Concern as hospice funding slashed
A SUFFOLK mum has spoken of her concern at plans to withdraw funds from a children's charity that helps care for her terminally ill child.Louise Healy relies on the East Anglia's Children's Hospices (EACH) to provide respite from the demanding roll of providing 24-hour round-the-clock care for her severely disabled son, William.
A SUFFOLK mum has spoken of her concern at plans to withdraw funds from a children's charity that helps care for her terminally ill child.
Louise Healy relies on the East Anglia's Children's Hospices (EACH) to provide respite from the demanding roll of providing 24-hour round-the-clock care for her severely disabled son, William.
For the past eight years, the youngster, who is blind and suffers from spastic quadriplegia, epilepsy, microcephaly (a defect in the growth of the brain), and scoliosis (curvature of the spine), has spent up to 28 days a year at his local hospice in Milton, near Cambridge.
But Mrs Healy has been left uncertain of what the future holds following an announcement that a three-year funding agreement with the Big Lottery Fund is to come to an end in March, leaving the charity with an annual £640,000 shortfall.
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“It is a real blow to my family to find out these services might not be available in the future,” she said.
“William has been receiving care at the hospice since he was just eight months old, and it has been absolutely fantastic because it gives me a much-needed rest from time-to-time.”
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In the past five years, the number of families receiving backing by EACH has risen by 20%, taking the total to 350, although there are estimated to be around 700 families in East Anglia who could benefit from the service.
But the cuts in funding will mean the charity, which also runs hospices in Ipswich and Norfolk, will have to cut up to 25 full-time posts, and the number of available beds, to make up the difference.
“There are so many families in the same situation as me, some of whom are actually a lot worse off because their children need even more care,” said Mrs Healy, who lives with William and her three other children in Cavenham, near Mildenhall.
“I just don't understand why this money has to stop when it does so much good.
“The hospice has a lot of specialist equipment and facilities, such as a light and sound room, which obviously I can't provide for William at home, and it would be a real shame if I was no longer able to use the hospice.”
Graham Butland, chief executive of EACH, said: “There are one or two options available to us, one of which is providing more care in people's homes rather than in the hospice.
“But we recognise some families rely on having respite away from sick children for a few days at a time, so we are also looking at ways we can still provide this service for those who need it.”
As well as the £640,000 from the Big Lottery Fund, EACH relies on around £450,000 of funding from the local Primary Care Trusts, with the rest of its annual £4.7million costs - around 77% - made up from donations and fundraising.
Mr Butland added: “We are not going to bury our heads in the sand and hope that this all goes away, but instead we are trying to make sure we are still here in 10 years time by doing something positive.
“We would love people to write to their local members of parliament in a bid to persuade the Government to provide more funding for children's hospices.”
A spokeswoman for the Big Lottery Fund said the money that had been allocated to EACH was part of a £70million care package directed at adults and children in England.
“This funding was an exceptional initiative providing a total of £48 million over three years to support the extension and development of children's palliative care services,” she said.
“The Big Lottery Fund is continuing discussions with the Department of Health, with the aim of providing guidance and planning sustainability and fundraising workshops for the sector.”