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NICE standards “a milestone” for CPC

News and comment

Together for Short Lives has welcomed an important new set of standards which describe what high quality palliative care is for babies, children and young people with life-limiting and life-threatening conditions.

The new standard on ‘End of Life Care for Infants, Children and Young People’ comprises six quality statements:

  1. Children with life-limiting conditions and their parents or carers should be involved in developing an advance care plan (ACP).
  2. Children should have a named medical specialist who leads and coordinates their care.
  3. Children and their parents or carers should be given information about emotional and psychological support, including how to access it.
  4. Children should be cared for by a multidisciplinary team that includes members of a specialist children’s palliative care team.
    Parents or carers of children approaching the end of life should be offered support for grief and loss, including after their child has died.
  5. Children approaching the end of life and being cared for at home should have 24-hour access to both children’s nursing care and advice from a consultant in children’s palliative care.
  6. The new quality standard applies in England and Wales. While it is not mandatory for planners, funders and providers of health and social care to implement, NICE states that they should aim to achieve the quality standard in their local context.

Together for Short Lives was a registered NICE stakeholder and provided a voice for our members in offering feedback and suggesting improvements when NICE consulted on the draft standard earlier in 2017. We are pleased that NICE has reflected the important role of community children’s nurses in the final version, in addition to the importance of advance care planning before a baby is born if a life-limiting condition is diagnosed during pregnancy.

“I wholeheartedly welcome the new quality standard, which is an important milestone in children’s palliative care,”says Barbara Gelb OBE, Chief Executive of Together for Short Lives. “NICE have developed an ambitious set of quality statements which, if implemented in full, would transform the lives of more than 40,000 babies, children and young people with life-limiting and life-threatening conditions and their families.

“These standards, combined with the NICE clinical guideline, the government’s end of life care choice commitment for children, the Ambitions for Palliative and End of Life Care framework and the Welsh Government’s End of Life Delivery Plan, comprise a compelling suite of guidance which planners, funders and providers of care must not ignore. I am grateful to NICE for the opportunity that Together for Short Lives has had to shape and contribute to the important work to develop them.”


While hailing the exciting opportunity that the quality standards offer, Together for Short Lives has also delivered a sobering reality-check to emphasise how much work is needed to realise these important quality statements. One in six (17%) CCGs do not commission bereavement support and only 61% of CCGs can offer this support out of hours or at weekends.

Barbara Gelb OBE continues: “Sadly, whether or not these vulnerable children and their families can access palliative care which meets the standard set out by NICE depends largely on where they live. This is simply unacceptable. It is vital that commissioners and providers of health and social care now work together to achieve these standards for every child who needs palliative care, regardless of where they live. Together for Short Lives stands ready to help them do so. The prize on offer is better outcomes for children and families achieved in a more cost-effective way for the NHS and local authorities.”

Dr Emily Harrop, Consultant in Paediatric Palliative Care has blogged for us about the development of the Quality Standard. Read her blog here.

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