The National Institute for Health and Care Excellence (NICE) have published standards on end of life care for infants, children and young people (from birth to 18 years) with a life-limiting condition describing high-quality care in priority areas for improvement. These standards are reviewed each year and updated if needed.
NICE quality standards undergo a rigorous process of development, consultation and review before publication. The standards are endorsed by NHS England and supported by numerous organisations within the United Kingdom, including the Royal College of General Practitioners, the Royal College of Nursing and the Royal College of Physicians.
These latest NICE Quality standards, entitled End of life care for infants, children and young people [QS160] comprise six quality statements, these being:
- Children with life-limiting conditions and their parents or carers should be involved in developing an advance care plan (ACP).
- Children should have a named medical specialist who leads and coordinates their care.
- Children and their parents or carers should be given information about emotional and psychological support, including how to access it.
- 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.
- 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.
Together for Short Lives, the national coordinating body for children’s palliative care in the United Kingdom report on the guidelines on their website that as a registered NICE stakeholder providing a voice for their members on the draft standard they 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.”
Speaking of the publication,Together for Short Lives Chief Executive, Barbara Gelb OBE, says, ” I wholeheartedly welcome the new quality standard, which is an important milestone in children’s palliative care. 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.”
The NICE Guidelines can be downloaded free from the NICE website.