A mum battling to have life-saving cannabis oil provided and funded by the NHS is calling on the new health minister to act.
Lisa Quarrell, from East Kilbride, has tirelessly campaigned to secure a NHS prescription for Bedrolite for son Cole who suffers from a rare form of epilepsy.
Eight-year-old Cole was diagnosed with a form of drug resistant focal epilepsy when he was just three-months-old.
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Now his mother has written to Humza Yousaf asking him to reconsider the government’s stance on providing the life-saving drug.
Lisa told Lanarkshire Live : “I’m hoping that a change in minister can only be positive.
“Previously it was always ‘we won’t do it’ or ‘we can’t do it’ – never ‘let me see what I can do for you’.
“There was no relationship there.”
Lisa previously highlighted an NHS endowment fund which she believes could pay for Cole’s vital medication.
But former health minister Jeane Freeman told Lisa that – because she “went private” – it would be deemed “improper use” of NHS funds to pay for Cole’s prescription.
At the age of two, Cole underwent brain surgery and has been on over 20 different medications since he was diagnosed to try to help control his symptoms. All proved to be unsuccessful.
Multiple daily seizures left Cole unable to walk, talk and saw him admitted to hospital unresponsive.
But the whole-plant cannabis oil, Bedrolite, has proven a lifeline, working well with other medications and all but stopping his seizures.
Former-cop Lisa, who recently appeared on a Montel Williams podcast, previously secured a private prescription for Bedrolite after admitting to smuggling it from the Netherlands.
But she now has to find over £1000 a month to afford the drug and simply keep her son alive.
Now she has written to Humza Yousaf calling on the Scottish Government to change their stance.
She added: “At the end of the day the fight I have been fighting for my son is no further forward and I am having to pay more £1000 every month to keep my son alive.
“I wrote to Mr Yousaf to ask him to meet with me to discuss what he can do to help myself and my son – but I don’t see how he couldn’t be aware of Cole’s battle.”
Cannabis for medical purposes was approved in November 2018 – but only a handful of prescriptions for provision on the NHS exist in the UK – with none in Scotland, Lisa believes.
And she insists it is within the powers of the Scottish Government to change guidelines here.
Cole recently suffered breakthrough seizures after previously reaching 18-months with none.
The dose of Cole’s other epilepsy medication – Phenytoin – was increased and saw him, for the first time since March 2019, have two seizures a day.
It was then Lisa decided to slightly increase is Bedrolite.
She added: “Since increasing his Bedrolite Coles seizures have completely stopped again.
“I believe again this is even more evidence that his Bedrolite is what is keeping Cole seizure free and have written to his medical team, once again, that he is prescribed Bedrolite through a NHS prescription.”
Lisa also has a battle against time to secure change.
She had feared that Brexit would halt the supply of Cole’s Bedrolite to the UK.
But the UK and Dutch governments agreed to extend the period of grace for Bedrolite prescriptions for six months – taking her to next month.
However, the current waiver has since been extended but only till January 2022.
A Scottish Government spokesman said: “We have received Ms Quarrell’s letter and the Cabinet Secretary will be replying privately to the family.
“We have enormous sympathy for Cole and his family.
“It is important to note that the regulation, licensing and supply of medicines remain reserved to the UK Government.”
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