Desperate parents expose six-year failure to implement life-saving medicinal cannabis law

Joanne Griffiths, director of End Our Pain and mother of a child with severe epilepsy, is spearheading a powerful campaign to expose the government’s continued failure to provide medicinal cannabis access for critically ill children.

Her personal experience mirrors the struggles of countless families across the UK, highlighting a systemic failure that has left vulnerable children without access to potentially life-changing treatments.

“Fighting for a medically complex child is so hard in the UK – you have to fight for every single need,” Griffiths explains:

But the biggest battle has been the fight for medicinal cannabis. We’ve been campaigning for seven years now, and the lack of progress is heartbreaking.

Medical cannabis: legal, but denied

The statistics paint a grim picture of the current situation:

• Only FIVE patients have received NHS-funded medicinal cannabis prescriptions since 2018.
• Families are forced to pay up to £2,000 monthly for private prescriptions.
• 84% of UK doctors would prescribe medicinal cannabis if NHS guidelines allowed.

“These numbers are more than just statistics” Griffiths emphasises:

They represent real children suffering needlessly, real families pushed to financial breaking points. We’ve witnessed children running out of medication due to financial constraints, with some families forced to fund up to £2,000 a month for treatment. It’s an impossible situation for many.

End Our Pain’s campaign is not just about highlighting problems; it’s about demanding concrete solutions. Griffiths outlines their key demands:

• Implement comprehensive observational trials for children already using cannabis-based medicines.
• Develop mandatory education programs for healthcare professionals to ensure understanding of medicinal cannabis.
• Streamline the prescription process, including allowing electronic prescriptions.
• Allocate dedicated NHS funding for medicinal cannabis research and prescriptions.

“Through our campaigning and volunteer work, we’ve seen the incredible impact full extract cannabis can have” Griffiths says:

We’ve seen how it can give children and young adults their lives back, repairing some of the damage caused by debilitating seizures. It’s not just about reducing seizures – though that alone is life-changing – it’s about improved cognition, better sleep, and overall quality of life.

It does work and is needed

The campaign points to success stories like that of Sophia Gibson, who experienced a dramatic reduction in seizures after receiving NHS-funded medicinal cannabis treatment. However, Griffiths is quick to point out that such cases are the exception, not the rule:

Even though the law around medicinal cannabis changed in 2018, so few epilepsy patients have successfully gained funded access. The bureaucratic hurdles are immense, and many families are left feeling abandoned by a system that promised to help them.

End Our Pain is not just advocating for children with epilepsy. Griffiths emphasises that their campaign encompasses a wide range of conditions that could potentially benefit from medicinal cannabis, including chronic pain, multiple sclerosis, and certain mental health disorders.

“We’re calling for a comprehensive approach” Griffiths states:

This isn’t just about one condition or one type of patient. It’s about creating a system that allows doctors to prescribe based on evidence and patient need, not arbitrary restrictions.”

The campaign is also addressing the lack of education among healthcare professionals and law enforcement. “Many doctors are still unsure about the legality and efficacy of medicinal cannabis” Griffiths explains:

And we’ve heard stories of families being stopped by police who are unaware of the 2018 law changes. This knowledge gap is causing real harm.”

End Our Pain is taking a multi-pronged approach to force change.

End Our Pain: make medical cannabis available on the NHS properly

They’re writing to the Home Office and police chiefs to demand answers on how the 2018 policy has been implemented. Simultaneously, they’re reaching out to NHS Trusts across the country, addressing reports that some patients are being denied access to their private medicine while in NHS hospitals.

“We will not rest until every child who could benefit from medicinal cannabis can access treatment without financial hardship or bureaucratic obstruction,” Griffiths declares. “This is about saving lives, reducing suffering, and fulfilling the promise made six years ago.”

The campaign’s revelations are set to put unprecedented pressure on policymakers. Griffiths challenges them directly: “We need answers. Why are children still suffering when safe, effective treatments are available? Why has the government failed to fulfil its promises?”

End Our Pain is calling on parents and supporters to join their fight:

Share your stories. Write to your MPs, join our campaign events. The more voices we have, the harder we are to ignore.

Griffiths concludes:

This isn’t just a campaign for us – it’s a fight for our children’s lives and futures. We’ve seen the transformative power of medicinal cannabis, and we won’t stop until every child who needs it can access it.

The campaign’s message is clear: children’s lives are at stake, and the government must act now to fulfil the promise made six years ago. With End Our Pain leading the charge, the pressure on policymakers to address this critical issue is set to intensify in the coming months:

End our pain specifically raised Minnie’s case before Christmas! Minnie’s case highlights the urgent need for access to observational trials as was the case in 2013 for a child in a similar position. @wesstreeting, children need your immediate help! https://t.co/Qee9PQfP5U

— End Our Pain (@End_Our_Pain) February 1, 2025

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