Phil Kerridge

I cannot believe what I’m hearing. £66,000 has been mentioned in the video. That seems to be what’s stopping a Hospital Trust from administering a free drug for boys that don’t have a treatment. Not £66k to help one eligible child. £66k to help them all in TOTAL. These are my own comments and do not reflect the views of Duchenne UK or any other interested party. I’ve checked the annual budget for this Hospital Trust. I believe it to be £1.45 Billion or £1450,000,000. £66k as a percentage of this budget amounts to 0.005%. They cannot find 0.005% to extend & improve the lives of kids under their care because they are cost saving? In 2023/2024 it appears from the published accounts that £33,000 was spent on Hospitality. That seems more than reasonable to me, comparable to budget, but it helps put all of this into perspective. The Chief Finance Officer “It’s not our job to fund new medicines that are not NICE approved”. If you need a tuna sandwich & a chocolate muffin from the hospitality budget though, he’s your man. I know I’m being crass. I’m furious at the lack of compassion in that leaked email. I’m furious because Duchenne boys die. They ALL die from this killer condition & many die very young. As a Duchenne Community, the loss is devastating. Back in 2023, I attended 3 Duchenne funerals in 2 weeks. But, it’s not “your job”. My own son Ashley is on a clinical trial for the 3rd time. The photo below, his comments about keeping his hands working & maybe living longer… it breaks me. Just like it breaks Alex, the Dad in the video. It’s not your job Mr Chief Finance Officer. Finally a drug … a new drug … the only drug that is approved in the UK to treat Duchenne Muscular Dystrophy & they can’t find £66k which amounts to small change in the scheme of things. The drug being provided free of charge until the decision from NICE is announced, and, as Emily, a magnificent Duchenne Mum & CEO & Co Founder, Duchenne UK, states in the clip, it’s 2 of spoons of (free) medicine a day & some blood tests.