Watch: families for medical cannabis – Mitchell and Caroline

Unable to access medical cannabis on the NHS, Caroline Gisbourne was forced to turn to illicit means in an attempt to help her son.

In a new series in collaboration with Medcan Support, we share the stories of families whose lives have been impacted by epilepsy and medical cannabis.

Mitch’s story

Mitchell Gisbourne – known as Mitch – was five months old when he caught Herpes simplex encephalitis (HSE), leaving him in intensive care for seven weeks. He was later diagnosed with epilepsy as a result of inflammation in the brain, caused by the condition.

Over the years doctors prescribed eight different anti-epileptic drugs, all of which failed to Mitch’s his seizures under control. 

As a result in 2014 he underwent a corpus callosotomy – a form of brain surgery used to treat refractory epilepsy by reducing seizure activity between the two halves of the brain. But the procedure was also unsuccessful.

A second surgery in 2016 had a better outcome, but Mitch was only seizure-free for a matter of weeks before his symptoms started again. 

Discovering CBD and THC

Despite being told by health professionals not to try CBD, Mitch’s mum, Caroline Gisbourne was desperate. She bought a bottle over the counter and within 48 hours her son was seizure-free.

“I’ve never seen anything like it in my entire life,” she says.

“I didn’t tell anybody what I was doing, but three months later nobody at school could believe the change in Mitch, he was making so much progress. I had to disclose I’ve given him CBD, but they were all delighted about it, because he was seizure-free.”

But when Mitch hit puberty his seizures started to become more frequent again. Being autistic, Mitch began experiencing extreme anxiety, heightened by the coronavirus lockdown in 2020.

When somebody from the illicit cannabis community reached out to Caroline in 2020 and offered to supply her with cannabis oil containing THC, she says she felt “relief” rather than reservation

She had tried to access a prescription through the NHS but was dismissed and couldn’t afford to take the private route, which at the time could cost up to £2,000 a month.

“I was concerned about the risks of social services, but I felt relief that somebody had offered it to Mitch,” Caroline admits.

“I had been researching THC and I knew I couldn’t get a prescription at the time – I thought there’s no point me even looking because I couldn’t afford it.

“I started Mitch on 0.01mg a day and over 12 months gradually got him up to 1mg twice a day. His seizures stopped again.”

Treated like a criminal

Mitch is now 14 and has been taking THC with success for two years. But at a recent meeting with the family, his social workers suggested he should be moved to full-time residential care. 

Caroline had no choice but to admit that he was relying on THC to prevent his seizures.

Police arrived at the family’s home the next day to remove the oil. 

“I knew what would happen if I disclosed that, but I had to – there is no way I am putting my baby into residential care,” she says.

“I was devastated, I feel like I’m being treated like a criminal and all I am doing is trying to save my child’s life.”

Now that the costs have reduced slightly, Caroline was able to find a private clinician who agreed to prescribe cannabis for Mitch.

But she is unsure what the future holds for the family.

“I’m in limbo, I have a meeting with the police in a couple of weeks,” she says.

“No one has a clue about medical cannabis, it’s so frustrating. Still to this day they don’t want to acknowledge the fact that Mitch has now got a private prescription; all they think is that I’ve done years of harm by giving him something that was illegal.

“Even when I try to show them the evidence they just dismiss it.”

NHS access

Like many families, Caroline needs medical cannabis to be available on the NHS, as was intended following the legalisation in 2018.

It’s not sustainable for her to keep paying hundreds of pounds each month for Mitch’s prescription.

“What do I want to see change? For somebody in the NHS to be able to prescribe. You just hit a brick wall wherever you go,” she says.

“Since we have had the prescription Mitch is so much happier, he’s enjoying life and interacting with all of us more. Before it was just a cycle of sleep, aggression and seizures, continuously. Now we don’t have to worry about that. I don’t have to sleep on the floor all the time.”

Caroline adds: “It’s not just improved Mitch’s seizures and quality of life, it has brought relief to the whole family.”

To find out more information and access support visit www.medcansupport.co.uk

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