‘It’s a disgrace that carers have to rely on charities for respite- it’s the government’s job to mind the vulnerable’ – Mum of critically ill boy (11)
The mother of a critically-ill child has hit out at the government for failing to provide adequate support to carers in Ireland and said it is a “disgrace” that many families have to rely on charities for respite.
Tracy McGinnis moved from Kilkenny to Kildare in February and said that although she is entitled to five hours of respite each week, there has not been a nurse available suited to her son Brendan’s complex needs.
The mum-of-two said that Brendan (11), who has severe brain damage caused by an in-vitro virus called cytomegalovirus, receives 15 days of respite each year from children’s charity Laura Lynn, but said the government is failing vulnerable citizens and their families.
“It is not fair that families like mine have to rely on charities to help them. It’s the Department of Social Protection’s job to mind the vulnerable. There are carers across the country suffering from depression and health complications because they don’t have a moment to mind themselves,” she said.
The mum said that caring from Brendan is a 24-hour job, one she never gets a break from.
“The work you do as a full-time carer without anyone to help you is incredible. You’re basically working 12 hour shifts back to back each day without reprieve. Would a nurse be asked to work seven days a week with no time off? Labour and union laws would not allow work shifts like that but that’s the life of a full-time carer. The government is failing us,” she said.
Earlier this year, Tracy wrote an open letter to Health Minister Simon Harris in July, when she was told it would be nine months before Brendan would be allocated a new paediatrician in Kildare due to waiting lists, despite his need for vital oxygen.
Tracy’s son Brendan has brain damage caused by a virus, which attached his brain when she was pregnant. As a result, he suffers from epilepsy, lung disease, osteoporosis and cerebral palsy.
“This virus unknowingly attacked his brain while I carried him inside of my own body for nine months,” she said.
Since Independent.ie made contact with the HSE, the McGinnis family has been allocated five hours of respite care each week and a school placement has been confirmed for Brendan.
A statement said: "The HSE can confirm that a nursing service has been secured to assist the McGinnis family in caring for their son at home and the HSE has spoken to the family to put the necessary arrangements in place.
"The HSE has also received confirmation that a school placement has been allocated to Brendan in St Raphael’s School Celbridge, this placement will begin in September."
Speaking of the allocated respite, Tracy said: "I would never begrudge or turn down those five hours, they are five hours I wouldn't have had otherwise. However, those five hours are generally used to do grocery shopping on your own and they don't give carers the time to recharge their batteries.
"There are so many health and mental health implications for carers doing medically skilled work and who have children they know they are going to lose.
"It would be great to have overnight respite or to get compensation for being a carer to be able afford overnight nurses to relieve us of the job that is really 24/7," she said.
Despite the family’s difficulties, Tracy said Brendan has brought so much happiness into her life and that of his younger brother Declan.
“He’s taught me more than I could ever teach him. He’s taught us unconditional love, patience and compassion,” she said.
Brendan is now on six doses of anti-seizure medication each day, as seizures have become more regular. Tracy said that although she knows her time with Brendan is limited, she is taking each day as it comes.
“Brendan’s life is quite limited and at the moment we’re going day by day. I don’t know what will happen tomorrow. All you can hope for is that he’ll get the best care possible, and I try my best but it’s impossible to keep going without proper respite,” she said.