Boisterous Ben

Where is the research money? The Dutch government have just put in 1.4 million into trials for paediatric treatment resistant epilepsy and the use of Bedrocan #cannabis oils. Why is @10DowningStreet not doing the same for the #children in the #uk.

Ben has severe epilepsy and used to have up to 300 seizures a day. A medicine changed his life. But his family still have to pay for it privately every month because there’s no NHS access. That’s not right. There’s a petition that needs 100,000 signatures just to get a debate in Parliament. Just a debate. Please sign it, share it, send it to everyone you know, let’s make some noise 📷 petition.parliament.uk/petitions/7645…

Please sign here 👇 petition.parliament.uk/petitions/7645…

Ben’s twin brother shared this about him 💜 Please read and support 👇 facebook.com/share/1XMhe1dJ… Please sign and share the petition 🙏🏻 petition.parliament.uk/petitions/7645… #ForgottenChildren2018

Behind every seizure is a child, a parent, and a fight that never stops 💜 For many families, that fight includes access to treatment 🌿 This #PurpleDay we raise awareness for epilepsy and the reality families face daily. Why is access still a battle? ⬇️

On this day six years ago, the Health Minister and DHSC assured the End Our Pain campaign that a roundtable meeting with health stakeholders would be set up within two weeks. Here we are, still waiting! It’s incredibly frustrating to see such a crucial promise remain unfulfilled.

Great news from the BNF! Lara raised this important safety issue and we’re pleased to say End Our Pain has now received two responses: one from the MHRA in September 2025, and one from the BNF just this week. We’ll share more on this tomorrow. #MedicalCannabis #EndOurPain #PatientSafety

Liverpool MP @IanByrneMP says he's having sleepless nights over potentially having to vote against the Hillsborough Law. The stakes are very high if campaigners and Govt can't find a common ground, on how the legal duty of candour should apply to members of the secret service:

With April’s 25% NICE threshold increase for high cost drugs, time to reassess cannabis medications. 7 years, families denied @NHSuk access despite legalisation. Real-world evidence exists. @wesstreeting @NICEComms - will you commit to review? @ToniaAntoniazzi @PaulFosterMP

Compliance, Care & Capability: How Lyphe Leads the Way youtu.be/R-FMYmr73v0?si… via @YouTube #CannabISmedicine #MedCanAwareness #PatientAccess #lypheclinic

Disabled medical cannabis patients are being excluded from NHS hospitals because no other medicine worked! @wesstreeting what are you doing about this? My son nearly died when he ran out of his prescribed bedica and if we are not there to administer the medication the NHS won’t

@Legalisecanabo @JoanneGriffith5 @End_Our_Pain @NICEComms It’s been 30 years since the @10DowningStreet made THC a schedule 2 drug in 1995 for people suffering from cancer related symptoms to be prescribed without the need of a home office license. whatdotheyknow.com/request/explan…

@JoanneGriffith5 @End_Our_Pain @NICEComms It should eventually become available as a generic medicine.

SEVEN YEARS after medical cannabis was legalised, NHS hospitals are STILL excluding patients. Kat Turner was turned away from a specialist NHS hospital in Bristol because of her LEGAL cannabis prescription for seizures. "They implied that my medication could be illegal and that they wouldn't be able to really allow it inside. After a lengthy discussion where I was made to feel like a criminal, I had to make the decision to leave. It felt quite devastating. It felt unfair." She has MOBILITY ISSUES and SEIZURES. Staff told her she could only take her prescribed medication if she LEFT THE HOSPITAL GROUNDS. @wesstreeting this is discrimination. This is dangerous. This must end. Read the full story 👇 #MedicalCannabis #EndOurPain #NHS #PatientRights #SeizureDisorder bbc.co.uk/news/articles/…

We witnessed what happened when our son ran out of his Bedica; he nearly died from back-to-back seizures, with his oxygen levels at 72% despite full oxygen delivery and a heart rate of 218 bpm. I thought the NHS was there to heal people, not to cause their deaths!

No two patients are equal, so no two cannabis treatments will work the same. While many in the industry accept that a Dr knows best approach doesn’t always work, some advocate for stronger guidelines. Sam Ashton argues the case for the Hybrid Patient leafie.co.uk/cannabis/opini…

Patient health put at risk.

