Cole Thomson and his family have been handed a welcome reprieve after the UK and Dutch governments agreed to extend access to his precious Bedrolite oil.
We told you earlier this month how Brexit had hit the fast-forward button on the East Kilbride youngster’s life because the prescription to his life-saving CBD oil was stopped when the UK left the EU.
That left his mum battling against the clock to find a solution, continuing her battle to save her son’s life.
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But Lisa Quarrell and her family were given some brilliant news on Thursday when the UK and Dutch governments agreed to extend the period of grace for Bedrolite prescriptions for six months.
That means Cole’s private prescription is safe again until the end of June. However, after that, the fight starts again.
Taking to social media to share the news, Lisa wrote: “Today came the news I have been desperate for since just before Christmas.
“My original fight to access funding for this or to access it through NHS Scotland continues though. But for today, I know my boy is safe.
“We get to celebrate before continuing the financial fight tomorrow.”
Cole suffers from severe epileptic seizures and relies on Bedrolite cannabis oil to survive.
The family were dealt a hammer blow at the start of the year when he started having seizures again after an incredible 18-months without any – a stability in his condition down to Bedrolite CBD.
His seizures returned after a change in his phenytoin levels caused by a change in the brand of another medication he receives.
Cole had been on Dilantin to control his phenytoin levels for over 11 months, keeping his levels at around 8-9 on the scale; however, the family were forced to put him on a different brand, Epanutin, by doctors at the end of September.
Lisa explained the bureaucracy surrounding this decision, saying that when Epanutin is in stock, the NHS are duty bound to use it rather than Dilantin, irrespective of someone’s prescriptions.
This has seen Cole’s phenytoin levels rise to 12.1, increasing his anxiety and stress levels, causing him to act out and get emotional, and resulting in small seizures in the morning.
One way to offset these seizures is to increase his Bedrolite intake, but the Catch 22 situation is that the more they use, the quicker they will run out.
Because of Brexit, UK prescriptions would no longer able to be dispensed in EU member states since the end of the Brexit Transition period.
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That meant, until this week’s extension, that the specialist CBD oil that Cole needs could not be shipped from Holland to Scotland to keep his seizures at bay and keep him alive.
And with the eight-year-old experiencing seizures again for the first time in 18-months, that meant he had enough Bedrolite to last him until the end of January.
Lisa took time to thank Professor Alison Strath, Scotland’s chief pharmaceutical officer, for “all her help” with what she called a “nightmare situation”.