Information for the public

Choosing where your child will be cared for

Choosing where your child will be cared for

The care team should talk with you and your child about where you want them to be cared for and where you both want to be when they die. Together you should discuss your wishes, what is available in your area and what is safe and practical. The care team should write what you have agreed in your child's care plan and should support your choices.

If your child will need to be transferred, you'll need to plan how and when this will happen and who will take over their care. There may be a rapid transfer service in your area that can help if your child's condition suddenly worsens. This means they can be moved quickly to the place you have agreed. But you might need to think about whether it is in their best interest to move them – your team should help you decide what is best for your child.

What if something changes?

Sometimes things change. You might change your mind about your plans or the available options might change – if this happens the care team should help you to think about a new plan. They should also discuss with you any uncertainties in your child's condition that might affect your plans.

Can my child have care at home?

If you choose to care for your child at home, you should be fully supported to do this. You should be able to have home visits from paediatric nurses (who care for children) when you need help, at any time of the day or night. You should also be offered:

  • advice whenever you need it (this might be over the phone) from a doctor specialising in palliative care

  • home visits from a palliative care professional to manage your child's symptoms

  • practical support, for example equipment to give oxygen and medicines to your child

  • medicines to store at home (and training in how to store them) so that if your child develops certain symptoms these can be treated quickly (called anticipatory prescribing).

Questions you or your child could ask

  • If I want my child to have care at home does it affect what treatments they can have?

  • How will having care at home affect siblings and other family members?

  • Can we change our mind if we struggle to manage at home?

  • Who should I speak to about any concerns if my child is cared for at home?

  • What happens if our child's condition changes suddenly?

  • Who will be there to help us if our child dies at home?