Murray’s Page

If anyone has been through ‘RESCAS’, completing this form will help us greatly.

Please help us by signing https://endourpain.org/raise-your-voice-urge-your-mp-to-sign-the-letter-to-the-prime-minister/ 🙏🏻

Raise Your Voice: Urge Your MP to Sign the Letter to the Prime Minister Join us in supporting the End Our Pain campaign, advocating for an urgent fund scheme to provide access to medicinal cannabis for children and adults with epilepsy. Ask your MP to sign the letter to the Prime Minister, urging the implementation of this vital treatment option. Together, we can make a...

Campaigners march to Downing Street in fight for medical cannabis prescriptions Families from the campaign group End Our Pain, fighting for NHS medical cannabis prescriptions, marched to Downing Street in a call for "urgent action on the crisis"

You are invited to join us at 2pm, on Wednesday 8th November, at Parliament Sq Gardens by Winston Churchill statue, to attend a peaceful walking demonstration to No 10 Downing Street regarding the non-movement of NHS funded cannabis prescriptions.

https://www.dailyrecord.co.uk/news/politics/legal-prescription-medical-cannabis-disaster-31373176.amp

You are invited to join us at 2pm, on Wednesday 8th November, at Parliament Sq Gardens by Winston Churchill statue, to attend a peaceful walking demonstration to No 10 Downing Street regarding the non-movement of NHS funded cannabis prescriptions.

Ronnie Cowan MP said: “The UK Government clearly didn't understand the problem and their idea of a solution has let down many people and sadly led to a great deal of confusion.”

Legal prescription of medical cannabis 'an unmitigated disaster', SNP MP claims EXCLUSIVE: Ronnie Cowan said the UK Government "clearly didn't understand the problem" when it allowed doctors to prescribe cannabis five years ago.

We are meeting at 2pm at Parliament Sq Gardens by Winston Churchill statue, to attend a peaceful walking demonstration to No 10 Downing Street. If you are nearby, it would be great to have your support 💜

Edinburgh boy who had 'hundreds of seizures a day' avoids them for years after medical cannabis An Edinburgh mum whose son hasn't had a seizure in over four years, after being given cannabis oil, is pushing for change with the family currently paying £1000 a month for the treatment.

If you could take 2 minutes to sign and share this, it would be greatly appreciated 🙏🏻 💜

https://www.change.org/p/urgent-government-reimbursement-scheme-for-children-accessing-medicinal-cannabis-click-to?recruiter=41021852&recruited_by_id=ce9b7540-5472-0130-7c3a-3c764e0455b2&utm_source=share_petition&utm_campaign=share_petition&utm_medium=copylink&utm_content=cl_sharecopy_36858543_en-GB%3A1&fbclid=IwAR0VnN7JaGk-kHQQcLlWC3QG-AGWxo99-QWHtJ7WOWfB94iS2yaRyCxe9Aw_aem_AWErByrIQ-_LiRROi8XbBSUn5-7z7HTHagJn2L7mNK0gokqoB2P2Hih3O08L8HHyAz4

We are all STILL having to pay privately - NHS won’t help - even after hearing many stories the same as Musas for the last 5+years! 😔

“Musa battled up to 200 life-threatening seizures a day despite trying a cocktail of pharmaceutical medications before starting a private cannabis oil prescription in 2020.

Since securing him a private cannabis oil prescription, his seizures have stopped. He’s a completely different child. He loves listening to music - especially anything with bells - and we take him out driving because he loves the car. Now, there is a personality there.”

Parents forced to pay £1,900-a-month for cannabis for children Fewer than five NHS prescriptions for unlicensed medical cannabis were given between November 2018 and July 2022, according to data that was released in January

Today marks 5 years since the government changed the law to allow children like Murray to be able to access their cannabis oil medication through the NHS.
This was due to many parents-turned-campaigners who wanted to access this life-saving medication for their child, to stop or reduce dangerous seizures.

5 years forward and we are all still paying over £1k each month.

We are going back to Parliament on 8th Nov - yet again - to try and instigate change.

An article by our American friends, AJEM American Journal of Endocannabinoid Medicine
featuring Murray and Boisterous Ben

Families Struggle to Obtain Medical Cannabis for Epileptic Children in Post-Brexit World Children with intractable epilepsy thrive on full-spectrum medical cannabis but the NHS denies access, leaving UK families no other option than to seek it out on their own.

Nearly 5 years since various parents of young epileptic children helped to change the law - and we still have no help to pay for this vital medication.

If you haven’t already done so, please sign. We need as many signatures on here as possible before November 💜

Sign the Petition Urgent Government Reimbursement Scheme for Children accessing Medicinal Cannabis

Happy birthday to Murray - 11 - wow, can’t believe it, he’s growing up too quickly!

He had a birthday party with his friends from school 🥰 at a local soft play.