Valid Prescriptions. Denied in Hospital. When a patient lacks capacity, their prescribed medication shouldn’t stop at the hospital door. The Reality Children and adults with valid cannabis prescriptions face dangerous gaps in care when admitted to NHS hospitals: 💔 Parents trapped on wards because staff won’t administer their child’s prescribed medicine 💔 Children missing vital doses during surgery or intensive care when parents are excluded 💔 Adults with disabilities left without treatment they cannot self-administer 💔 Seizure control lost, sometimes with life-threatening consequences The Postcode Lottery Without national guidance, hospital policies vary wildly. One trust supports families fully. Another stores medication but won’t administer it. Another refuses outright. Geography shouldn’t determine whether you receive prescribed medication. The Solution Hospital staff already administer morphine and other Schedule 2 drugs to patients lacking capacity. There’s no clinical or legal reason cannabis medicines should be different. Staff want to help. They need clear national NHS guidance, legal protections, and training. What We’re Demanding In our ACMD submission, End Our Pain is calling for urgent national guidance permitting hospital staff to administer privately prescribed cannabis medicines to patients lacking capacity. This isn’t radical. It’s basic healthcare. Patients aren’t asking for special treatment. They’re asking to be treated like patients. 💚 #EndOurPain #CannabISmedicine #NHSGuidanceNeeded #MedicalCannabisAwarenessMonth

@Lara1273 I hope you get some better sleep tonight x

I got 2 minutes deep sleep last night. I don’t usually get more than 45 minutes deep sleep but 2 minutes is ridiculous and unsurprisingly I feel ridiculously tired.

Plant-based medicine is science-backed, tested for purity, and prescribed with care — not guesswork. 🌿 Evidence ensures safety, education builds trust, and research replaces stigma with understanding. #cannabISmedicine #MedCanAwareness #PatientAccess

Joanne has jumped through every bureaucratic hoop only to find it leading to yet another block in her journey to obtain her child’s medical cannabis access. @BenBoisterous has been using cannabis oils to treat his cerebral palsy clonus, and severe epilepsy since 2016, after being refused NHS access in 2014 due to not having one of two rare epilepsy conditions. The team under Professor Helen Cross informed Ben's parents that the multiple epilepsy medications were ineffective for him and that he was not a candidate for brain surgery after two evaluations at Great Ormond Street Hospital. A professor sat down with his parents and advised them to consider reducing the multiple ineffective drugs and diet and to focus on improving Ben’s quality of life. So that’s what they did! In 2018, they obtained a medical cannabis oil from Canada. After asking for a license, they were informed that the route to obtain it was through a government access panel. You can find more about that process here: gov.uk/government/pub… Assured by hospital management that their son's application, completed by his NHS neurologist, would be sent, they discovered that management never countersigned or sent it. After raising concerns, they received a reply that only acknowledged their issues without offering help. You can view their response here: drive.google.com/file/d/10oI7M8… Despite MPs raising concerns about the situation, the challenges continue. Recently, a parent came forward with an email from a hospital CEO implying he was silenced by the DHSC, which raises serious questions about transparency. You can read the email here: drive.google.com/file/d/1Oy92C9… They are now calling for a public inquiry after being informed that the DHSC holds over 6,500 emails on this subject from one individual alone in 2018, but refuse to release them. 🔴 What You Can Do: - Write to Your MP: endourpain.org/email-your-mp/ - Sign Our Petition: change.org/p/urgent-gover… - Call for a Public Inquiry: openletter.earth/structural-imp… Together, we can advocate for change and ensure that patients have access to the treatments they need. #EndOurPain #NHS #PatientAccess #CannabISmedicine #HealthcareEquality

States in Debs TV interview on YouTube 12 years ago that trials were being conducted in the U.K. to obtain the evidence so why are we still waiting for access 12 years later @wesstreeting ??? @IanByrneMP @ronniecowan

Proud to share “Breaking the Grass Ceiling” on making UK medical cannabis credible, compassionate & inclusive. Thank you Anastacia Peters, @HeidiWhitman & @EllenJardim. 🔗 dalgetyuk.co.uk/breaking-the-g… #cannabISmedicine #MedCanAwareness #PatientAccess #WomenInCannabis