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Support secured for Scottish medical cannabis debate on behalf of 9-year-old Cole Thomson

An MSP has secured cross-party support for the first debate of its kind in Scotland.

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Scottish debate secured on behalf of 9-year-old seizure-free thanks to cannabis
Cole Thomson has been seizure-free since 2019

An MSP has secured cross-party support for a members debate on access to medical cannabis, on behalf of nine-year-old Cole Thomson, who relies on the life-saving treatment.

Collette Stevenson MSP for East Kilbride has secured cross-party support after submitting a motion for a members debate on access to medical cannabis for drug-resistant epilepsy.

The motion is now considered eligible for debate, and will be the first of its kind to take place in the Scottish Parliament.

It comes as Ms Stevenson has been supporting the family of Cole Thomson, who has been seizure-free since 2019 thanks to medical cannabis, in their campaign for NHS access. The debate will help highlight the various issues the family has faced in funding the treatment. 

“The first time Cole had a seizure, it was 2012, and he was three and a half months old. He was in my arms, and suddenly his eyes widened like something had come into view. It would have been easy to miss, but as I was already mum to a two-year-old I knew something wasn’t right,” says mum of nine-year-old Cole, Lisa Quarrell, who pays £1,300 a month for her son’s life-saving whole plant cannabis oil prescription.

“Cole’s dad, David, put it down to me being an overprotective mother, but the following day Cole did the same thing again and by the end of the week I managed to film him doing it 10 times. It was obvious something wasn’t right, so I took him to the doctors.”

Every parent’s worst nightmare

After taking blood tests, urine samples and having a thorough check over, Cole’s GP deemed him to be perfectly healthy. That’s when Lisa showed him the video, and his face dropped.

“We were told to go straight to the hospital,” Lisa continues.

“When we got there, the nurse made out like these spasms were totally normal, but when the paediatrician saw it happen she told us it could be West syndrome – a condition where both sides of the brain malfunction. I was terrified.”

Cole was taken to Glasgow Children’s Hospital, where Lisa was given the news that is every parent’s worst nightmare: the best case scenario was that Cole would live, but be severely disabled. 

The worst case was that he would die before he was five-years-old.

“We couldn’t believe it, until a week ago we had a three-and-a-half-month old baby who was perfectly healthy,” says Lisa.

“We were living in a bubble at that stage because when you’ve got a new baby everything is amazing and new. Then ‘boom’ our whole world was turned upside down.”

After four weeks of waiting, desperately trying to not live in the awful reality they were now faced with, Cole’s results came back. He had focal epilepsy, which meant the tissue was damaged on the left side of his brain. 

He was given a two week course of strong steroid medication, in the hope that once he was weaned off, the seizures would stop.

Scottish debate secured on behalf of 9-year-old seizure-free thanks to cannabis

Cole began having seizures at just a few months old

But devastatingly, they became worse. What had been infantile spasms, became full focal seizures. His little body would go rigid, his breathing would become heavy, and he would make repetitive clicking noises until the seizure passed.

From then on, Cole had three to four major seizures a week and was tried on nine different anti-epileptic medications, all of which came with negative side effects, and none of which helped. 

When he was 18 months, Cole’s consultant told Lisa and David that as the drugs weren’t working, brain surgery was the next step.

“Both Cole’s dad and I were against it, but we went for all the meetings and then his seizures suddenly got really bad, so we started the process for brain surgery,” says Lisa

Cole had a left temporal lobe lesionectomy, and had a two centimetre squared area of his brain removed. 

Although he recovered quickly with no side effects, the seizures came back six months later. 

Sadly, this meant that Cole was a candidate for a second brain surgery that would be much more serious. The damage was near his vision and movement and speech. If they cut any more away it could leave him paralysed.

But, in June 2018, everything changed.

Desperate for a solution

“Cole was having 12 seizures a day, his speech was slurred and his walking was affected. The doctors had said there was nothing else they could do. I was desperate,” recounts Lisa. 

“That’s when I put a plea out on social media. I was looking for any solution other than surgery.”

Lisa created a Facebook post asking: “is there anything anywhere in the whole world that you think could help Cole? I don’t care what it is or how much it costs, I’ll do anything I have to to get my boy better.”

Every response came back saying “cannabis”.

Lisa wasn’t convinced. Having been a police officer for a decade until 2013, her understanding of cannabis was extremely negative. 

Scottish debate secured on behalf of 9-year-old seizure-free thanks to cannabis

Cole, before and after cannabis

“I was blindsided, I thought cannabis was a demon,” she admits.

“I remember saying ‘I’m not putting my son on cannabis. It causes psychosis, withdrawal, mental health problems, it’s a gateway drug’ – everything that people who are ill-informed think.”

But then Lisa started to research, not because she wanted to see how good it was, but because she wanted to find evidence to back up what she now knows to be misguided views. 

“I wanted to prove it was nonsense, but anything negative I saw just happened to be a study performed by a pharmaceutical company, a religious group or anti-drug organisations,” she says.

“There was never a scientific view that was against cannabis, it was all very positive.”

In October 2018, Cole took a turn for the worse and began suffering from Todd’s paralysis, a neurological condition in which a seizure is followed by a brief period of temporary paralysis.

“Cole would come out of a seizure and be paralysed. He was confused, unable to sit up, he would wet himself,” says Lisa.

