Palliative care for children and young people with life-limiting conditions is an active and holistic approach to care, embracing physical, emotional, social and spiritual elements. 

A “life-limiting condition” is one for which, sadly, there is no cure or treatment that can keep the person alive. 

The goal of palliative care is to provide comfort and a good quality of life, for however long it lasts, for both the child and their family.

Many people will be part of discussions regarding palliative care but parents and the treating clinical team will always be included. With your permission, or at your suggestion, other relevant people may be invited to these meetings including extended family, social workers and pastoral care, bedside nursing staff and other specialists that have been involved in your baby’s treatment and care. Each person will be there to respectfully support you through this process.

Where will palliative care be provided?

In many cases palliative care will be provided on Butterfly Ward. Where possible, you will be offered a private space where you may stay overnight with your baby.

Other options that may be considered include moving to a hospital or specialised community centre closer to home, or even your home itself with the support of a dedicated palliative care team.