Connect with us

Case Studies

“We don’t get a day off from our conditions – we need change now”



On Medical Cannabis Awareness Week, PLEA advocacy lead, Lucy Stafford told Sarah Sinclair about how medical cannabis saved her life – and why she won’t stop until everyone has access.

Lucy Stafford has a tiny sunshine tattooed on her wrist.

She shows it to me over Zoom when I ask her how it felt to discover cannabis after years of living with a debilitating health condition.

“I can’t explain what it’s like to spend all of your teenage years unable to think clearly, unable to engage in a conversation, losing your memory for weeks at a time and then suddenly having it all returned to me – I was like a new person,” says Lucy, now 20.

Having battled with the symptoms of Ehlers Danlos Syndromes (EDS) – a condition which affects various parts of the body and for which there is no cure  – most of her life, Lucy wasn’t diagnosed until at the age of 16.

By then she had already been taking opioid-based medication daily for three years, having first been prescribed them at the age of 12 to help manage her pain.

“I was in so much pain, in all of my body,” she says.

“I had all these different things going on all the time – I needed surgery on my hip, my spine, my jaw, my stomach, my bladder – no one could join the dots.”

By 17 she was on fentanyl, a drug 50 times stronger than heroin.

“At the time I didn’t know how strong these medications were, I was young and in huge amounts of pain, crying myself to sleep most nights,” she remembers.

“The side effects of these medications are really scary, they affect your breathing and how your body works and I would get withdrawal symptoms if I missed a dose.”

She had to drop out of school, needed the use of mobility aids and a feeding tube and throughout her teenage years, existed in what she describes as a ‘haze’ of symptoms from the medication.

“I’m lucky that I had a few friends who were really supportive and would come and visit me in hospital – they were my lifeline – but I couldn’t go into town with my friends, I couldn’t go to school.

“For quite a few years my doctors were my only social contact out into the world. My quality of life was non-existent.”

Lucy continues: “My doctors told me that realistically I would be lucky to get through my 20s with the medications I was needing, but honestly, I barely thought about the future, I was so dulled out. I was just trying to stay alive, minute by minute, hour by hour, day by day.

“That’s how I envisioned the rest of my life, until medical cannabis took me on a different journey and literally, saved me.”

It was actually Lucy’s doctor who first suggested cannabis and tried to write her a prescription in 2018, around the time that the law was changing. But it was denied by the multidisciplinary team on the grounds of a ‘lack of evidence’.

With no way of legally accessing it in the UK, Lucy and her mum took a train to Amsterdam where she tried cannabis for the first time. She saw a difference almost instantly.

“I’d had this weird fever for around a year and it just went,” she says.

“We had a bit of a joke about it being because we were away, but it didn’t come back, and that night I slept well and I wasn’t waking up in the morning being sick.”

When she returned to the UK, like many patients, Lucy was forced to resort to accessing her medication illicitly. But despite the risks she had to take, she now says she has no regrets – if she hadn’t she would never have known how life-changing medical cannabis would be for her.

“That risk saved my life, but it’s upsetting that back then I couldn’t have got my medication through a legitimate route,” she says.

“I would never have thought that I’d be in a position where I had to break the law to just be well.

“You don’t think you’re going to end up in a McDonald’s car park doing a drug deal when you’re really sick. No vulnerable person should ever be in that position, but that we have no other option.”

Lucy is now enrolled in Project Twenty21, the pioneering study which is subsidising the cost of prescriptions for medical cannabis patients, in a bid to create the largest body of evidence in Europe for the efficacy of cannabis-based medicines.

Since having a consistent, regular prescription for her medication Lucy says her life has been transformed.

“When you’re using this to be able to function throughout the day, you need a consistent supply of medication, you need somebody to advise you on what you should be taking and how much – and unfortunately most patients still do not have access to that,” she says.

“When I was medicating illicitly sometimes it would work, sometimes it wouldn’t and that’s just not what you need.

“I have bad days still, but knowing I can take my medicine and it will help has made such a big difference.”

Lucy is now able to walk up to 5km a day and does yoga to help her symptoms.

“I have energy all day every day, it’s amazing. Now exercise is something that makes me feel better,” she says.

“I always thought I was lazy but I was actually just exhausted from the side effects of the ridiculous medication that I was on.

“I’m just trying to work out where I fit in the world now.”

She is studying for a science degree and hopes to work in neuroscience research, but not before she has secured equal access for patients through her advocacy work with PLEA (Patient-Led Engagement for Access).

Lucy is advocacy lead for the organisation, which was formed earlier this year to focus on getting cannabis based medicinal products prescribed on the NHS and to reduce the inequalities that currently exist for patients.

It is a role which is important to her above all else.

“As soon as you enter an organisation like PLEA you meet so many patients and see the magnitude of the issue. It’s something that can’t be ignored anymore,” she says.

PLEA also provides a community for patients and support to those who are already going through the process of accessing a prescription, which can be ‘overwhelming’.

“It can be quite an isolating experience and having a community of people that have been through it to support another is invaluable,” says Lucy.

“That lived experience is something that needs to be valued and learned from and that’s what PLEA is all about, ensuring the patient voice is always there.”

The launch of PLEA’s first Medical Cannabis Awareness Week (from 1-8 November) – which Lucy has spearheaded – is a full-throttle attempt at improving public understanding and ultimately, destigmatising medical cannabis.

Despite people around her being supportive, Lucy still has to deal with the stigma of her medication in her day to day life.

“Undoubtedly you get the eye rolls and people assume that it’s ‘just a bit of weed’ to chill you out,” she says.

“People don’t give it the respect that other medications have or won’t engage with the conversation because it makes them uncomfortable.

“The week is about making medical cannabis something that we can’t ignore anymore – we need access to this for everybody, just as the NHS was set up to be.

“There is so much suffering for patients living day in, day out with these illnesses,” she adds.

“We don’t get a day off from our conditions, we need change now.”

For more information visit


Cannabis Health is a journalist-led news site. Any views expressed by interviewees or commentators do not reflect our own. All content on this site is intended for educational purposes, please seek professional medical advice if you are concerned about any of the issues raised.

Copyright © 2023 PP Intelligence Ltd.