REAL STORIES: UK PATIENTS LIVING WITH MEDICAL CANNABIS
Real Stories: UK Patients Living with Medical Cannabis
INTRODUCTION: WHY PATIENT STORIES MATTER
Since the UK legalized specialist medical cannabis use in November 2018, thousands of patients have turned to it as a lifeline—especially when conventional treatments failed. Personal stories put faces to statistics, revealing both the transformative effects and ongoing hurdles in accessing these medications through NHS or private clinics.
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ALFIE DINGLEY & THE EPILEPSY CAMPAIGN
BACKGROUND & FAMILY STRUGGLES
Alfie Dingley, diagnosed with PCDH19 in early childhood, faced debilitating seizures—up to 100 per day—until his mother, Hannah Deacon, moved heaven and earth to secure cannabis oil for him .
BREAK-THROUGH IN HOLLAND
In the Netherlands, Alfie was prescribed Bedrolite (a cannabis oil) and after 17 seizure-free days, his parents knew it was working .
LEGISLATIVE IMPACT
Their campaign was pivotal in changing UK law. Though Alfie had a breakthrough, many children with the same condition still cannot access NHS-funded treatment .
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TOM EVANS, ADHD & MEDICATION SHORTAGE
WHEN RITALIN WAS UNAVAILABLE
Tom, from Brighton, had ADHD and relied on Ritalin. Following shortages, he turned to private-clinic prescribed medical cannabis, which he notices helps him sleep and focus better .
> “Even if I could get ADHD medication, I’d prefer to stay on medical cannabis… It lifts my mood, improves my focus and doesn’t interrupt my sleep.”
He now works as a caretaker and content creator with over 70k followers—something he credits to this new treatment.
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PAUL NEALE: FROM MORPHINE TO MEDICAL CANNABIS
ENDURING CHRONIC PAIN
Paul, diagnosed with DISH spine disease, was on large doses of morphine and diazepam. In 2019 he became the first person in Wales to receive a medical cannabis prescription .
LIFE-CHANGING RESULTS
He says the cannabis prescription “saved my life.” He replaced opioids, regained energy, and reconnected with his children and community :
> “Now I’m genuinely the best dad I can be.”
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MIKE ROBERTS: CANCER, CHEMOTHERAPY, AND CANNABIS
FIGHTING CHEMO SIDE-EFFECTS
Mike struggled with intractable chemotherapy-induced nausea and vomiting before getting a private prescription in 2022. He later secured NHS funding—becoming the first UK patient with cannabis flower coverage .
RESTORING NORMALITY
Cannabis improved appetite, mood, and sleep—allowing him to work part time and enjoy family life again .
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PARENTS AND CHILDREN: ESPERANZA & MARLYSE
MARLYSE’S PAIN BATTLE
Marlyse fought CRPS (Complex Regional Pain Syndrome), taking copious painkillers before switching to medical cannabis. She now uses different strains for daytime pain and evening calm :
> “If I didn’t have medical cannabis… I think I would literally still be stuck… crying in pain.”
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OLIVER & HANNAH: ADHD, ANXIETY, AND PARENTING
OLIVER (Ollie), ADHD
Ollie chose cannabis via Releaf Clinic for ADHD. He highlights feeling present, focused, and better in his role as father and partner :
> “My treatment…allows me to just be in the moment; to be present…”
HANNAH, ANXIETY
Grieving her mother sparked debilitating anxiety for Hannah. Medical cannabis helped her leave the house again—enabling activities like weekend trips with her child .
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AMANDA LOWE: BREAST CANCER AND LEGAL ACCESS
Amanda, a 55‑year‑old grandmother, previously bought illegal cannabis to manage post-mastectomy pain. She’s now on prescription, giving her peace of mind :
> “I don’t have to worry about sourcing it anymore… It’s a game‑changer.”
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SYSTEMIC ISSUES: COST, SUPPLY & STIGMA
HIGH COSTS & PRIVATE CLINICS
Moving private often means paying £100s per month. Many re-mortgage or go into debt .
SUPPLY CHAIN GAPS
Some patients face weeks without prescriptions due to stock shortages and pharmacy distribution issues .
ONGOING STIGMA
Patients describe being judged, policed, or discriminated against—even with prescriptions. One found mental health facilities more tolerant than general hospitals .
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SUPPORT NETWORKS: PATIENT GROUPS & OUTREACH
RELEAF UK & SANSAKARA
Organizations like Releaf, Volteface, Sanskara Platform, and PatientCann empower patients through education, advocacy, and community support .
POLICY AND STIGMA WORK
Insights from Dr Leon Barron and others emphasize the need for GP training to overcome outdated stigmas around cannabis prescriptions .
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WHAT THESE STORIES TEACH US
1. MEDICAL BENEFITS
Dramatic symptom relief in epilepsy, pain, nausea, ADHD, anxiety
Patients report better focus, mood, sleep, reduced meds
2. ACCESS OBSTACLES
Very few NHS prescriptions—mainly via private clinics
High costs, inconsistent supply, and insurance gaps
3. STIGMA AND SAFETY
Legal prescriptions reduce fear but don’t eliminate stigma
Misinformed healthcare providers and police still issue warnings
4. IMPORTANCE OF PATIENT VOICES
Real stories drive legislative change (e.g., Alfie, Billy)
Highlight enduring inequities in access and affordability
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MOVING FORWARD: IMPROVEMENT & HOPE
EXPANDING NHS ACCESS
If conditions like MS, chronic pain, ADHD, and Parkinson’s gain NHS traction, more people could benefit.
REDUCING COSTS
Subsidies like Project Twenty21 and Sapphire schemes are bringing costs down—more of these are needed .
TRAINING PROFESSIONALS
Broad GP education and shift in hospital policies can reduce stigma and improve care coordination .
BOLSTERING SUPPORT NETWORKS
Groups like Releaf and Sanskara provide essential guidance, advocacy, and solidarity for patients and families .
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CONCLUSION: FOR PATIENTS & POLICYMAKERS
FOR PATIENTS:
Know your rights—specialist prescriptions are legal since 2018
Explore private routes if NHS access fails
Get involved with support groups and document benefits
FOR POLICYMAKERS & PROFESSIONALS:
Simplify NHS pathways for evidence-backed conditions
Subsidize prescriptions, expand Project Twenty21
Mandate stigma training for healthcare providers
Ensure uninterrupted supply and prescription distribution
