From opposite ends of the country, Ade Stack and John Ward would probably have never met had their children not ended up on the same ward in Temple Street children's hospital.
During long months of visiting their children, they forged a friendship in the hospital corridors as they both struggled to get their babies home because of the lack of HSE funding for home care.
Ade Stack wrote a letter to The Irish Times earlier this month about her son Hugh who died on August 17th when he was just eight months old.
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He was born in the Rotunda and was transferred to Temple Street with complex health problems that were ultimately never diagnosed.
“Hugh was born on December 13th and we kind of knew things weren’t right. At 30 weeks he just stopped growing so I was induced at 36 weeks. He had complications from day one and never really got better.”
By February, when it became clear that Hugh was dying, Ade and her husband, Martin, wanted to have him among his family. “We just said ‘let’s go home’.
"You can't hold your child in hospital. I had to lie on the floor with him just so I could hold him because the [safety] bar on the bed doesn't come down."
Jack and Jill
After four months of being told Hugh could not be discharged without nursing support, they finally got him home for six precious weeks which Ade described as "some of the best of my life".
They received no HSE home help but the Jack and Jill Foundation stepped in with 10 hours’ nursing a week, and the couple paid for further nursing hours themselves. She takes out photographs of this time, happy scenes of Hugh at home cradled by his parents and with his older brothers, Theo (3) and Fred (2).
“He was much happier at home. It meant he could hear his family,” says Ade.
“When the boys were having their bath, he loved it because they would scream and he could hear them.
“He slept beside us, he got to enjoy the world . . . that life isn’t just full of people who want to take blood and change dressings.”
She describes the relief of being able to turn off the lights when you want, of not having a television constantly on in the background and letting her baby experience normal family life, however briefly.
While very complimentary of the care in Temple Street, she wishes it had been made easier to take Hugh home.
She asks why an elderly person who needs support to leave hospital can be approved within six to eight weeks for a home-care package but there was nothing available for her son.
“Why is there such help when you are 65 years old, but not when you are six months old? We did it for the elderly with Fair Deal, but what about the children who unfortunately get a bad deal in life? Who wants to live in hospital? It hurts as parents when you feel you have been robbed of time at home.”
Waiting for funding
Little Ellie is John Ward's youngest. Six months after being given the all-clear by her medical team, John and his wife, Sandra, are still waiting for HSE funding for a home-care package so that they can take Ellie home from Temple Street.
She was fitted with an emergency tracheotomy (a hole in her airway to help her breathe) at 10 weeks and will need to be monitored 24/7 until it can be removed.
“The tube can get blocked and she stops breathing. If you don’t suction it in three minutes, she could be brain-damaged. She needs a nurse 56 hours a week to watch her at night so we can get some sleep. But we are doing a bigger shift than anybody – 16 hours a day,” says John.
Without funding, this otherwise healthy and happy baby is trapped in hospital.
The Ward's family life has been turned upside-down. Originally from Galway, they were advised they would have a better chance of getting Ellie home if they moved closer to Mullingar hospital, which has expertise in tracheotomy babies.
They uprooted and moved to Tullamore. It turns out this wasn't great advice. Offaly is a dead zone for HSE funding, among the worst counties in Ireland from which to seek a home-care package. The funding request was turned down and they were told to reapply in January 2014 – the start of the new budget year.
John and Sandra were then told to use every contact they had to advance their case, to lobby their local politician, to write to Minister for Health James Reilly.
They have in effect been left to do battle with State bureaucracy at a time when they are already stretched to the limit travelling to Dublin in weekly shifts to be with Ellie while one of them stays in Tullamore to look after their two older children – James (4) and Mary Leigh (2).
No financial sense
"It is sad to be waiting for funds to bring a baby home," says John. "It is not the nurses or the hospital, it is all down to Offaly, there are no funds.
“The nurses are like my own sisters, they mind Ellie like their own child but my family is upside-down. I am missing my other kids, missing my wife.
“I would love if a politician could change places with me for seven months and sit inside a hospital with a baby who has no business being there.”
According to the Jack and Jill Foundation, apart from being a terrible burden for families, none of this makes financial sense. Its No Place Like Home report found that it costs €147,365 a year to keep a child like Ellie in a paediatric hospital bed. A typical Jack and Jill annual home-care package costs €16,422.
The HSE delay in approving her home-care package is leading to a staggering waste of resources. In the six months since Ellie was given the all-clear to go home, more than €73,000 has been spent keeping her in a bed she doesn’t need to be in.
While her family awaits a decision in January next year, a further €50,000 will be spent.
The HSE said in a statement that its policy is that children should be at home whenever possible and added: "There is no question of providing continuing care to children in an acute setting if this is not required."
Home care less expensive
It did not dispute that home care is significantly less expensive than hospital care but said, "The report did not compare the respective costs of the home-based care provided by the Jack and Jill Foundation with the cost of home-care nursing package provided by the HSE which has an average cost of €23 per hour."
According to this figure, a home care package of 56 hours of night-nursing a week for Ellie would cost €67,000, still a 50 per cent saving on her current stay in hospital.
Mona Baker, chief executive of Temple Street, said that, in their experience, children with life-limiting conditions do better when they are cared for at home surrounded by parents, grandparents and friends with appropriate care packages in place.
She said she “acknowledges issues regarding lengthy negotiations of home-care packages with the HSE”.
‘Something needs to be done to get children home’
Ireland is one of the few countries in Europe where there is no national paediatric home care budget. If you are elderly and need to be cared for at home, there is a dedicated budget of €130 million available through the Home Care Package Scheme, but there is no equivalent for sick children.
Jonathan Irwin, founder of the Jack and Jill Foundation, says the problem has become acute in the past 12 months.
“Now that everything has been pared back to the bone, it has really become apparent that children are suffering because there is no ringfenced budget for them. More and more babies are being trapped in hospital.”
The foundation’s funding is revealing, spelling out just how little the Government has given to these families. Since it was set up in 1997, the HSE has given €4.5 million.
The Irish public has trumped that figure tenfold, digging deep to donate €47 million.
“For us, having Hugh was a very positive experience but we need to start thinking about these children,” says Ade Stack, adding that something needs to be done soon about children like John’s daughter Ellie who are alive and need to get home.
“Someone said to me it was very soon to be writing a letter to The Irish Times after Hugh but I didn’t want to wait.
“When is the right time to actually do something? We have national budgets for raised bogs and corncrakes in this country but you know what? Children are more important.”
