A Mother’s Mission: the Fight for Medical Cannabis Justice
How far would you go to save your child’s life?
For Joanne Griffiths of Preston, UK, that question has defined her every day for years.
A Mother’s Mission:
Her 14-year-old son, Ben (aka “Boisterous Ben”), lives with severe epilepsy, cerebral palsy, and autism. Since he was six months old, Joanne and her husband Paul have been navigating the difficult journey of managing Ben’s seizures. Cannabis medicine has been life-saving, helping Ben manage not only his seizures but also the damage caused by them. At one point, he endured up to 300 seizures a day, some lasting for up to 25 minutes. His life was at constant risk. Traditional medications failed. Hospitalizations were frequent. The outlook was devastating. Ben’s seizures include tonic and drop seizures, among others. These seizures have led to numerous injuries, and in epilepsy, every seizure carries the risk of brain damage or even being fatal.
Ben first tried a 1:1 oil from the Kootenay Medical Tree Clinic in Canada in March 2018, and his seizures reduced to just six a day. However, the THC content was too high, so in July 2018, we asked our NHS neurologist to fill out the government access forms, which he did. Unfortunately, the new medical director never sent them. Ben had an allergic reaction to an isolate that is now licensed on the NHS, but they offered a second opinion. As a result, we consulted a private neurologist who prescribed Bedrolite and Bedica.
Then came Bedrolite and Bedica, cannabis-based oils prescribed privately in the U.K. and made in the Netherlands. Ben’s improvements were life-changing. Within weeks of using a full extract medical cannabis, his seizures reduced dramatically again. Ben began to have seizure-free days—an unthinkable dream just months earlier. For the first time, there was hope.
But in the UK, hope comes with legal risk.
In short, Joanne is experiencing a deeply frustrating and dangerous situation where, despite repeated government assurances, access to her child Ben’s life-saving cannabis-based medicine remains uncertain and inconsistent. After the Brexit transition, the UK government initially warned that Bedrocan oils from the Netherlands would no longer be dispensed for UK prescriptions. Although a temporary extension was granted by the Dutch authorities in early 2021 to continue supply until July of that year, the long-term solution involved a UK-based company producing it domestically. Since then, families like Joanne’s have faced repeated disruptions, limited availability, and the burden of traveling abroad to secure medication, despite ongoing assurances of “continuity of supply.” Meanwhile, only a select few children receive NHS funding for the exact same Bedrocan oils that Ben needs, highlighting not just a supply issue but also a stark funding disparity. Ben faces not only the risks of treatment-resistant seizures but also the devastating consequences of a fragmented, inequitable system. This ongoing battle raises urgent questions about the real-world accessibility of medical cannabis, the prioritization of vulnerable patients, and the depth of the government’s commitment to those who rely on it most. Ben nearly died when he ran out in 2023 of bedica due to the government not allowing electronic prescribing of this medicine.
“The UK government said they would ensure a safe supply after Brexit, but that was me going abroad just last week because there was no bedrolite or bedrocan in the UK and the bedica had an expiry date that would run out before we could use it, so who’s going to pay for meds that will expire before you can use them.” says Ben’s mother, Joanne.
Joanne Griffiths didn’t choose to be an activist. She became one the day her son Ben began having hundreds of seizures every day and no one could help. Her journey to medical cannabis wasn’t about politics, it was about survival. Now, with nothing but determination and a mother’s love, she’s fighting to change UK law so no other family has to face what hers did.
When Compassion Becomes a Crime
Despite cannabis being legalized for medical use in the UK in 2018, the system is broken. Fewer than six NHS prescriptions for full-extract medical cannabis have been issued to children like Ben.
Families like Joanne’s are forced to:
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Pay privately (often £1,000–£2,000/month)
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Import medicine under tight regulation
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Or travel abroad and bring it back themselves, risking arrest or seizure
When Brexit cut off access to Dutch suppliers in 2020, Joanne had no choice but to personally fly to Holland to secure her son’s medication. That act, a desperate bid to keep her child alive, technically makes her a criminal under UK law.
“It’s absurd. I’m breaking the law to save my son. “How is that right?” says Joanne.
⚖️ Legal In Name Only
The UK made medical cannabis legal, but not accessible.
NHS doctors fear prescribing due to outdated guidelines and lack of clinical trials.
The British Paediatric Neurology Association discourages cannabis-based treatments, despite clear patient success.
