Lack of HSE funds leave children trapped in acute hospital beds
Six months after getting the all-clear, little Ellie Ward is trapped in hospital due to lack of HSE home-care funds
Ellie Ward in Temple Street hospital, Dublin with her dad, John Ward. Photographs: Dara Mac Dónaill
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.
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.”