Ella's mum bids for hospice help

TODAY brings an impassioned plea from a mother caring for a child with disabilities. The family, which has benefited from the Ipswich and Suffolk Press Ball in the past, is helped by the East Anglian Children's Hospice which is desperate for funds.

By Tracey Sparling

TODAY brings an impassioned plea from a mother caring for a child with disabilities. The family, which has benefited from the Ipswich and Suffolk Press Ball in the past, is helped by the East Anglian Children's Hospice which is desperate for funds. Features editor TRACEY SPARLING reports.

WHEN she was born, nine-year-old Ella was 11 weeks premature, weighing 1lb 15oz.

She now has cerebral palsy, is registered blind, has fluid on the brain, learning and behavioural problems, and three years ago started having seizures from epilepsy. Looking after her is a fulltime job, and today her mum Caroline from Ufford spoke up for the help they receive from Ipswich Children's Hospice in Pearson Road.

Caroline, from Ufford, said: “The children have a wonderful time being looked after by very special people, and parents get the chance to have a few hours of quality time, even if it is just to sleep and recharge our batteries a bit.

“Ella's seizures always happen in the night so I have a cctv monitor from her bedroom to mine, and an epilepsy alarm in her bed which will sound after 30 seconds of continuous movement - kindly donated by funds from (a past) Ipswich and Suffolk Press Ball. If it wasn't for her alarm and monitor, I would have to sleep in the daytime while she is at school, which I do sometimes anyway, especially if she has had a fit. A lot of her fits put her in hospital for several days, so I can't plan anything in my life, and if I do we all know that if she has a fit everything else goes out of the window. Apart from all these things she is a wonderful, determined, strong-willed little girl, with a mind of her own.”

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In 2005/2006 alone it will cost over £4.7m to run the three children's hospices in our region, with only ten per cent of income coming through government or statutory sources. Fundraising and the goodwill of the public are therefore vital. Caroline added: “The hospice, like parents, has to fight for everything they get, as the government take away more and more 'care services'. Without the hospice and the wonderful people who provide much needed respite, some parents would get no support at all. It disgusts me that they don't get enough funding from the government and as for the lottery fund, it's about time they had some 'normal' everyday people deciding what the money is donated to - this country has its priorities wrong.

“We don't choose to have 'disabled' children. Our children don't choose to be 'disabled' but that's life. We just have to make the most of our lot. We have healthcare that enables us to live longer lives, that enables babies born very prematurely to survive, even when they know these babies will probably have severe disabilities. This healthcare can keep the most ill and disabled people living longer, and then what? You are on your own.

“There are thousands of families with 'special' children, who rely on people to provide care like the hospice, even if it's just a shoulder to cry on and have a moan to. It's about time the government started looking 'closer to home' instead of wasting millions of taxpayers' money on who knows what.”

The good news is that Department of Health has recently announced that it is going to put £27 million into children's hospice services in England over the next three years, and the first instalment of £9 million will be in the current financial year.

The chief executive of EACH, Graham Butland, said, “We have been campaigning for this throughout the last year. At EACH we have had reduce our services and make some staff redundant as a result of the ending of lottery funding. Although there is no information at this moment as to how the money will be allocated between the 32 children's hospices across the country, I am confident that we will secure some of this money.”

The money is not a long term solution to funding the hospice, as it will have to be spent on certain things for the next three years. After that money has run out, the hospice will once again be facing difficult times. EACH also negotiates with primary care trusts to receive ten per cent of its costs - higher than other UK hospices which manage to receive five pc.

Caroline's appeal comes after an idea to build a new children's hospice in Kesgrave was shelved, after residents raised concerns over the effect of “sobbing children” and their “distressed parents”.

A planning application submitted to Suffolk Coastal District Council featured an eight-bed hospice, which would have replaced the hospice in Pearson Road, Ipswich. However, scores of angry residents complained to the council, claiming the creation of a hospice would be “insensitive” to residents and was inappropriate.

As an alternative to traditional presents, help the hospice by buying (or requesting) a Gift of Care.

For £15 you for example, you can pay for a play therapy session, or contribute to a music therapy or respite care session. You can donate the gift to a family or friend, and EACH will send the recipient a greetings card to let them know what you have bought.

Jill Brown and Guy Wiltshear from Stowmarket are getting married later this year. Having already set up home together, they felt traditional wedding gifts wouldn't be necessary and decided to put Gifts of Care on their wedding list instead, to benefit the Ipswich Children's Hospice.

Bob Jones from Bury St Edmunds was organising a party to celebrate his wife Fay's 60th birthday, and together they decided to ask for Gifts of Care in lieu of birthday presents. Bob is a trustee of East Anglia's Children's Hospices so was delighted to be able to contribute to their fundraising efforts in this way.

For more information call on 01953 715559 or see our website www.each.org.uk.

Ipswich Children's Hospice cared for its first child in May 1999.

The hospice was opened as a direct response to requests from parents for hospice services they could access nearer to home.

Ipswich is able to offer more day care as well as overnight stays. It has successfully implemented an 'after-school' club.

The hospice is a large bungalow with four bedrooms for children and one room for families to use for overnight stays.

There is a multi-sensory bathroom and a comfortable lounge area for everyone.

Staff include a physiotherapist, an occupational therapist, a family support and community palliative care nursing team, a play specialist and a volunteer chaplain.

EACH also runs hospices in Milton and Quidenham.

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