Scottish teenager begs Nicola Sturgeon to back disabled sibling’s cannabis treatment
A 13-year-old schoolboy will hand-deliver a letter to Bute House today, begging the First Minister to help fund his little brother’s life-saving treatment.
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Dean Gray's younger sibling Murray, has Doose Syndrome, a profound and complex form of epilepsy that used to cause hundreds of seizures each day.
But thanks to a private prescription for Bedrolite, a cannabis oil from the Netherlands, the eight-year-old has been seizure-free for more than two years.
This medication costs £1300 each month and the Edinburgh-based family is forced to fork out hundreds of pounds for the treatment.
Determined to help his family, who are struggling to afford the pricey oil, Dean penned a heartfelt letter to the First Minister pleading for her assistance.
In the letter he said it was not fair that his parents have to spend all the family has on medicine that the government has agreed is safe and legal for use in the UK.
He went on to say that cannabis oil has transformed his younger brother’s life.
He wrote: “My little brother used to have really bad seizures. He has not had a seizure now in two years because my mum got him cannabis oils. This means I get to spend more time with my mum and brother, which I love to do.”
The teenager finished his letter by asking Ms Sturgeon: “Please can you do something to help us.”
“The letter brought a tear to my eye”
Dean and Murray’s mum Karen Gray, 47, said the letter her eldest son penned “brought a year to my eye”.
She added: “He wrote the letter all by himself. I think he sees how much I struggle everyday, constantly trying to campaign and he wanted to help.”
The mother-of-two said she has contacted NHS Scotland, The UK Government and the Scottish Government for support but “nobody wants to take ownership of paying”.
Covid-19 has paused the family's regular fundraising activities and forced them to rely on handouts of family and friends.
Ms Gray said they “can't rely on this forever” and need to find a permanent solution to the monthly cost immediately.
She said: “A private pediatric neurologist writes the prescription and we have an importer in Scotland that sorts out the home office licence and delivers it to us. But we have to pay for it.
“The worrying thing is, when our family can’t help us anymore we are out of money. We will have to take him off this medicine and there is no doubt that these seizures will return.”
The frustrated mum said it is “really disappointing” that despite two-years evidence showing that the oil helped cure her son’s “life-risking” seizures she is still unable to secure financial backing from the government.
She said: “It’s really disappointing because we know the oil works and is being prescribed to three other children in the UK. We should get help too.”
Cannabis oil has transformed Murray’s life
The medication has had an "immensely positive" impact on Murray’s quality of life. Ms Gray said it’s hard to remember what his reality used to be like.
Before receiving cannabis oil in 2019 her son had entered “Status” a condition where seizures won’t end and may lead to permanent brain damage or death.
The family said if cannabis oil has not worked Murray would likely have passed away from these seizures.
Ms Gray said: “He was having hundreds of seizures a day and was in a wheelchair before we gave him the cannabis oil.
“He was not at school and didn’t have any quality of life. He had to spend three months in hospital at the beginning of 2019 lying in a bed with a tube up his nose getting tube fed. He couldn't move or speak. He was basically in a vegitative state.
“And now he’s not had a seizure in two years and he’s in school full time, he doesn't need a wheelchair or a protective helmet. He can run about and play like a normal wee boy now.”
The Gray family want Murray to receive NHS funding for his medication
Alfie Dingley was granted an exception by the Home Office in 2018 to give NHS funding for the whole plant cannabis oil he takes, the Gray family want Murray to be granted the same provision.
British law was changed in November 2018 to allow prescription of medical cannabis, but only containing cannabidiol (CBD), not tetrahydrocannabinol (THC), which is the active ingredient Murray requires.
The British Paediatric Neurology Association says that THC may negatively affect brain development, structure and mental health.
But Ms Gray argues that there are multiple cases where THC has had a positive impact, including her own son.
Local MSP and Scottish Liberal Democrat health spokesperson Alex Cole-Hamilton has been supporting the Gray family for more than four years.
He said: “The laws may have been relaxed around medical cannabis, but try telling that to anyone who needs an NHS prescription for a range of oils that are offering relief to countless patients overseas, but are still just out of reach here.
“We urgently need clinical trials to be undertaken in the UK on an industrial scale to offer confidence to clinicians in the use of these therapies.
“In the meantime, the Government must step in and cover the cost of private prescriptions that many people like Karen are currently having to cover themselves.”
A Scottish Government spokesperson said they have “enormous sympathy” for Murray and Dean and will respond to the letter privately.
Adding: “However, the decision on whether to prescribe any medicine for a patient, and which medicine to prescribe, is entirely one for clinicians to make – it would be inappropriate for Scottish Ministers to make or influence prescribing decisions. Any NHS prescription that is made in line with the regulations on the use of medicinal cannabis prescribing, as set by the UK Government, will be fulfilled by the NHS.