Short Lives Can’t Wait

Seriously ill children and their families aren’t getting the care they need, because of where they live. Governments across the UK need to act now, because children like Jaxson cannot wait any longer.

Jaxson’s dad Jim is writing to the Prime Minister and let his government know that every life, no matter how short it may be, deserves the best care. Please join us and add your name to Jim’s letter below.

Dear Prime Minister

My name is Jim and I have a son, Jaxson, who is 17 months old. He has a life-limiting congenital heart condition and a rare genetic disorder which means that he is likely to die during his childhood.

We were told in September last year that curative treatment would stop, and that he would be referred for children’s palliative care. The truth is, we just don’t know how long we will have with Jaxson.

It could be tomorrow, or he could live to 15. There is absolutely no way of knowing. But instead of making every day the best it can be for Jaxson, I am constantly phoning, emailing and going online to get help because we are not getting the support we need. If it weren’t for our local children’s hospice, Demelza, we would be on our own.

Things just don’t match up. There is a disconnect between what should be done, and what is being done. Services are not joining up around us. We still haven’t had a visit from a community children’s nurse. I can’t even find the vital equipment I need to administer Jaxson’s oral medicine.

It is a constant battle, but it shouldn’t be. What’s really shocking is that we are not alone. There are thousands of families like ours across the UK who cannot access the palliative and end of life care we need. Just because of where we live.

Whether or not Jaxson – and other children like him – can access lifeline 24/7 palliative and end of life care in hospital, at home or in a children’s hospice should depend on their needs, not their postcode.

Please act now by fixing the huge gaps in workforce and funding. Please hold those who plan and fund children’s palliative care to account. Please don’t leave us to struggle through our child’s short life alone. Time is short for seriously ill children like Jaxson. They cannot wait any longer.

Yours sincerely

Jim Cirkel