24-hour access to specialist care at home for terminally ill children

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England has 40,000 terminally ill children There are 40,000 terminally ill children in England

Terminally ill children should have 24-hour access to care at home, according to NICE in a fresh attempt to ‘get it right’.

New guidance released on 18 April said there are close to 40,000 terminally ill children in England. Figures revealed 80% of families with a child in the last month of their life would rather spend it together at home than in a hospital or hospice.

NICE has published a draft standard stating families who are caring for terminally ill children at home should have 24-hour access to specialist medical support and advice.

Deputy chief executive Professor Gillian Leng 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 2012 British Social Attitudes Survey found nearly two thirds of people would change their minds about dying at home if sufficient support from family, friends and healthcare staff were not available. Research from bereavement coalition Dying Matters found half of expected deaths currently happen in hospital, despite almost one in three of people saying they would prefer to die at home.

NICE said families caring for a terminally ill child should be supported so that the child can receive the right care, in the environment of their choice, in the aim of giving them ‘the highest quality of life possible’.

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