The Crowleys with daughter Rebecca: 'She has to be watched all the time, even at night'

A terminally ill four-year-old girl is facing the loss of vital nursing support services due to government cutbacks which could mean she will be forced back into hospital rather than being cared for at home.

This is despite that caring for her in hospital will cost the state significantly more than if she were to remain in the care of her parents.

Rebecca Crowley, who is currently receiving palliative care from a combination of the HSE and the Jack and Jill Foundation, has a brain disorder called lissencephaly and she requires round-the-clock care.

Although the Jack and Jill Foundation said it was able to provide homecare nursing services at a significantly cheaper cost than the HSE, it has had to withdraw such services for children such as Rebecca who are aged four and over due to a funding shortfall.

The foundation has estimated that up to 100 children which it cares for could be forced to return to hospital, at a cost of more than €14m to the state, because the HSE has refused to bridge a funding gap for the charity of just €750,000.

While the foundation has continued to provide two-nights-a-week care to Rebecca, it warned that its funding situation meant this could not continue indefinitely, and that the HSE was required to step in.

But the HSE has yet to sanction the provision of the necessary nursing hours to enable Rebecca to remain at her home in Kilbarrack, north Dublin.

Her mother, Louise, told the Sunday Tribune that she had repeatedly asked the HSE to provide sufficient funding but "they just keep saying they've no money".

"If we don't get this, you just couldn't keep doing it. We'd have to bring her back into hospital instead of caring for her where she belongs, at home," she said.

"She watches DVDs and she loves people talking to her. But she couldn't be left on her own. She has to be watched all the time, even at night. I'm her full-time carer and every time she gets sick it just gets worse and worse. Any time she is sitting up it has to be in your arms; you have to hold her because she can't sit up by herself. Everything she does is what we do for her.

"The most important thing for us is the night-times. She can't be left alone at night in case she takes a seizure. Jack and Jill's nursing hours – 20 hours – that is what we use them for, to cover nights."

Jack and Jill Foundation founder Jonathan Irwin described the situation faced by Rebecca and many other children around the country as "sheer madness".

"We have roughly 300 children – all seriously ill and some palliative – and we have been shown to provide a better service and a cheaper service," he said. "The €750,000 extra we need will also help to prevent total chaos in hospitals which are already under immense pressure, and to ensure the children are cared for at home, which is what everyone wants."