Alfie Dingley will continue to get access to cannabis medicine – after having his licence revoked – thanks to an intervention by Professor Mike Barnes.
The family’s long fight contributed to the legalisation of the use of cannabis medicine to treat epilepsy in the UK, which came into effect on 1 November. However, that law change saw Alfie’s temporary licence lapse, which was secured through a temporary ‘expert panel’ set up by the Home Office, leaving him at the mercy of strict guidelines set for prescribing cannabis.
Thankfully Alfie’s supply has now been secured. Barnes played a leading role for Alfie’s licence application from the ‘expert panel’ before the law change came into effect, and his intervention with NHS England now has made the difference.
Alfie’s mother Hannah Deacon said in October that since he had received his licence in July he had been seizure-free and “doing amazingly well”.
In an update in a Facebook video post, she thanked Barnes and said that she was now a lot happier, but added: “I am very mindful of the fact this doesn’t change anything for anyone else. I get to enjoy my son who is very well but the 17 families I help and many others are still suffering.
“Everyone I have spoken to says they have been told no and it breaks my heart to know this medication could help children who are seizing every day.
“It’s not good enough, I won’t accept it and we will not allow this to happen. We fight back and carry on, I assure you [campaign group] End Our Pain is working hard to make our voices heard I won’t stop doing what I’m doing until that happens. We will fight on.”
Hannah has launched a petition against the refusal of prescriptions for medical cannabis which has gained over 400,000 signatures in a week, with 500,000 the target.
