National Institute for Health and Clinical Excellence (NICE)
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End of life care must be for the whole family not just the dying child, says NICE in new guidance

Families with dying children must be put at the heart of care, new guidance from NICE (The National Institute for Health and Care Excellence) says.

Dr David Vickers, consultant at Cambridgeshire Community Services NHS Trust yesterday said:

“Providing care for a dying child can be an enormous challenge. It can place a substantial strain on the family”

We advise people working in health and social care to make sure mothers and fathers, brothers and sisters, get the practical and emotional support they need to care for a family member at the end of life.

Dr Emily Harrop, consultant at Helen and Douglas house hospice

Around 40,000 children and young people are estimated to be terminally ill in England. They can have complex needs and can require 24-hour care.

Parents, and often siblings, become carers as Dr David Vickers, consultant paediatrician chair of the NICE guideline committee explains: 

"Mothers and fathers can be forced into a medical role to provide the care their son or daughter needs. It is important for us to recognise this and offer help to alleviate the pressure."

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