We’ve read stories of patients in the UK who continue to struggle with access to cannabis as medicine, and now Scotland is garnering headlines for the same kind of conflict for patients. At 39, Lisa Quarrell is embroiled in a fight for medicine for her son Cole Thomson who, at age 8, suffers from uncontrollable drug resistant focal epilepsy. Cole’s private prescription for cannabis oil, which currently must be imported to the UK by a single provider in the Netherlands. Not only does the required import mean having to navigate legalities, but the oil costs the family over ￡1,000/month.
As a result of the stress of trying to legally secure her son’s life-saving medicine, Lisa started a petition to further pressure the Scottish government into putting together a fund so that parents aren’t out thousands of pounds out of pocket to save their children’s lives. Thus far, Cole’s own medical costs have been helped with fundraising and the generosity of strangers to be able to afford the medicine. Like every cause in the world right now, the pandemic has made these efforts extremely difficult.
“Cole had brain surgery when he was two and has tried 20 medications since he was three months old. He was given a prescription for Epidiolex, the UK only licensed CBD product but his health continued to decline. I now have a private prescription for Cole for a Bedrolite oil which is whole plant oil and he is the best he’s ever been. Cole almost died in March and thanks to this oil he’s thriving.
“I took Cole to meet Jeane Freeman in July 2019 and asked her to watch a video on my phone. I said this is what I have to look at 20 times a night cause my baby was dying without access to these oils. I need you to help me get it through a funded prescription. But she refused to watch the video.”
Lisa cited examples of patients in England and Northern Ireland who have fully funded prescriptions on the NHS and has asked why it is appropriate for her son to miss out when solutions have been found elsewhere in the UK. Unfortunately, the response from the Scottish lawmakers was as follows, “These are undoubtedly extremely difficult cases, which are distressing for patients and their families. However, it would be inappropriate for ministers to intervene in decisions on the treatment or funding for individual patients, for which we must trust clinicians and the NHS.
“It is solely a decision for the patient, or the patient’s carer, whether or not to seek private treatment. Where they do so, they are responsible for paying any costs incurred. Our health system, the NHS, is a publicly funded service and it would not be appropriate to redirect that public funding from the health service in Scotland to private care.”
That’s just ridiculous. I was told Cole could die, so going private wasn’t a choice, but a necessity.”
As reported in the News, Lisa has been tirelessly campaigning for an NHS-funded prescription, to no avail.
The seven-year-old has been taking unlicensed Bedrolite oil for the past year having gained access to it through an East Kilbride-based importer.
Since taking Bedrolite, Cole has suffered just one small seizure in 12 months – but without it, he’s likely to begin having multiple daily seizures again and be admitted back into hospital – and Lisa warns “he could die”.
Now, as Scotland sees its first legal cannabis farm being set up for medicinal use, and emergency legislation set to be brought in amid the outbreak to deliver the miracle oil to NHS patients through the post, Lisa insists Cole has been forgotten by the only people with the power to save him.
She asked: “Why should he be forgotten by our government and NHS because they have still not bothered to research the medicine keeping my son alive?” but has not made further progress on her family’s mission.
Cole and Lisa’s story is yet one more reason for celebration of our own medical cannabis legality, but heartbreaking for those families around the globe who aren’t able to enjoy the same freedoms.
Image courtesy of the Scotsman.
