A campaigning Scots mum who has spent over £100,000 on ‘miracle’ cannabis oil to keep her epileptic son seizure-free has revealed the schoolboy was left without medication which she believes has caused his seizures to return.
Lisa Quarrell claims that due to a change in private clinic Curaleaf’s automatic prescription system, 12-year-old Cole Thomson is no longer getting his regular three month prescription from Lanarkshire-based pharmaceutical manufacturer Target Healthcare.
This means the “exhausted” mum-of-two is left having to chase the pharmacy every month causing delays to his medication.
She says an issue in the lab resulted in Cole being left without medication for a full day last month causing his crippling seizures to return.
“This would never have happened if Cole had been prescribed cannabis oil on the NHS”, said Lisa.
“Curaleaf are now not doing an automatic prescription and I’m having to chase it up every month. Target are leaving it to me to chase up instead of taking it over so I’m calling them asking when I can collect Cole’s prescription and they’re saying they still don’t have it.
“It resulted in Cole being left without meds for a full day which I’m now paying the price for because his seizures are back. He’s also got really bad anxiety and depression and he’s exhausted in the mornings so we’re trying to wean him off certain drugs, and we don’t know what is doing what because he’s without his cannabis.
“I contacted Target management and their pharmacy and got no reply. I’ve been dealing with these people for six years and helped them get the contract for Bedrolite in the UK. It was because of Cole that they started importing cannabis and none of them bothered getting back to me, they just ignore me.”
Lisa has been campaigning tirelessly for six years to have her youngest son’s lifesaving medical cannabis prescribed on the NHS.
Cole’s Campaign was set up to help fund the East Kilbride boy’s medicine which has transformed the youngster’s life since taking the drug six years ago.
Due to his rare and drug resistant focal epilepsy, Cole lost a huge chunk of his childhood suffering up to 20 seizures a day for six years.
But since taking a daily dose of the cannabis oil Bedrolite he is seizure-free and has gone from being confined to a wheelchair with limited speech to launching his own YouTube channel and excelling in taekwondo.
However Cole’s family are finding it an impossible task to raise the £2000 per month needed to keep their son alive.
Despite the “clear evidence” in Cole’s case a six-year battle for government funding has resulted in nothing.
The Scottish Government continually say that while they have “enormous sympathy” for Cole Thomson and his family, the regulation, licensing and supply of Cannabis Based Products for Medicinal Use (CBPMs) remain reserved to the UK Government and it has “no power” to alter this.
Lisa added: “I go to bed every night with my son not knowing if his next seizure’s going to be his last and now I’m being told because a bit of paper hasn’t arrived on time there’s nothing they can do to give me this medicine. Somewhere the system has broken down.”
The family has also been hit with added financial stress as Lisa is being forced to pay double for a prescription of Bedica – the THC-only medicine that Cole gets.
Due to an unknown issue with the drug the expiry date on Cole’s medicine has been reduced by weeks meaning he is running out of the drug quicker.
Lisa explained: “I’ve been paying £50 every 28 days for Cole’s prescription of Bedica. That should last Cole 50 days but now they’re giving me an expiry date of either one or two weeks, sometimes three weeks.
“So I’m only getting 21 days out a prescription that I’m having to pay full price for because their expiry dates are so short which results in me having to pay double. I have no idea why this is, they won’t tell me.
“I’ve spoken to other parents who get cannabis oil on the NHS and they’re getting it direct so they’re missing out all this drama. And now I’m having to justify fundraising money to explain why it’s costing me more money than it should.
Lisa raised a formal complaint against Curaleaf and Target with Chief Pharmaceutical Officer Alison Strath.
She claimed Curaleaf replied saying they’d sort the prescription issue so it never happens again and it will be automatically generated. Target have yet to respond.
The frustrated mum says it’s “exhausting” being mum, consultant, carer, campaigner and fundraiser with no real support from those in power.
“I sent an email to all the politicians involved and said to them I’m expected to pay full price for a medicine that’s not going to last me half the time that it should”, she continued.
“If I’m already fundraising why should I have to pay that money, that’s their fault not mine. But nobody bothers getting back to me so I just have to pay it because Cole can’t go without the medicine so they’ve got me over a barrel. It’s just left to parents to do all the chasing.
“I’ve spoken to the Chief Pharmaceutical Officer and MSPs about the fact that Cole’s care is split in two and I’m in the middle. There’s no continuity of care and a breakdown in communications because the NHS will only do their part, but they won’t even discuss cannabis or what’s happening with that, they don’t even want to know.”
She added: “Westminster let us down with the Tories in power and now Labour are not doing anything and the SNP are letting me down up here. We’re no further forward than when I started all this.
“There was an NHS prescription issued to a child in England recently for palliative care. My heart breaks for the family because they’ve been fighting the same length of time as me and they should have had it years ago.
“Is that what needs to happen before they’ll help Cole? Why not help kids when they’re doing well not wait until they’re really sick.
“I’ve only got just over £1000 left in Cole’s bank and his medicine is over £2000 a month now.”
The family are relaunching their annual fundraising campaign with Equis Ice Cream on Friday, February 14 with Equi’s Ice Cream with raffle money from a Burns Supper event on the 18th being added to the pot for Cole’s Campaign.
Lisa said: “St Valentine is the patron saint of Epilepsy so that’s why we decided to launch Cole’s Campaign with Equi’s Ice Cream on February 14 this year. We are hoping businesses and our amazing community will continue to share love and support for Cole.”
Curaleaf Clinic said that while they “cannot comment on individual patient cases”, they “sincerely empathise” with the stress and worry that disruptions can have on a patient and their family.
They added that expiry dates for dispensed medications are handled by the dispensing pharmacy after receipt from the manufacturer and recommended contacting them directly with any questions related to medication expiry.
A spokesperson said: “We don’t like to hear that any patient is in a position where they must miss a day, or even a dose, of medicine and we sincerely empathise with the stress and worry that disruptions can have on a patient and their family.
“It is important to clarify that in the UK, medical cannabis prescriptions are legally required to be issued on paper. These paper prescriptions must then be physically sent to the dispensing pharmacy via postal service or courier. Unfortunately, this process can introduce delays that are outside of Curaleaf’s direct control. We have not changed our processes around this, as they are dictated by current UK law.
“We strongly believe that a move towards electronic prescribing for medical cannabis would significantly benefit patients. This would eliminate the reliance on slow and antiquated paper prescriptions, reducing the risk of delays. We urge politicians to consider and support this necessary change.”
Backing medical cannabis being made more accessible to children with drug-resistant epilepsy on the NHS, they added: “We are also keen advocates for political solutions that would allow children with treatment-resistant epilepsy to access these medications on the NHS, where appropriate, alongside continued research into their efficacy. We believe that a multi-pronged approach, combining improved access with ongoing scientific investigation, is the best way to serve these vulnerable patients.”
Target Healthcare was contacted for comment.
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