Exhausted from multiple seizures, my child can’t even rest and recover. As soon as she nods off the tonic clusters start and wake her 💔 Rishi Sunak Steve Barclay BBC News (UK) Make advanced cannabis available for Esmé via the NHS NOW please 🙏 don’t leave her to suffer any longer

It’s wonderful to see this taking shape. #Epilepsy is one of the most common neurological conditions, yet remains one of the most intractable and untreatable

🚨 Urgent! Our son Ben suffered a severe eye injury due to hundreds of seizures caused by running out of his full extract cannabis. Lack of reliable access to medication is a national scandal. Let's raise awareness and demand change! 💔💪 #AccessToMedication #HealthcareRights

⁦NHS England⁩ ⁦Rishi Sunak⁩ ⁦Steve Barclay⁩ children are still suffering. When are you going to act?

We, as a charity dedicated to supporting individuals with intractable epilepsy, want to address an urgent matter that affects the lives of children and young adults. 💜 This deeply saddens us 😔 dailymail.co.uk/news/article-1…

Bens life was at risk so I did what any mother would do, I kept him safe. 💔 I had to go back to this life after five years. UK Prime Minister have failed to help our children and turned law abiding parents into drug smugglers. mol.im/a/12660271 via Mail Online

Medical Cannabis Awareness Week #MCAW23 is just around the corner, and this year, we celebrate five years since the legalisation of medical cannabis in the UK. Find all the details and ways to get involved as a Supporter, Organisation and Patient at mcaweek.co.uk

Five years and our families have seen little to no progress in accessing advanced medical cannabis medicines. As a growing community of families impacted, we are calling on the government to support initiatives we'll be presenting to them. #savetheunicorn

🌱 2/ I hear from those who helped make it happen: “It is sad and ironic that the law changed due to the stories of children and yet they are not benefiting from this change” Hannah Deacon

🌱 3/ And those who continue to fight Carly Ashton “The law changed before Esme was born, she should have been born into a world where children with epilepsy could be treated with this medication. It’s a matter of life & death.”

🌱4/ read the full story 👇 cannabishealthnews.co.uk/2023/11/01/fiv…

The Unicorns are coming to Parliament! Can't wait to meet up with the other unicorns tomorrow. And if you can't make it yourself, there's still time to email your MP and ask them to meet kids like me in the River Room at 2pm Bring on the unicorns! 🦄🦄🦄🦄🦄

We're here in London battling the weather to raise awareness five years on from medical cannabis being available to prescribe. Children and their families are forgotten. Please ⁦UK Prime Minister⁩ it's time you sort this failed policy! #westandwithyou ⁦MedCan Family Foundation⁩

The unicorns have arrived at Millbank #SaveTheUnicorn These children need urgent action to get the medication they need #epilepsy

Just come from Millbank where our unicorn’s families have been interviewed Next stop, Parliament to explain to MPs the issues facing children and young people in accessing advanced cannabis-based #epilepsy treatments

Coverage on @ITVNews of the @MedCanFamily SaveTheUnicorns march to parliament today. Well spoken by Hannah Deacon 👏 ITV: "We've asked the government for a response, we've not had one yet." Intractable Epilepsy @IAmBillyUK Boisterous Ben @KarenMurrayGray MedCannKids Research

The government changed the law to allow access to these medicines and the reality is that the policy has failed, the funding is not available to doctors. We are asking them to clarify that pathway so that doctors, when they do want to prescribe, can. bbc.com/news/uk-englan…

Innovative forms of evidence can be utilised in demonstrating the safety and efficacy of medicines, especially in rare diseases. So many children will continue to suffer until governing bodies begin to accept and review this. #westandwithyou #savetheunicorn

medcan-foundation.emailyourmp.uk

🙌🥰shout out to all the parents with complex kids