A desperate mum has launched a new petition calling for NHS access to medical cannabis, which she believes could save her son.
Sarah Sugden, a 29-year-old single mum to Isaac, aged three, has launched a petition in a desperate attempt to access medical cannabis for him.
Isaac was diagnosed with the rare gene mutation MED12 in 2020 and is the only person in the UK known to have his specific variation.
MED12-related disorders primarily affect boys and can cause epilepsy alongside developmental delay, dysmorphic features, and behavioral problems.
Isaac currently experiences up to 80 life-threatening seizures a day, and his doctors are said to have warned Sarah that he may not live longer than 18 months without intervention.
He is now on his 13th conventional anti-epileptic and has tried alternative options such as the ketogenic diet.
Sarah says her son is “trapped in his head day after day” and doesn’t respond to anything.
Having done her research and spoken with many other parents of children with similar conditions, Sarah is confident that medical cannabis could help him. However, despite it being legalized in 2018, she cannot access the medicine either privately or through the NHS.
Only three prescriptions have been issued through the NHS in almost four years, and the only remaining pediatric prescriber in the private sector has now closed their books due to demand.
Around 80 children with refractory epilepsy currently have private prescriptions for whole-plant cannabis, and many of these patients have seen considerable improvements in their overall seizure reduction and quality of life.
Sarah told Cannabis Health earlier this year that she is considering traveling overseas, feeling that it is her only option to access it for Isaac.
“My gut tells me it’s what he needs,” she said.
“Nothing else has worked, and I need to know I have tried everything.
“It would be great if it stopped the seizures, but it’s about giving him a better quality of life and enabling him to be a bit more cognitively aware because, at the moment, he’s just existing; he doesn’t live.”
Sarah’s petition, which has several hundred signatures already, states: “We are at breaking point. We want the chance to try medical cannabis, which has been life-transforming for other children with similar extreme forms of epilepsy.
“We need the system to change. How can a drug that is prescribed to 3 children on the NHS not be accessible to all who need it, and how can private clinics be blocked from accepting new patients?
She adds: “I have started this petition to say my child matters; his health and happiness matter. This medicine can’t just be accessible to some and not to all.
Disclaimer: https://cannabishealthnews.co.uk/2022/04/14/mum-petitions-for-medical-cannabis-on-the-nhs-in-bid-to-save-her-son
