Information about your child’s care
Every child with a life-limiting or life-threatening condition is unique and every family’s experience caring for them will be different. These pages give you information and advice that can be helpful at different times following your child’s diagnosis.
Quick links
Diagnosis or recognition
There is so much to think about when you have found out that your child is seriously ill that it is difficult to know where to start. This page suggests some topics to think about.
Caring for your baby when the future is uncertain
This section provides you with information and sources of support when there is uncertainty about your baby’s future and they may need palliative care.
Ongoing care
It is important that your child's needs, and those of your whole family, are assessed regularly so that the right support is put in place. We've developed a checklist here to help you and your child feel supported at every stage of your journey.
Aids and equipment
If your child would benefit from specialist aids or equipment, this page provides details of some organisations and government schemes that can help.
Transition to adult care
As a child with a life-limiting or life-threatening condition enters their teens and early adulthood, they will move from children’s services to adult services. Find out more about the transition process and how your child can be supported.
Making critical care choices for your child
As your child approaches the end of their life, important discussions and decisions will need to be made. This page will give you information, signposts and prompts to help you make informed choices and decisions about treatment and critical care choices for your child.
Care planning in advance
It is very difficult to make rational and informed decisions during a crisis. An Advance Care Plan can help ensure that your child’s care runs smoothly and in accordance with your wishes if/when your child’s condition deteriorates.
End of life care
Thinking about the end of your child’s life is extremely difficult, and requires a lot of emotional strength. Planning ahead of your child's death can help you make informed choices when the time comes.
Family Resources
Our family resources are created to support anyone who is caring for, or has cared for, a child with a life-limiting or life-threatening condition. They are free to download, but many are also available in hard copy should you need them.