The mother of a child in hospital says bringing her daughter home under a care package proposed by the HSE could lead to her death, writes JOANNE HUNT
MOLLY BRENNAN, who is just over a year old, needs 24-hour care for a lung condition. The youngster, from Kildalkey, Co Meath, has Down Syndrome and requires full-time ventilation through a tracheostomy.
She needed 10 hours overnight home care while her parents slept and two five-hour day shifts before her most recent admission to Crumlin Children’s Hospital on July 28th when Molly’s heart surgery scar became infected.
Her mother says bringing her home again under the existing HSE care package will put her daughter’s life at risk.
“She can decanulate at any time which means her tracheostomy tube comes out,” Claire Brennan says. “You can stop it happening if you are standing by her bedside but I can’t do that constantly.
“It happened to her in hospital last Friday and she went into cardiac arrest,” says Brennan. The incident required two nurses to change Molly’s tube, another to give oxygen and one more to do chest compressions.
“The crash team were called too and they revived her,” Brennan explains. “I am supposed to deal with that at home on my own with my other, two-year-old child to look after . . . it’s just impossible. If anything like that happens to Molly at home, she could die.”
With Molly now due for discharge from hospital, her parents, who want to bring her home, say they cannot do so under the current care package.
“She needs someone by her bedside 24 hours a day,” Brennan says. “The hospital has admitted it and her respiratory team are now admitting it but the HSE will not give me any daytime help.”
Brennan, who with her husband Ciaran, has another daughter, Sofie, says, “The issue is, I have to stand at Molly’s cot-side seven days a week between the hours of 8am to 10pm and I have to neglect my other little girl . . . we are housebound.”
Brennan also fears that under Molly’s existing home-care package, the carers have insufficient training. “They aren’t allowed to give oxygen or meds or anything like that – they are literally babysitters and they wake me if they need me.”
With the ties holding her daughter’s tracheostomy tube in place requiring daily changing, Brennan says she needs more specialised help.
“This morning, the carers here did the ties and the tube dislodged and she had to have an emergency tube change. I need proper qualified people in my home, a nurse or a carer qualified to look after tracheostomies.”
The Brennan family say that, despite multiple letters and two emergency meetings with the HSE where it was agreed that Molly needed more help, specialised nursing care promised for one night and two mornings a week has not materialised.
“The HSE is only contracted to use one agency in Dublin and they don’t have nurses in Meath who deal with tracheostomies so I still haven’t had that nurse,” Brennan says.
“I was told I could put an advert in the local paper and then nurses could come to me and I could tell them to join this agency. I don’t have the time to do that.
“I see other mums going home from hospital with bigger care packages, without other children – because they live in different counties, not because their child is sicker and that drives me crazy.
“Molly needs that help but there is no budget in Meath. Because Molly has become a life-and-death situation, we’ve brought her back to hospital and we’re not moving.”
Contacted by The Irish Timeslast week, HSE communications manager Rosaleen Harlin said the Meath area manager had "received correspondence today in relation to this case and he will review the case and respond directly to the family".
At the time of writing, the Brennans had not received any increase to their homecare package.
Meanwhile, Jonathan Irwin of the Jack and Jill Foundation, which is supporting Molly’s case, said the charity can provide specialised home care to families like the Brennan’s, and it costs nine times less than hospital care.
“The average cost to the State of keeping a child in hospital is €147,365 per annum, whereas the average cost to care for a child at home is €16,422, or 88 per cent less,” Irwin said, quoting figures from a Trinity College report.
Following a July meeting with Minister for Health James Reilly, Irwin is calling for a Government investment of €1.3 million, or 50 per cent of Jack Jill’s annual budget, to provide homecare services.
He has also invited HSE executives to shadow Jack and Jill nurses to witness the challenges faced by families.