According to a new survey by Together for Short Lives, the children’s palliative care umbrella body, Britain's sickest children are being denied vital palliative care because of an appalling lack of NHS funding. The charity puts the cost of providing palliative care to England’s poorly children at £200million a year, yet children's hospices receive an annual grant of just £11million.
Chief Executive of TfSL, Barbara Gelb told the Sunday Mirror: “The painful reality is that in England alone there are 40,000 children and young people with life shortening conditions.” Yet, four in five local authorities in England shockingly fail to plan or fund essential care for youngsters with life-threatening conditions.
One mum who had to fight for her daughter’s care said: “Having to cope with a very poorly child is worry enough without having to battle for everything they need.”
Lifelites chief executive Simone Enefer-Doy reacted to the findings: “That’s precisely why our charity is so essential for terminally ill children and is seeking to add value to the care received by the children and their families who use hospice services. We know that children’s hospices have to fight for the funds to provide vital care for terminally ill children. That’s why the donation from Lifelites – providing and maintaining specialist equipment to assist the children to play, to be creative, to control something for themselves and to communicate (whatever their abilities) is so important. The children’s hospices simply could not afford to do what Lifelites does and we don’t ask for a penny from them for it. In this way, while we fundraise to look after the complex technology, their staff and funds are concentrated on what they do best, caring for the children and their families."
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