A MOTHER WHO secured an appropriate home-care package for her daughter only after a three-month battle with the Health Service Executive has said her case proves the system is fundamentally flawed.
In last week's HEALTHPlus,Claire Brennan said bringing her daughter Molly back to the family home in Kildalkey, Co Meath, from Crumlin Children's Hospital on the care package proposed by the HSE was putting her life at risk.
Molly Brennan, who is just over a year old, needs 24-hour care for a lung condition. She has Down Syndrome and requires ventilation through a tracheostomy.
Before she was admitted to Crumlin hospital, the child received just 10 hours of overnight home care, while her parents slept, and two five-hour morning shifts. Her mother said as her daughter could go into cardiac arrest, it was too dangerous to bring her home until the care package was increased.
The day after the interview was published in HEALTHPlus, Ms Brennan was contacted by the HSE to say she would receive an extra 30 hours help.
“It means Molly won’t be hospitalised. It means we can be a family again and we won’t be on the back foot all the time,” she said. Ms Brennan and her husband Ciaran have another daughter, two-year-old Sofie.
According to Ms Brennan, the HSE said it was granting the extra hours as it had only now received the necessary social worker’s report on Molly’s needs.
“If that’s the case, the report should be done before the child leaves the hospital,” Ms Brennan said. “You should be looking at the safety of the child before you let it go home, rather than when the mum starts moaning.”
Although she was assured last week she would receive the extra help, Ms Brennan was not confident she would get appropriate assistance.
She said, “I’m not going to move until these nurses appear and I’m convinced they are able to work with tracheostomies.”
She said, however, she felt guilty about other mothers with similarly sick children. “There’s so many people going through that hospital and out the other end without the right support,” she said. “The fact that we got the package needed for Molly only after a three-month battle proves the system is fundamentally flawed.
“The funding should be held in a central pool and made available depending on the needs of the child and not where they live.
“This happened for us in the end but it should be the norm not the exception. Having a very sick child is devastating for a family and having to fight the system is exhausting.”
