Where are the Government funds? (From News Shopper)

Where are the Government funds?

10:23am Wednesday 27th March 2002 in News

THE News Shopper's New Year campaign is to press the Government to fund children's hospices and hospice care at home, as it does for adults.

Chief reporter LINDA PIPER looks at how children with life-threatening and life-limiting illnesses are cared for locally and who picks up the bill.

The picture of who cares for desperately ill children across the News Shopper area, and who pays, is a complicated one.

But the very clear message is that, much of the time, the NHS relies on charities such as the Ellenor Foundation and Demelza House children's hospice to subsidise the care.

Most health authorities and Primary Care Teams who commission care for children try to keep them in their own homes.

All agree the reason why adult care for the terminally-ill gtes up to half its costs from the NHS while children's care receives less than four per cent, is historic.

The children's hospice movement is only a few years old. When adult hospices were first launched there was no NHS funding either. But now hospice care has become an integral part of the care of terminally-ill adults, the NHS contributes.

Local hospices for adults get between a third and a half of their running costs paid each year by the NHS in the form of a block grant. But children's care only attracts specific payments tied to a contract for a specified time and for a named child. None of the services for terminally-ill children locally, provided outside the NHS, gets any block funding at all.

Dartford, Swanley and Gravesham PCT does receive bids for block funding from the Ellenor Foundation but commissioning manager Chris Lock said: "We have to prioritise. There's never enough money."

She said the PCT could bid for different Government grants but there isn't one specifically for palliative child care.

In Lewisham, palliative care at home is provided by an NHS trust, so it is fully funded, but the health authority does refer children to Demelza House, the children's hospice in Sittingbourne. It pays Demelza only for that specific care and doesn't give any block grants as it does for local adult hospice care.

Bexley PCT gives a block grant to the Greenwich and Bexley Cottage Hospice for adults but only funds children's care on a case-by-case basis, meaning there is no guaranteed income from Bexley for either the Ellenor Foundation's hospice care at home, or for Demelza House.

All the palliative care at home for children in Greenwich is paid for by the NHS through the children's community nursing team based at the Queen Elizabeth Hospital. It also pays for care on a child-by-child basis at Demelza House.

Thankfully, the number of children needing hospice care is far fewer than the number of adults another reason why the authorities pay on a case-by-case basis rather than a block grant.

From their point of view, it makes economic sense when money is short. But it leaves organisations like Demelza and the Ellenor Foundation scrabbling for the money needed to provide the rest of their care and support to families.

Demelza has to raise £1.6m each year and, with no guaranteed income, it is no wonder it was forced to close beds and make some staff redundant last year.

If you would like to help in the News Shopper campaign, write to your MP now and urge him or her to ask questions in the House of Commons and raise the issue with Health Secretary Alan Milburn to try to bring about a change in NHS funding for children's hospices and hospice care at home.

To donate money, either to Demelza House or the Ellenor Foundation, send cheques or postal orders to News Shopper Appeal, Mega House, Crest View Drive, Orpington, Kent BR5 1BT.

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BIG hearted News Shopper readers have supported our campaign. Already more than £2,000 has come into our offices in donations for Demelza House and we say a big thank you.Thanks to Hayes Free Church which has given all £2,080 from its Christmas tree event to Demelza after reading our appeal. Two dozen village organisations in Hayes installed and decorated Christmas trees in the church over the holiday to raise the cash. Another big thank you to Nadia Dunham of Sidcup and the Ash Cum Ridley Masonic Lodge. She chose to donate all of the £3,300 raised during the lodge's Ladies Festival Weekend and other donations to Demelza after reading of the hospice's plight in the News Shopper. With her husband Greg, Archie and Margaret Torrance, Jenny Goodhew and Graham Sugden, Nadia visited Demelza to hand over the funds raised at the weekend.

ROSIE (pictured), just three-and-a-half, was diagnosed with leukaemia last year. She lives in New Eltham with her parents and sister and is one of many children helped by the Ellenor Foundation.

She has just finished a course of intensive treatment for her illness and is now on a maintenance regime for the next year, to keep her condition stable.

Mum Sarah describes the help she has had as "brilliant" and is pleased with the 24-hour on-call service.

Staff come to the family home to take regular blood samples for Queen Mary's Hospital, where Rosie is being treated, and to give her a series of daily injections.

The Ellenor Foundation cares for around 80 children in their homes at any one time. It is a service which is paid for entirely by donations and costs the charity about £350,000 a year. The foundation does get NHS funds when it is contracted to provide specific care over a specified period for an individual child, as part of that child's care package. But all the rest of its work is funded from donations.