30/01/2025
Hi everyone, it’s been quite some time since I posted about Murray. I suppose I didn’t want to tempt fate !
Glad to say it’s very good news! 😊
I took his case to the Scottish Public Ombudsman and over a couple of long years later, the end result was that we were to wean Murray off the oils and if he had a seizure, they would look at his case again for NHS funding. In view of this, the decision was made to wean his c@nnabis oils.
First we weaned the extra thc (Bedica) and then the Bedrolite (CBD/THC). We did this very slowly - it took well over a couple of years!
Murray is now taking no medication!
Luckily he is still doing fantastic, he’s now 12 and is enjoying starting high school. He hasn’t had any c@nnabis oils since June 2024 and he’s still seizure free.
(Kids can grow out Doose syndrome depending on how it starts, however it didn’t look likely for Murray at that time!)
C@nnabis oils absolutely helped reduce the severity of the seizures. We saw it happen right in front of us! Both CBD and THC, along with all the other cannabinoids and terpenes etc in the oil, helped Murray massively.
Thank goodness I decided to “break the law” and “smuggle” the oils from Holland to his hospital bed! I was given no choice and no help from the NHS trust! He possibly wouldn’t be as well as he is today!
I have always tried to shield Murray from this and he has no idea about the hassle involved in getting him this medication and everything that happened along the way.
It’s been over 6 years since the law was changed by Sajid Javid “to help our children”, yet 6 years later ‘lucky’ families are still having to pay vast amounts of money each month (up to £2k and more if child is now an adult!).
Other ‘unlucky’ families still have to smuggle this medication from Holland, or go to “black market dealers” as there is no other option for children suffering seizures. There are no private specialists available to prescribe, as the one private neurologist closed his books years ago due to the high number of children under his (private) care.
There are no paediatric doctors within the NHS prescribing c@nnabis oils. There are still only 3 children receiving NHS funding and have been for the last 6 years (approx).
Nothing has been achieved to help the children of the families who actually campaigned for the change in law! There is, however, yet another debate in Westminster Hall today to discuss this. You can view this here from 13:30: https://search.app/kUvbpJ1j7JKWASraA
We can only hope that this debate sparks the change needed for the children that will benefit from being prescribed c@nnabis oils!
(First photo Early 2019 before getting the cannabis oils. Bottom photo May 2019 after a couple of months of receiving the oils. Right photo is recent).
