Terminally ill children should have access to around-the-clock homecare, according to guidance issued for England yesterday.
The National Institute for Health and Care Excellence (NICE) has published a draft ‘quality standard’ which includes the recommendation for 24-hour access to specialist medical support and advice for families who are caring for terminally ill children at home.
It states: "Stakeholders commented on the importance of 24/7 nursing and specialist support for infants, children and young people receiving end of life care at home. There remains high variation in the availability of this across the UK. Stakeholders suggested that this prevents infants, children and young people from being offered choices related to preferred places of care and death at the end of their lives."
Professor Gillian Leng, deputy chief executive at NICE, said: "A hospital is not always the best place for a dying child. Sometimes being cared for at home, in familiar surroundings with the people they love beside them can be much more beneficial.
"We need to make sure families have the support they need. Children should be able to access the right care in the right place for them. The final moments we spend we loved ones can form some of the strongest memories. We have to get it right."
The draft ‘End of life care for infants, children and young people’ quality standard was added to the NICE website yesterday (18 April). It is aimed at commissioners, service providers, health, public health and social care practitioners, and the public.
Further suggested ‘quality improvement areas’ include better advance care planning (requested by the Royal College of General Practitioners, among other stakeholders), better emotional and psychological support for the child and the family, better bereavement support, and direct access to an experienced consultant.
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