But Rennie Grove Hospice Care’s team of dedicated children’s nurses help shoulder the burden and, literally, ease the pain.
The specialist nurses are available 24/7 for local babies, children and young people up to the age of 19 and their families.
Daily, across Herts and Bucks, they visit families and patients in homes, schools and hospitals to shape care tailored to each of their needs.
The aim is to ensure that each young patient is able to fulfil their potential and enjoy the best quality of life possible, however short that life may be.
Children’s Hospice at Home Service nurse Tina Bodell said: “As well as providing clinical support to our children, we try to provide holistic care to the whole family too.
“This might include acting as the link between all health and social care professionals involved in their child’s care; making sure parents’, siblings’ and carers’ needs are looked after and working alongside them to deliver care to their child.”
The range of complex conditions and tasks tackled by Rennie Grove’s children’s nurses is vast and, to illustrate this, Tina has written A Day in the Life of a Children’s Hospice at Home Nurse on the Rennie Grove website.
In it, she says: “Our families trust us completely as highly skilled clinicians who know all about the complex needs of their child. They feel reassured that they have access to a member of the team at any time of the day or night. This is crucial when you are caring for a very sick child at home.”
To read Tina’s Day in the Life article, see www.renniegrove.org/childrensnurse