We have weaned the Bedica (extra THC), due to Murray being seizure free for so long, and he’s good. We have the CBD to wean next, but will be taking that wean even slower 😊

“We call on the government to establish an urgent reimbursement scheme that provides free access to medicinal cannabis for children and young adults who require it to treat life-threatening seizures. It is crucial that the government takes immediate action to prevent further harm and potential loss of life.”

Please sign and share 🙏🏻

Sign the Petition Urgent Government Reimbursement Scheme for Children accessing Medicinal Cannabis

Please share 🙏🏻

📢 Urgent Appeal: Help Ben Receive NHS Reimbursement for His Medicinal Cannabis Medication! 🙏

Dear friends and supporters,

We are reaching out to you today with an urgent request for help. Our beloved son, Ben, is in desperate need of the NHS's reimbursement for his medicinal cannabis medication. We are sharing this heart-wrenching comparison to shed light on the critical importance of our cause.

🏖️ The first picture shows Ben, vibrant and full of life, enjoying a beautiful day at the beach. He deserves to be carefree, healthy, and happy.

🏥 The second picture portrays the harsh reality of Ben's condition when he is denied access to his life-saving medication. It captures the pain and suffering that he endures during severe seizures, which have brought him to the brink of death. It breaks our hearts to witness him go through this.

We are pleading with you to join us in our fight for Ben's well-being. By sharing this post and signing our petition, you can help raise awareness and put pressure on the government and NHS to provide the reimbursement he so desperately needs. https://www.change.org/p/urgent-government-reimbursement-scheme-for-children-accessing-medicinal-cannabis-click-to

Additionally, we urge you to write to your Member of Parliament, expressing your support for Ben's cause and urging them to take action. Together, we can make a difference and ensure that no child or individual is denied access to the medication that can save their life. https://endourpain.org/find-my-mp/

Please keep sharing this post and signing our petition to support Ben and help us bring about change. Let's rally together and show the power of our community in advocating for a fair and compassionate healthcare system.

Thank you from the bottom of our hearts for your unwavering support. Together, we can make a life-changing impact for Ben and others facing similar struggles. 🌟💙🙏

Did you know that 2 people have recently been reimbursed for their cannabis medication via a private cannabis clinic ?

4 years later and we are STILL PAYING !

It certainly feels like Murray and the rest of the children don’t matter to our government.

Please use the link to contact your MP, asking for them to support our campaign for reimbursement.

Our kids matter too!!!

Find My MP - End Our Pain Email Your MP 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 the draft. And if you haven’t done so […]

What a fantastic day, thanks to 75th Edinburgh Taxi Outing. Murray had such a great time!!

It’s been 4 years since Murray suffered a seizure. Whilst cannabis oils greatly saved his life 4 years ago, his syndrome type is one that 50% of children can grow out of. (According to Doose Syndrome NHS Specialists).

We started to reduce his THC a couple of months ago - reduced it by half so far and no seizures 😊. It’s a VERY anxious time for us - but we don’t want Murray on medication if he doesn’t need it (not to mention the £1k each month we are STILL paying!).

National Epilepsy Awareness week.

None of our children smoke or v**e cannabis. The cannabis flower is converted to oil and our children take this under the tongue (sublingual). The correct dose is very effective for most children.

I am very excited to tell everyone that I have accepted the Patient Engagement Manager role for The Jorja Emerson Centre, working with the team for the new ‘Jorja’s Dream’ Brand.

I’m very much looking forward to helping patients access flower and oil medications at a reasonable cost.

The end goal is NHS access for everyone, however at the moment the best I can do is join a team committed to helping people access medication at an affordable cost.

If you are interested, please contact me.

https://www.jorjasdream.com

Murrays mum will be on Australian radio chatting about Murray and Cannabis at 11:20 GMT

TNT Radio TNT Radio is the only 24/7 online news talk radio station dedicated to freedom globally. Listen and follow TNT Radio in our quest to make a difference.

Airtable | Everyone's app platform Airtable is a low-code platform for building collaborative apps. Customize your workflow, collaborate, and achieve ambitious outcomes. Get started for free.

*CALLING ALL EDINBURGH TAXI DRIVERS*

The Organisers need the generosity of the Edinburgh Taxi Trade to support the 75th Outing and donate their time and their taxis.

Please complete the form and the organisers will be in touch: https://airtable.com/shrYem9w0pOMkkM4b

You can also share the link with other drivers as well 😊

Murray was lucky enough to be selected last year and he had a brilliant time. Such an amazing event the taxi drivers and organisers put on for the kids 💜

Airtable | Everyone's app platform Airtable is a low-code platform for building collaborative apps. Customize your workflow, collaborate, and achieve ambitious outcomes. Get started for free.

Murray’s Story.

Epilepsy Awareness | Purple Day | Murray | Intractable Epilepsy Epilepsy Awareness | Purple Day | Murrayhttps://static.wixstatic.com/media/a3e381_ea35d8bc30ac4914853ecb8c45dbb9d1%7Emv2.png https://www.intractable.org.uk/epilepsy-awareness-purple-day-murray Intractable Epilepsy