Charles’ story: “They were a lifeline. Any time, day or night. They were there.”
Charles was 11 when his family received the devastating news that he had a terminal brain tumour. He was given a 10% chance of survival in the first year and 1% for any further years. Charles’ mum Jennie realised then, that time with their little boy would be very short.
We cared for Charles at home, where he loved to be. But this wouldn’t have been possible without the support of our local NHS Children’s Palliative Care Team. They were always there, whenever we needed them
Charles's mum, Jennie.
What it means to have 24/7 palliative support?
Charles’ family didn’t only appreciate all the practical support that the palliative care team provided but they importantly gave them emotional support when the family needed it.
Charles’ mum Jennie explained, “As well as practical support (for example fitting a stair robot so Charles could sleep in his own room upstairs or helping with a hospital bed), they provided us with a tremendous amount of emotional support. We would often find ourselves chatting on the doorstep when I showed them out. They helped me to prepare for Charles’ questions about whether we could cure his cancer because I didn’t know how to tell him he wouldn’t get better.”
When the family needed the palliative team, they were there.
“Before he died, he was in hospital for a short spell but was finding it so hard to relax and sleep there, he was desperate to get home. The Children’s Palliative Care Team made this all possible. He arrived home and slept peacefully again. Charles died that night, in the comfort of his own bed.”
Other families like Charles’ need your help, so every child can get 24/7 end of life care in England.
Worryingly, our new report highlights that not every family is getting the support they need. Our interactive online maps show that the extent to which seriously ill children and their families can access services which achieve these standards is very patchy and depends on where they live.
We are particularly concerned about children and families’ access to end of life care at home, 24 hours a day, seven days a week, supported by nurses and senior consultants who have the knowledge and experience to meet their often complex needs.
We need your to help. Use our maps to find out the situation in your area. Sign our open letter to the government to ask them to take action.