Date published: 05 July 2016 by Anna Jackson

Rainbow Trust Children’s Charity welcomes the release of important draft guidance setting out what care and support should be provided to terminally ill children.

The NICE (National Institute for Health and Care Excellence) guideline looks at a wide range of issues including where the best place to die might be, and how to manage a child’s pain and symptoms. It is written for providers of care, as well as for the bodies which plan and fund child palliative care.
Research suggests there are an estimated 40,000 children and young people in England living with life-limiting conditions, and numbers are rising because of medical advances which enable more children to live longer. Understanding their needs and how support and care should be provided at the end of life is vital.
The guideline suggests that children, young people and their parents or carers should be offered emotional and psychological support to help them cope with the situation. The use of music, art and pictures to help children explore their feelings is also highlighted.

Anne Harris, Rainbow Trust Director of Care, said:

‘This guideline will set a critically important benchmark for what care and support should be provided to children and their families, and how that care is delivered. What is helpful is that the draft recognises both the need for compassionate care for the whole family, and that children have different needs to those of adults at the end of life.
Working with parents, we will be scrutinising the draft guideline carefully to understand what it might mean for the children and families that Rainbow Trust supports and we will be submitting a response to the consultation in the weeks ahead. We hope that the final version, due out in December, will underpin a much needed step forward in the provision of child palliative care.’

Read a summary of the guideline’s recommendations here.