Private options are unaffordable for most families.
In other words, the law changed, but the system didn’t.
Joanne’s Impact: Turning Pain into Purpose
Joanne didn’t stop with helping Ben. She co-founded Intractable, a charity that raises funds to help other families pay for private prescriptions and access vital care. Intractable can also be found on Facebook, here.
She’s spoken in Parliament, engaged with UK media, and rallied online communities to keep this issue on the agenda.
This isn’t about recreational cannabis. This is about children dying unnecessarily while safe, proven treatments exist – just behind walls of bureaucracy, stigma, and inaction.
“It’s crippling, it is a financial burden,” said Joanne
The Risk is Real
Urgent Appeal (please click to read): The Crisis of Bedrocan Oil Supply in the U.K.
Joanne is not alone. There are dozens of UK families living in this same legal grey zone:
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Forced to smuggle in medicine
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Living with the anxiety of customs, seizures, or arrest
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Watching their children deteriorate when the solution is known
And yet, no one in government has been held accountable.
What You Can Do
This story needs to be told. Over and over. Until change happens.
✅ Share This Story – Don’t let Joanne and Ben fight in silence.
✅ Donate to Intractable Epilepsy – [here]
✅ Write to Your MP – Demand access, funding, and justice.
✅ Challenge the Stigma – This isn’t about “stoners.” It’s about science. About survival. About compassion.
✅ Speak Up – Use your platform, voice, and community to push the conversation forward.
Boisterous Ben: A Platform for Change
Joanne’s fight for medical cannabis access continues through her Boisterous Ben Facebook page, which has become a vital resource for advocacy and community. It is a space where Joanne and other families can share their experiences, advocate for their children’s rights, and connect with others on similar journeys.
On the Boisterous Ben page, you’ll find:
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Personal updates on Ben’s progress and challenges
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Stories from other families facing similar struggles
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Information and resources on accessing cannabis-based treatments
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Calls for legal reform and policy change
“Boisterous Ben is more than just a name. It’s a statement. Ben is strong, he’s brave, and he’s not going to be silenced.”
– Joanne Griffiths
Joanne’s advocacy is making a difference, but there’s still so much to do. Her page and further online support continue to grow as a community-driven movement, connecting families and pushing for greater access to medically necessary cannabis treatments for children across the UK.
Final Thoughts
Joanne Griffiths is not a criminal.
She is a mother. An advocate. A lifeline.
She represents countless families across the UK caught between outdated laws and desperate need. This isn’t just her fight. It’s ours, too.
Laws are made by people, and people can be wrong.
If a government can make a law, it can change one.
If a mother can move mountains, we can move policy.
“I’m not a criminal. I’m a mother trying to keep my son alive.”
Get Involved
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Like and Share the Boisterous Ben page to amplify the message and help educate others.
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Support Joanne’s Charity, Intractable, to ensure that families can afford necessary treatments.
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Write to Your MP and demand changes to make medical cannabis treatments more accessible to children like Ben. Visit the End Our Pain website & enter your postcode and a suggested draft email will come up to send to your MP. The only reason that you’re asked to enter your address is so that the MP can verify that you are in his/her constituency. Please feel free to customise your draft.
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Challenge the Stigma by sharing stories of success and medical efficacy.
- Sign the Petition → Urgent Government Reimbursement Scheme for Children Accessing Medicinal Cannabis
Together, we can make a difference.
Welcome to Intractable Helping Children, Young Adults, And Their Families. Giving Children Their Lives Back Intractable is a Charity Helping Children and Young Adults with private medical cannabis costs. At Intractable, we support children with intractable epilepsy by offering financial aid for prescribed medical cannabis and raising awareness. Our mission is to empower families and improve lives through essential resources and information.
Find Intractable on Facebook, here.
End Our Pain has been a vital voice in the fight for fair access to medical cannabis in the UK. For mothers like Joanne Griffiths, it is more than advocacy, it is a lifeline. Their campaign has helped bring attention to families fighting for their children’s right to life changing treatments like Bedrolite and Bedica. In the face of outdated systems and political inaction, End Our Pain continues to stand beside families like Joanne’s, demanding compassion, justice, and real reform.
Find END OUR PAIN on Facebook, here.
Revolutionary Research on the ECS, cannabinoids and cannabis-based medicine for healthcare from a trusted nonprofit.
