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Senators ask: Why won't the State set aside money for terminally ill children?

A group of Senators are asking the State to put aside money for a home nursing care programme for children – but it looks unlikely to pass.

A ward in Crumlin Children's Hospital (File photo)
A ward in Crumlin Children's Hospital (File photo)
Image: Sasko Lazarov/Photocall Ireland

A GROUP OF Senators will put forward a motion in the Seanad later today to argue that the State should put aside dedicated money to set up a national programme to provide home nursing care for terminally ill children.

The Senators argue that it is nine times more expensive to keep a child in hospital than at home – and that the government’s own stated policies focus on caring for people in their own homes.

Despite this, the motion is unlikely to pass when it comes before the Seanad at 6 o’clock this evening.

Many parents and families of children with serious illnesses have spoken out in favour of children being cared for at home with proper support from professional healthcare workers, rather than having to stay in hospitals.

The HSE has in the past provided some funding to give parents support in keeping children in their own homes – but major cuts to the health service has seen the amount of money slashed.

Jonathan Irwin of The Jack and Jill Foundation says that it costs about €16,500 to provide care for a baby being kept in their own home per year but it would cost the State €147,000 per year to provide the same service through a hospital.

“This government and the Minister for Health has stated that [its] policy is to focus on primary homecare, to get people out of hospitals. It seems hard to see how they can argue against this,” he told TheJournal.ie.

Irwin said that while other groups such as geriatrics have had a dedicated budget to provide home nursing and care, the State has never set aside money for terminally ill children, leading to a major gap in services.

“This would seem to be a no-brainer,” said Irwin. “It’s what parents and babies need”.

An acute hospital is outstanding if you’ve got a broken leg or appendicitis, but these babies are so fragile that they need 24 hour care so there’s always someone to put an arm around them, to cuddle them. They’re not suited to acute hospitals.

There are an estimated 1,400 children in Ireland with serious and terminal illnesses. Around 350 children die every year from these illnesses.

Irwin said that the motion fits in neatly with government policy and saves the State money. He said:

Home is the absolute idea, and if you ask any parent, that’s where they want the baby.

The motion in the Seanad

Senator Mary Anne O’Brien, who is proposing the motion, was pragmatic about its chance of success.

The motion is supported by a number of independent Senators, including Jillian van Turnhout, Fiach MacConghail and Katherine Zappone. However government Senators are unlikely to vote in favour of the motion.

“One always lives in hope [that it could pass],” Senator O’Brien told TheJournal.ie. ”We all know the HSE is in a mess but it’s a question of prioritising a budget”.

It’s hard to imagine just how difficult it is to be the parent of a child with a life-limiting condition. It’s a dagger in your soul when your child is that ill.

You’re distressed, your family is distressed, so you have to go to the local HSE community service where you beg, you ask, you cajole for some money to care for your child at home, and they say ‘Sorry, the budget is not there”.

“One of Minister Reilly’s great visions for the health service is that the money should follow the patients,” said Senator O’Brien. “Let’s give it to the actual patients”.

The motion will be heard in the Seanad at 6pm and a vote will be held at 8pm.

Read: Irish Childhood Bereavement Network set up to support those working with grieving young people >

Previously: Hospices will need ‘goodwill of their local communities to keep going’ – IHF >

My favourite speech: CEO of The Jack and Jill Foundation Jonathan Irwin >

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