Children step up to raise funds for Medical Cannabis Prescriptions
Two children, who have seen ‘life-transforming’ results from medical cannabis, will walk four miles to help raise money for private prescriptions.
Murray Gray, age 10, and Ben Griffiths age 13, who both have severe, treatment-resistant epilepsy, will walk the distance of Morecambe Bay, in Lancashire this October, to raise funds for medical cannabis charity Intractable Epilepsy.
Both Ben and Murray have seen life-changing results since being prescribed cannabis privately.
But many families are struggling to fund the costs of the medication, which in some cases can cost more than £1,000 a month.
The boys’ mothers, Karen Gray and Joanne Griffiths, have been prominent campaigners for NHS access, since medical cannabis was legalised almost four years ago in November 2018.
Since then only three prescriptions have been issued through the health service, while around 90 children are accessing cannabis privately in the UK.
Intractable Epilepsy was launched by Joanne and Karen, alongside other loved ones of those living with the condition, to help fund private prescriptions until cannabis becomes more widely available on the NHS.
It received charity status from the Charity Commission earlier this year, and is the first stand-alone, independent charity which will see all funds raised go towards supporting qualifying families with the costs of medical cannabis prescribed by a specialist doctor.
On 29 October, Ben and Murray will walk the length of Morecambe Bay promenade, roughly four miles. This is something neither of them would be able to do were it not for medical cannabis.
Ben has lived with severe epilepsy, cerebral palsy and autism for most of his life. At his worst, he was experiencing up to 300 seizures a day, with some lasting up to 25 minutes.
Joanne and husband Paul tried every treatment option available, from conventional anti-epileptic drugs and the ketogenic diet, to exploring brain surgery.
In December 2018 Ben had an ECG which showed he was having 200 seizures in 18 hours – around 11 seizures an hour. Twelve months later – after just months on medical cannabis – it showed no outward electro seizures at all in 40 minutes.
Since taking medical cannabis Ben has reduced all of his other medication and hasn’t needed any hospital scans or trips to A&E.
Thanks to a prescription for Bedrolite oil, Ben is happy and inquisitive, he can walk unaided, attends a special school and plays with his twin brother and older sisters at home.
A cost analysis submitted to the local Clinical Commissioning Group by Joanne two years ago, found that if Ben was to come off medical cannabis, to keep him in hospital it would cost the NHS around £98,000 a year.
Ben in 2017 and how his life looks today.
Murray, who has a rare form of epilepsy known as Doose Syndrome, also suffered hundreds of seizures a day before he started taking whole-plant cannabis oil. He was taking dozens of anti-epileptic drugs which left him needing the use of a wheelchair and barely able to communicate.
Murray has now been seizure free for around three years and looks unrecognisable to photos taken of him in 2018. He attends school, engages with those around him and no longer needs the use of a wheelchair.
But when his case was referred to the Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) it was recommended that he be weaned off the oils and put back on Epidyolex, something his mum Karen refused to do.
Last year, Murray’s brother Dean Gray wrote a letter to Scottish First Minister, Nicola Sturgeon asking for her to fund his and other children’s prescriptions. Her response was that more evidence was needed.
Murray in 2018 and how his life looks today
How you can help
Ben and Murray have already raised over £1,000 of an ambitious £10,000 target.
Vice chair of Intractable, Joanne Griffiths, said supporting families was more vital than ever with the cost of living crisis which is currently facing the UK.
“The cost of living hit families like ours four years ago when we had to find an extra £2,000 per month to pay for private prescribed medication, keeping our son 95 per cent seizure free and out of hospital,” she commented.
“With the current rising UK cost of living, we aim to help other families with their medical costs to keep children and young adults with Intractable Epilepsy safe and well.”
Karen Gray, the charity’s secretary, added: “Both Murray and Ben would not be able to do this without their cannabis oil medication. We are walking to raise funds so that we can help all the families that are paying for this very expensive, yet life-saving medication.”