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There are more than 70 children’s hospices in the UK, founded to provide a home for terminally ill children.
But researcher David Mortlock, who has spent 20 years researching the subject, says they do not provide enough support to help children and their families cope with death.
Prof David Mortlock, from the Centre for Healthcare Research and Innovation, says: “There’s a care gap in the child hospice sector.”
Hospices aim to relieve the pain of children suffering at the end of their lives.
But they are now failing to be as good at it as they should be, according to Prof Mortlock.
He says there is no formal assessment of the quality of care in children’s hospices across the UK.
He says children and their families, and the hospices that care for them, have a right to know “whether or not these services are doing what they should and if not why not?”
He said there needed to be an “invigorated discussion” to improve the quality of care for children and families in the UK.
He told BBC News: “There isn’t any common evaluation process to work out what’s going on.
“We need a formalised process to know whether the children are having the right conversations and are cared for appropriately.”
Prof Mortlock said the hospices had “no process for agreeing on what the aims of care are” for children and their families.
The hospices could not agree “a clear value-based approach” to reduce the distress of families.
Image caption Kirsty Paterson says she is often the one to talk to children in hospital
The children’s hospice services was set up in the UK in 1966 and has seen numbers grow from 11 in 1966 to more than 70 today.
They are no longer funded by the NHS, and do not receive central government funding, instead relying on voluntary funding from individual charities, trusts and corporates.
They are recognised as an essential part of palliative care, which is aimed at relieving suffering.
Kirst
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