NICE draft sets the standard for children’s palliative care

Together for Short Lives has welcomed the new draft quality standard on providing palliative care to seriously ill babies, children and young people which the National Institute for Health and Clinical Excellence (NICE) has published for consultation.

The new standard, entitled End of Life Care for Infants, Children and Young People, aims to help all those who plan, fund or provide children’s palliative care to: 

  • identify gaps and areas for improvement
  • measure the quality of care
  • understand how to improve care
  • demonstrate that they provide quality care.

The new document sets the standard for the palliative care 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. The draft quality standard consists of six quality statements which set out that: 

  1. Children and their parents or carers should be involved in developing an advance care plan.
  2. Children should have a named medical specialist who coordinates their care.
  3. Children should be helped to access emotional and psychological support.
  4. Children approaching the end of life should be assessed for unresolved distressing symptoms.
  5. Parents or carers should be offered bereavement support before and after their child has died.
  6. Children should have access to 24-hour paediatric nursing care and advice from a consultant.

Welcoming the quality standard, Chief Executive of Together for Short Lives Barbara Gelb OBE said:

“This new quality standard will be another helpful tool from NICE for professionals delivering children’s palliative care and for commissioners who plan services for their local area. The government’s response to the Review of Choice at End of Life stated that commissioners in England ‘must prioritise children's palliative care in their strategic planning’. Sadly, the reality is that too many local areas fail to plan and fund the lifeline palliative care that seriously ill children and young people need.

“Combined with the NICE clinical guideline published last year, this new quality standard should make a compelling case to local areas. 24/7 access to services in communities should be an integral part of palliative and end of life care for children. Only by commissioning and providing it can local areas support families to choose how and where their care is delivered.

“If implemented, the standard should bring about the very best quality of life and quality of end of life for children with life-limiting conditions.

NICE is consulting registered stakeholders on the draft quality standard until Tuesday 16 May. If you are not already a registered stakeholder, you can register here. Together for Short Lives’ members, including families, services and professionals, have an opportunity to shape our submission to the consultation; if you are not a member, find out how to join us here. Families can also let us know their thoughts through our Facebook page.


  • Hillary Vallé 19 April 2017, 13:24

    Point 3 should read children, parents/carers and siblings. As plans bereaved mum of 17 years, I know that psychological help at this time is imperative. The loss of a child/young person, or sibling, impacts on the rest of your life.

  • Yvonne Dandy 19 April 2017, 20:22

    From beginning to end, myself and daughter Olivia, had all this and more in 2005! Shocked to see it is not standard practice 12 years on!! Alder Hey, consultant Andrew Curran and teams of nurses, physio, OT, Speech Therapy, dieticians, social worker and more, both at home and when hospitalised. Saddened to see the support isn't consistent nationwide.

  • colleen m cherry ms ccls 21 April 2017, 19:45

    We profess to be a country who supports children but we have not done so. This is do needed. Having been privileged to provide support to ill children and their siblings, I have experienced the enormous effect that in -home care, including psychosocial, can have on the well being of the child patient and their family.

  • Patrick McKenna 26 April 2017, 15:42

    Dear Hillary, Yvonne and Colleen

    Thank you for your feedback. We will make sure that this is reflected in our response to the quality standard consultation.

    Many thanks


    Public affairs and policy officer
    Together for Short Lives

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