“There were times I felt judged at the school gates” – The stigma facing mums and children who use medical cannabis

Mothers who use medical cannabis to manage their own or their children’s conditions reveal the stigma they have faced in society.

Hannah Deacon is an award-winning campaigner on access to medical cannabis. 

Her son, Alfie Dingley, has a rare form of intractable epilepsy. At the age of six, Hannah took him to Holland for five months to access medicine containing THC which dramatically improved his symptoms.

On their return she led a successful campaign with the lobby group End Our Pain, that resulted in her son’s doctors receiving the first permanent schedule one license to prescribe medical cannabis on the NHS for him in June 2018. 

This campaign would help change the law a few months later in November 2018.

Alfie, who received the first legal NHS prescription for medical cannabis, still benefits from this nearly three years later. 

But now Hannah has opened up about the stigma she experienced from society and the judgement she felt from other parents at the school gates despite her efforts to save her son.

“I feel that cannabis medicines are still not widely perceived as legitimate medicines and even though we are nearly three years on since they’ve been fully legalised, there is still prejudice and misunderstanding,” she says.

“As a mother fighting to use literally life-changing cannabis medicines for my son Alfie, there were definitely times when I felt judged at the school gates, but I was in such a desperate situation that I focused on what I needed to achieve and tried to ignore the worries about what other people thought.” 

Hannah will take part in the second of a four-part webinar series brought to you by Integro Medical Clinics, Cannabis Health magazine, Cannabis Patient Advocacy and Support Services, with experts from MedCann Support and PLEA (Patient-Led Engagement for Access), highlighting the experiences of women who have struggled to feel supported by the healthcare system.

Hannah Deacon and son Alfie Dingley

On Tuesday 3 August, the discussion will focus on cannabis and motherhood, addressing the logistical and societal complexities facing mothers who are both prescribed medical cannabis and those whose children require cannabis medicines to manage their conditions. 

Finding herself in the public eye took a mental toll on Hannah, who was accused of getting her son “stoned” or “high” despite her fight to access what was a life-changing medicine for him. 

“Honestly, I’m not naturally an out-there, vocal sort of person and yes, I do care what people say and think of me,” she says.

“Being forced into campaigning in the way that I was did cause me mental health issues and huge stress. 

“It’s so frustrating when people don’t understand the fact that medicinal cannabis has zero to do with recreational cannabis or the pro-legalisation of the cannabis lobby.”

Hannah adds: “It’s an irony that I was accused of getting my son stoned or high on cannabis, which never happened, whilst I had to sit and watch him get wired and strung out on very strong and addictive prescription medication, which was so detrimental to him, but that’s okay because it’s legal and accepted in our current society.”

Since the legalisation of medical cannabis two years ago, many patients have discovered that the rebalancing of the endocannabinoid system (ECS) can be incredibly helpful in the management of numerous diagnoses. 

These range from chronic pain, fibromyalgia, MS, Parkinson’s, cancer treatment, epilepsy, ADHD, acquired demyelinating syndrome (ADS), gynaecological pain and PMS, to mental health conditions such as anxiety, insomnia and depression.

Women, in particular, are finding that cannabis-based medicines can be the key to managing either their own or their children’s chronic health conditions. 

But despite being legally prescribed medicinal cannabis, many of these patients experience shame and stigma when using it in their day to day life, mostly due to misinformation and a misunderstanding about cannabis in society as a whole.

Mum-of-five, Jessica Smith, found herself suffering chronic nerve pain after an accident left her with damaged vertebrae in her neck. 

Jessica Smith and her daughter.

She was prescribed increasingly strong traditional pain medicines, had regular steroid injections and was in her words certainly taking “way too many over the counter painkillers” to help her cope with daily life. 

At this point her specialist recommended anterior cervical discectomy surgery and as a last resort Jessica tried cannabis medicines. 

“I had absolutely no experience of cannabis and only contemplated trying cannabis medicines as an absolute last option to avoid having spinal surgery, which I was terrified about having,” she says.

“Prior to starting cannabis medicines, I was extremely short tempered and fractious with my family as I was in continuous pain. 

“All I really wanted to do was lie on my bed and not interact with the world around me. It’s so depressing suffering chronic pain and it sucks the pleasure out of everything – you don’t want to do anything other than be left alone. 

“The nerve pain continuously woke me through the night with pins and needles down my left arm and it felt like it was impossible to ever get comfortable in bed.  The less sleep you have, the worse the pain is and more run down, vulnerable and depressed you become.”

Jessica saw pain consultant Dr Anthony Ordman at Integro Medical Clinics, who she says helped “give me my life back”.

“When I first saw Dr Ordman, we stuck to his mantra of ‘low and slow’ and I listened very carefully to my body. Initially I was just taking THC and CBD oil but then moved on to vaping flower as well,” continues Jessica.

“After a relatively short period of time, I could feel a big reduction in my pain and my life just became much easier and better.

“There was a huge improvement in my mood and the concentrated THC oil I took at night ensured that I managed to sleep for six or seven hours, which made a terrific difference. I now exercise gently and am living a relatively pain free life as long as I don’t overdo things. I have also given up vaping and solely use oil three times a day.”

But Jessica says her friends and family would make jokes about her medication when they first found out.

Even though she knows they didn’t mean any harm by it, she finds it frustrating that cannabis is not taken seriously.

“There were lots of jokes I had to put up with from my friends about borrowing some of my flower, and my teenage sons loved shocking people by telling them ‘my Mum’s a cannabis user, but it is medicinal’,” she says.

“I knew this was all just nonsense and misunderstanding, so I just learned to ignore it. It is annoying though, because my pain was horrible and this amazing medicine that has nothing whatsoever to do with recreational drugs or getting high has changed my life. 

Jessica adds: “It allowed me to feel normal and be active. It certainly did not make me stoned in fact the reverse, it was the pain medications I was on that did this.”

Join Hannah Deacon, patient advocate and mum-of-six, Gillian Flood and clinicians Dr Sally Ghazaleh, pain management consultant at the Whittington Hospital and Women’s Health Consultant at Integro Clinics, and Sarah Higgins CNS, women’s health lead at CPASS to explore cannabis and motherhood on Tuesday 3 August at 7pm.

The webinar is free of charge, please register here

If you would like further information, or to make an appointment for a medical consultation with one of our doctors, please contact us at Integro Clinics:  

Website: www.integroclinics.com

Email: Contact@integroclinics.com

Twitter: @clinicsintegro