Patient Voices: Gillian – “I can’t talk to other mums about cannabis in the playground”

Access to medical cannabis has allowed Gillian to be a better mother to her six children, but despite having a legal prescription she is still fearful of speaking out and facing backlash.

After barely being able to move off the sofa due to debilitating chronic pain and the side effects of prescription drugs, Gillian Flood can drop her children off at school again. 

She no longer has to rely on her husband to take care of their six children – several of whom have additional needs – and can give them the routine they need.

“I can get up and take my kids to school. I can make them dinner and spend time with them doing things we enjoy,” says the 39-year-old.

“If I was having a flare, my kids wouldn’t understand that I wasn’t in control of that and it was really difficult, whereas as now it’s all manageable.

“I’m not just lying there too sore, or suffering the effects of the tablets I was on. Now even when things are difficult, it’s easier.”

Gillian was prescribed cannabis to manage the symptoms of fibromyalgia in 2020. It has reduced her pain and nausea so can get out of bed in the morning, and also helps with the symptoms of PTSD and depression.

“Even if I’m still in pain, I feel calmer and more in control. I know that I’ve got this helping hand,” Gillian explains.

“It stops the nightmares, that’s the biggest thing. I can sleep through the night and not wake up sweating and shaking – and if you can get a good night’s sleep it makes the next day a lot easier.

“I can get pleasure out of life, it means so much to me that finally I have something that not only improves things but doesn’t have any of the terrible side effects I have previously suffered on other medication.

She adds: “It may not be perfect but it’s a whole lot better than what it was.”

Gillian has experienced mental health issues since she was a teenager, but after her children were born her health deteriorated. 

It took six years of living with unexplained, debilitating pain – with doctors blaming it on the idea that she had “strained” her body by having children – before she was diagnosed with fibromyalgia in 2018. 

“I was getting all kinds of crazy pain, one side of my face had dropped and I was completely numb down one side of my body, I knew there was too much going on for it just to be a result of having children,” says Gillian.

She was initially prescribed gabapentin, which left her with “horrific” side effects.

“I felt like I was drunk all the time, I was staggering about and my speech was slurred,” she says

“Then I was on pregabalin but that didn’t work either and turned my brain to mush. It was really hard to think or concentrate, so eventually I came off everything.

Gillian continues: “I was in pain and felt sick all the time and I was either in bed or on the couch. I couldn’t play with the kids and my husband was having to do everything.”

She had previously raised the idea of cannabis with her doctor but had been told it was “not helpful” and might actually make her mental health symptoms worse.

“They said they wouldn’t treat my mental health problems if I was going to take cannabis,” she recalls.

“It meant it wasn’t an option for me, even though I thought it would work, because I’ve got kids in the house I felt a lot of pressure to do things legally.”

Although there were no medical cannabis clinics in Scotland at the time, Gillian researched getting a prescription online and found the process relatively straightforward. However, the costs associated with having to fund it privately is still a struggle for her, despite them slowly coming down.

“It’s challenging to afford it,” she says. 

“Some people have an attitude of ‘well it’s okay for you’ but we’re all making sacrifices, it’s not coming easy to anybody. 

“For the majority of us we have to cut things from other areas in our life to be able to afford it or borrowing money and running up debt.

“Yes, you get access to consistent medicine and see a doctor which is great, but another part of it is just because you don’t want to be breaking the law and that shouldn’t come at such a high cost.”

Gillian came across the patient-run advocacy group PLEA (Patient-Led Engagement for Access) last year, after looking for other cannabis patients she could connect with.

“I didn’t know any other patients and it was hard to find out about the different treatments,” she says.

“If you get put on gabapentin you can go online and read about millions of patients who are on it and learn about their experience.”

PLEA was founded in 2020 and is run voluntarily by a team of experienced patient advocates to challenge the inequalities in access to cannabis-based medicinal products and improve things for patients. 

“It’s helped massively to know that there are other people in the same position.

“People don’t talk about cannabis, it is frowned upon,” Gillian continues.

“I can’t talk to mums about it in the playground, but it’s normal to say at 11am ‘can we get the wine open yet?'”

Despite those close to her having been supportive of her prescription, Gillian still fears the stigma from people who aren’t aware of the medicinal benefits of cannabis, particularly other parents at the school gates.

“My family are all supportive, they’re just glad I’m feeling a bit better and even some friends who were anti-cannabis have actually changed their attitudes once they learned about the fact that it could be a medicine,” she says.

“But even though I have a prescription I wondered whether I should remain anonymous for this interview because I don’t want people to think bad of me.”

Gillian is now a member of PLEA’s Patient Working Group, which is helping to ensure patient’s voices are heard as the cannabis industry develops and access improves, which is something which can’t come soon enough for her.

“I know things take time, but I would like cannabis to be seen as more of a first line treatment rather than a last resort,” adds Gillian.

“I don’t blame the doctors, they don’t have the knowledge or are just going on what they’ve been told, but it’s wrong that they can prescribe these tablets that are really harmful and addictive, when there’s another option.

“If things had been different, I could have saved years of my life when my kids were young that I will never be able to get back.”

In our Patient Voices series, we’re sharing the stories of members of PLEA’s Patient Working Group.

Read Eppie’s story here 

Find out more about the PLEA patient working group here & visit pleacommunity.org.uk  for further resources