“It would last about an hour at first, then it progressed until he would be paralysed all day. I couldn’t work, I couldn’t take my other son to school, it was like living in a nightmare.” 

That’s when Lisa took the plunge and began treating Cole with an over-the-counter, full-spectrum CBD oil, recommended by the Kalapa Clinic in Barcelona. Within three days the paralysis had completely gone and his seizures decreased from 12 to nine a day.

Seeing such incredible results when all else had failed, made Lisa realise that she had to get a whole plant cannabis oil for Cole. 

“We nearly lost him”

In December 2018, after putting pressure on First Minister, Nicola Sturgeon, Lisa was told Cole’s name had been ‘picked out of a hat’ and he was to be given one of only five prescriptions in Scotland for Epidyolex. 

But Lisa knew he needed the benefits of a whole plant oil, she says: “I didn’t want to move Cole from a whole plant to isolate, but his consultant urged me to try it. He said ‘it’s free, what’s the worst that could happen?’ And I trusted him.”

Lisa weaned Cole off his over-the-counter CBD oil in preparation for switching to Epidyolex. But on the way to hospital to receive his first dose, Cole collapsed. The Todd’s Paralysis was back, and while being treated with Epidyolex, his condition got worse and worse.

“He wasn’t recovering from Todd’s Paralysis, he started having up to 20 seizures a day which is the most he’s ever had and breakthrough seizures during the day. I had to stay off work. He lost the ability to walk, speak and eat,” Lisa says.

In March Cole was rushed into hospital unresponsive.

“We nearly lost him,” says Lisa.

After extensive blood tests, a lumbar puncture, MRI, CT scan and urine tests that came back clear, the doctors told Lisa: “He just has epilepsy, this is just the way it’s going to be. If you continue with this nonsense, this internet propaganda about cannabis medicines, Cole will die. You need to get him in for surgery, now.”

Scottish debate secured on behalf of 9-year-old seizure-free thanks to cannabis

Cole even attends Taekwondo lessons

Finding success with cannabis

Fortunately, just before Cole was rushed into hospital, Lisa had travelled to Holland to access the whole plant cannabis oil, Bedrolite. Then, as so many other parents have been forced to do, she smuggled the oil back to the UK. 

“I brought the Bedrolite into the hospital and told the doctors I was going to give him his cannabis oil,” she says.

“They assumed I meant the legal CBD oil from before, so they said ‘We’ll turn a blind eye to it but we won’t support it.’ I had to give it to him when no one was in the room.”

Lisa gave him his first dose and that night the seizures halved. The following night they halved again. 

Eventually, Lisa found the perfect balance of Bedrolite, combined with another unlicensed drug, funded by the NHS, Dilantin. 

Apart from some breakthrough seizures when his Bedrolite dose was briefly reduced and when Dilantin became unavailable, Cole has remained seizure free since.

Now, he goes to school, rides a bike and even attends Taekwondo lessons. 

But it’s an immense struggle, both emotionally and financially, to raise £1,300 a month for the privilege. 

Lisa and Cole undertake regular fundraising activities, most recently braving a fire walk which raised enough money to keep Cole safe for another six months. 

But beyond that point, until he can access this life-saving medication on the NHS, Cole’s future remains uncertain.

Lisa says she has even written to the Scottish Government, pleading with them to help fund Cole’s medicine until cannabis is more widely available on the NHS. But she was told it was “a misuse of NHS funds” to pay for his private prescription. 

The NHS and the National Institute for Health Research (NIHR) are said to be working on two RCTs to compare the effects of medicines containing isolated CBD, and isolated CBD with THC, and a placebo.

But while trials are welcomed by campaigners, they will not be suitable for children like Cole, who rely on whole plant cannabis.

Lisa wants the Government to consider observational trials alongside RCTs, as well as making funding available for families facing these crippling costs now.

She says: “I am grateful to have Collette onboard, and to her for submitting this motion. This is another first for us and I hope this will highlight our fight again within the Scottish Parliament and show just how broken the current system is.

“I want to be clear though, that clinical trials are of no use to Cole and will not help him or other children currently taking this medicine, as no parent whose child is safe on a medicine, would ever consider taking them off it, risking their life to give data.

“If the Scottish Government is serious about fixing this they would look at observational trials plus clinical trials and put their money where their mouth is and have funding made available immediately.

Lisa adds: “I fear with the government and NHS only focusing on trials, children such as my son who have paved the way for this medicine will be left behind and forgotten. There must be a long term solution for our children too.”
 
Ms Stevenson added: “I’m keen to hold a members’ debate and highlight the various issues Lisa and Cole have faced. Funding for this treatment is incredibly expensive and that of course leaves Lisa and Cole in a difficult situation as they try and raise funds.

“The current Home Office rules only allow certain doctors to prescribe cannabis-based medicinal products but I understand there is a hesitancy for unlicensed products given the lack of clinical trials. I want to see these trials go ahead – supported by the manufacturers, academics and government, so that NHS consultants can have the confidence to consider prescribing this type of treatment.

“Additionally, I’m keen to discuss the calls for a rule change to allow GPs to be able to prescribe unlicensed cannabis-based medicinal products where a non-NHS consultant has initiated that course of treatment. I pledged to do all I could to help Lisa and her family and I am keen to see the necessary changes which would have this resolved once and for all.”

You can donate to Cole’s campaign here 

 

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