Raising the bar for children’s palliative care

Together for Short Lives has welcomed the opportunity to help shape the new quality standard for children’s palliative care, which represents another positive step forward for care and support for children with life-limiting conditions.

In our response to the National Institute for Health and Care Excellence (NICE) consultation, we have asked NICE to make sure that the new children’s palliative care quality standard reflects the views of children, young people and their families – and the professionals who support them

We submitted our response to the consultation on the NICE quality standard for ‘End of life care for infants, children and young people’ after consulting with our members to find out what they think about the standard and what they think is missing. NICE is the body which provides national guidance and advice to improve health and social care.

In our submission, we call on NICE to make sure that:

  • Local data on progress made implementing the standard is collated nationally.
  • Palliative care begins at the point that a life-limiting condition is suspected during pregnancy.
  • The role of the ‘named medical specialist’ who coordinates a child’s care is clarified.
  • Emotional and psychological support is offered to the whole family, including the siblings of a child with a life-limiting condition.
  • The availability of short breaks is used as a measure of high quality children’s palliative care.

NICE will now consider all the comments it has received on the draft quality standard before publishing the final quality standard in October 2017.

Commenting on the draft standard, Chief Executive of Together for Short Lives Barbara Gelb OBE said:

“This new quality standard has the potential to dramatically improve the quality of palliative care received by children, young people and their families. We’re pleased that NICE has recognised the importance of crucial parts of children’s palliative care such as symptom management and emotional and psychological support.

We are tremendously grateful to all of the young people, families and professionals who got in touch with us to share their views on the draft quality standard to help us shape our response to the consultation. We look forward to the publication of the final standard in the hope that NICE have taken these comments on board.”

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