PLEA was launched in May this year and is already reaching and supporting hundreds of people across the UK fighting to gain access to the medication they so desperately need.
The group, Patient-Led Engagement for Access, PLEA, is a CIC, a Community Interest Company, set up by a group of like-minded medical cannabis patients and advocates, who are calling for fair access for all.
Abby Hughes, Outreach Director from PLEA, explained: “We are a group of people who have known each other for a number of years through our own medical cannabis journeys.
“We decided that there should be an advocacy group putting the needs of the patient first and that’s how it came about.”
Despite most of the founders battling their own chronic illnesses, Abby said they are passionate about helping others to gain a good quality of life and this spurs them on.
Fellow founder of PLEA and now Advocacy Director, Lucy Stafford, said hearing the stories of people who have approached the group, how awful their situations are and how heart-breaking the barriers they face are, is a good motivator to continue the fight.
She said: “This is literally destroying people’s lives. People need access to this medication.”
Battling The Cannabis Stigma
The two women say the three main barriers are financial costs of private prescriptions, geographical locations and the stigma, which many people still face.
Two years ago this month the law changed in the UK to allow medical cannabis to be available on the NHS, but since then only a handful of prescriptions have been issued.
Abby said out of desperation patients are having to fund private prescriptions, which in the early days could easily cost in excess of £1,000. She said although the costs have fallen patients would still be looking at between £100 to £200 for basic medication and substantially more for people with more complex needs.
She said many patients are on low incomes because they are too ill to work and could in no way afford the private prescriptions. Recent research estimates that up 1.4 million patients are forced to turn to the illegal cannabis market.
Most patients prescribed medical cannabis live with chronic pain, neurological or psychiatric conditions, such as fibromyalgia, multiple sclerosis, epilepsy, anxiety and PTSD – yet PLEA, which also supports research into the safety and efficacy of cannabis-based medicinal products, says many continue to face stigma in their day-to-day lives and from healthcare professionals when trying to access this treatment.
Abby, 32, who lives in Birmingham, said from being a teenager her life was wrecked by chronic pain and it took doctors eight years to diagnose endometriosis, a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.
She said it took a further five years for her to be diagnosed with Ehlers-Danlos Syndrome, which is a rare genetic disorder which affects connective tissue throughout the body.
Abby said she used to smoke weed for recreation as a teenager and it wasn’t until later that she made the connection between the drug and improvement in her health, both physically and mentally.
Since having a prescription for medical cannabis she says her life has changed dramatically for the better.
Abby said: “No-one is saying it is a miracle cure, but it gives people a better quality of life and that is so important.
“Before I would be stuck in bed unable to get up. I would be awake all night and then be so tired to the point of hallucinating and I couldn’t eat.
“Now, I am much more in a routine and am managing my pain better. I can get some sleep now and am eating much better.”
She continued: “It’s time to end the inequality and ensure everyone who needs it has the opportunity to benefit from medical cannabis treatment.
“We want people to have conversations about cannabis, ask questions and be open-minded.
“Cannabis medicines are changing people’s lives around the world. In the UK, people are forced to pay privately, and it’s not right.”
Lucy, 20, who lives in Brighton, also suffers from Ehlers Danlos Syndrome and said she took addictive opiate-based painkillers nearly every day of her teenage life to cope with the debilitating symptoms of the condition.
She said: “I started having really bad symptoms from about ten-years-old. I have severe pain all over my body and have had numerous operations.
“The only option for my pain relief was to be prescribed opiate-based painkillers. I had to drop out of school at 15 and live with the horrendous side effects. I was a shadow of myself.
“At the end I was on a feeding tube, unable to walk, unable to drink and my doctor had no idea what to do an what to prescribe.”
However, after hearing about medical cannabis, Lucy decided to give it a try.
She said: “When I was prescribed medical cannabis, it changed everything. I’ve learnt to walk after years using a wheelchair and I’ve got my life back.”
Lucy, who is now studying engineering and maths with the Open University, said: “Cannabis relaxes my muscle spasms, reduces my pain, and helps almost every aspect of my condition unlike anything else.
“All patients in need should have the same chance to live a better quality of life – we need NHS access.”
Medical Cannabis Awareness Week
PLEA’s aim is to collaborate with patients, clinicians and researchers as one community, sharing knowledge and experiences to advance medical cannabis.
Dr Mala Mawkin, Head of Market Development at Cellen Health, has joined PLEA on the Advisory Board. She said: “Even though doctors have been able to prescribe cannabis-based medicinal products since 2018, healthcare professionals are still not equipped with the knowledge and tools to prescribe in the UK.
“We have made huge progress to be able to have pharmaceutical-grade THC/CBD medicines for patients that are cheaper and safer than the illicit market. The next steps are to invest in research, medical education and address the stigma faced by patients.”
To mark the two years since the UK changed the law on cannabis medicines PLEA hosted the country’s first ever Medical Cannabis Awareness Week in November.
Abby added: “We were really blown away with the response to Medical Cannabis Awareness Week; we are thrilled to have hosted 15 events with 60 expert panelists and over 1150 event participants.
“Whilst we are incredibly happy to have had so many fascinating discussions and to have produced some really great content, the work continues behind the scenes to formally write-up the learnings from the week so that we can put into practice all of the brilliant patient-centred thoughts and ideas that came up.”
To find out more about the work of PLEA visit pleacommunity.org.uk