NICE guidance must reflect the views of children and families

Together for Short Lives has called on the National Institute for Health and Care Excellence (NICE) to listen to the concerns of families and professionals and improve new guidance on children’s palliative care. The guideline, ‘End of life care for infants, children and young people: planning and management’, aims to set out the support and care that these children – and their families – need.

Together for Short Lives’ response to the NICE consultation welcomes the focus on placing the child and those closest to them at the centre of the decision-making process for their care. However, it also calls on NICE to make improvements in several areas, including:

  • Clarity over whether the guidance applies from diagnosis or only in the final stages of a child’s life
  • The needs of siblings and the support that should be made available to them
  • Choice - supporting families to make decisions about their child’s care and end of life but also giving them the choice not to engage in this way if it makes them uncomfortable or uneasy.
  • The importance of smooth transitions for young people transitioning to adult services
  • Support for professionals to attend care planning meetings with other professionals involved in a child’s care
  • Sensitivity around when parents will be able to discuss bereavement support

Our submission is the result of extensive consultation with our members and we are grateful to all of the families and professionals who have contributed their thoughts and comments via social media, email, telephone and teleconferences. The response has been overwhelming and serves to show what a crucial document this is for families and professionals alike.

Commenting on the submission, Shaun Walsh, Director of External Relations at Together for Short Lives, said:

“The new guidance is a step in the right direction in securing the best support for children and young people, and their families, with life-limiting and life-shortening conditions, but there is still much work to be done before it is finalised in December.

Families and professionals have told us that they welcome the focus of the guidance in putting children and their parents at the heart of the decision making process and offering them choice over their care and preferred place of death. However, we and they are disappointed that the document doesn’t fully address support for siblings and the wider family when a child is dying or has died. We are proposing changes so the guidance includes the wider family and is carefully worded to ensure that choice does not force families into decisions they are not ready or comfortable to make. 

Transition should also be a key area of focus to ensure that palliative care is delivered in a way that meets the age and developmental needs of young people. The number of young people who need support is growing and we must ensure they are not forgotten. The emphasis on end of life care is also disappointing as it risks reinforcing the lack of understanding of children’s palliative care, which begins at the time of the diagnosis and continues throughout the child’s life, death and beyond.

We welcome NICE’s consultation and the important opportunity it provides for children young people and their families, however, if it is to be effective it must grasp the opportunity to focus on holistic palliative care, which includes the whole family.”


  • Natalie 18 August 2016, 15:19

    A positive step forward for children who need end of life care and their families.

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