End of life care for children and young people: the care you should expect

End of life care for children and young people: the care you should expect

This information is about making sure a child or young person who has a life-limiting condition gets the best possible care. It applies to babies, children and young people under 18 with life-limiting conditions. Although we say 'your child' throughout, children and young people may want to read this information for themselves to help them make decisions about their care. There is also a section about supporting parents and carers.

This information explains NICE's advice about end of life care for children and young people. Your care team should know what NICE has said. Talk to them if you don't think you are getting the care described here. If talking to your care team doesn't help, you can go to the local Patient Advice and Liaison Service (PALS). There is more information about PALS and how to find your local service on NHS Choices.

Why is this important for you?

The NICE advice aims to improve care by making sure that you as a family are at the centre of all decisions about your child's care. It also aims to:

  • help you plan your child's treatment and care early

  • make sure you get all the information and support you need.

It doesn't look at treatment or care for specific medical conditions – see where can I find out more? for how to get more information.