence base for these products and to provide clinicians with further support and guidance on prescribing these products where clinically appropriate.”
Ms Gray and other mothers in the same situation have lobbied the government for an NHS prescription to fund the drug as part of the “End Our Pain” campaign which currently has over 67,000 supporters (Oct 2019). You can learn more about this campaign and donate at https://endourpain.org/ and we encourage you to check out the site and if you cant afford to make a donation then you can at least be proactive in using their site to easily email your local PM to help lobby for change.
In September 2019 it is reported that 20 families wrote to the Prime Minister to demand government funding and NHS prescriptions but haven’t even received a response!
“We’re at a desperate situation, we’ve absolutely had enough. We feel like we’ve got no option and we have to do something drastic,” Ms Gray said. Now 18 mothers including Ms Gray have said they plan to go on hunger strike outside Downing Street on Nov the 1st in an attempt to put pressure on the government to step in and sort the situation out.
Ms Gray would like the same provision granted to her son as to Alfie Dingley, who was granted an exception by the Home Office in 2018 to give NHS funding for the whole plant cannabis oil he takes.
British law was changed last year to allow prescription of medical cannabis, but only containing cannabidiol (CBD), not tetrahydrocannabinol (THC), which is the active ingredient in whole plant cannabis oil.
The British Paediatric Neurology Association says that THC may negatively affect brain development, structure and mental health.
Murray received his first course of Epidiolex, a legal drug containing CBD, in August 2018. It appeared to work, but the positive effects subsided after three months and Murray was admitted to hospital in January unable to “eat, talk or walk.”
Gray said she thought her son “was going to die”, until a Dutch doctor prescribed a drug containing THC. Murray began treatment on Bedrolite in March, and Bedrocan in May.
Now Murray is a ‘changed wee boy’, at school full-time and taking part in normal play and other activities despite his Doose syndrome.
Ms Gray currently has just enough funds to pay for Murray’s treatment until the end of the year so we hope that the UK government will wake up and at the very least help families and children in this situation and similar get access to the medication they so dearly need.
Let us know your thoughts in the comments section below.
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