It is estimated that more than 40,000 children and young people in England are living with a life-limiting condition (where there is no reasonable hope of cure).
The NGA were commissioned by NICE to develop guidance to improve end of life care for babies, children and young people.
The devastating experience of losing a child is unimaginable to most people. The aim of the guideline is to improve the care provided during this time which could make a huge difference (by feeling comforted and supported) to all people involved. The guideline emphasises that the whole family and people who are important to the child or young person need care and recommendations have been drawn up to promote this happening.
Other recommendations relate to Advance Care Planning as well as social, practical, emotional and religious support and the management of distressing symptoms. Enabling children and young people to be cared for or to die at home is also recommended if the family wish this to happen.
The NGA technical team supported the development of this guideline with their expertise in project management, systematic reviewing, information science and health economics.
David Vickers (Chair of the Guideline Committee) wrote ‘I have been a consultant paediatrician for 25 years this year, and I think this is the most rewarding thing I have ever done (apart from of course the clinical privilege of meeting and supporting children and their families)’ a view that was echoed by Emily Harrop (Deputy Chair of the Guideline Committee) ‘I absolutely agree that this has been one of the most significant and intellectually stimulating projects of my professional life’.
During guideline development parents of children with a life-limiting condition were part of the Committee who wrote the recommendations. A focus group was run with children who have a life-limiting condition to ensure that their voices were heard.
- View the full guideline: End of life care for infants, children and young people with life-limiting conditions: planning and management - NICE guideline [NG61]
- NICE news article: "End of life care must be for the whole family not just the dying child"