Before starting the #abcofautism I had a plan of the topics I wanted to cover each day but several times already I have gone off-piste as other subjects come to the forefront of my mind and today is one of them. And today’s post is thankfully nothing to do with us.
I was watching breakfast news earlier today and a story caught my attention that has been playing on my mind all morning. A young lad called William Verden requires a life-saving kidney transplant due to a rare kidney disease he has. Without a transplant he has less than a year to live.
So far this is unfortunately nothing we haven’t heard before. Except that in this case William’s family have had to fight the hospital trust in court in order for them to agree to the transplant assuming a donor can be found. The reason they would not agree to the operation appears to be because William has Autism and ADHD. “They could not agree to a transplant because he would suffer psychological and physical harm from post-operation sedation and ventilation to prevent him pulling out lines and catheters.”
Let that sink in for a moment. A hospital was willing to effectively put a death sentence on a 17 year old rather than risk him coming to harm post-op due to his autism and ADHD.
I cannot imagine what that poor family have and continue to go through. Each element of this story on its own would break many people but bring it all together and… wow.
It is well known that the families of children with autism become fighters. You have to fight bureaucracy, authority and stigma every single day just to get for your child what we should all take for granted. Every single time there is a hurdle to jump, process to beat and people to convince. But I naively never imagined you would have to fight the NHS to get them to give your child life-saving surgery because of their learning disability. Maybe they just didn’t clap hard enough…
You can read more on this story on the website of the Verden family’s solicitor Irwin Mitchell here