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Together for Short Lives have issued a statement concerning the new guideline on children’s palliative care published this week by the National Institute for Health and Care Excellence (NICE), they say:

Despite the title, the new ‘End of Life Care for Infants, Children and Young People: Planning and Management’ guideline describes the care and support that children with life-limiting conditions – and their families – should expect to receive from the point at which their needs are recognised until the end of their lives.

Together for Short Lives has welcomed the new guideline. Its recommendations include:

  • the child and their family should play an active role in discussions about their care;
  • where possible, the child should receive palliative care, including end of life care, in the place they choose;
  • children with life-shortening conditions should be cared for by a multidisciplinary team who meet regularly to discuss the child’s care.

 You can read our full statement on the new guideline here.

Together for Short Lives was a stakeholder in the guideline development process – we worked with Dr Jan Aldridge from Martin House and Dr Jo Taylor from the University of York to run three focus groups across England with children and young people with life-limiting and life-threatening conditions and we were delighted that the views of young people were listened to so carefully. 

We are very grateful to all those who helped to shape our submission to the consultation by giving us your views on the draft guidelines. The published guideline contains numerous changes brought about by our submission and this great success is down to you. This demonstrates the value of us working together collaboratively through consultations to influence policy.

Our original submission to the consultation is available here. We have also prepared a paper showing which of the changes called for in our consultation submission were amended in the final guideline, available here.

If you have any queries regarding the new guideline, please contact Shaun Walsh, Director of External Relations (; James Cooper, Public Affairs and Policy Manager (; or Patrick McKenna, Public Affairs and Policy Officer (

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