A Sudbury family with a seriously sick child is speaking out about what they say is a failure of the for-profit health-care system that leaves them and other families unable to get the level of care they need.
Tina Senior and her husband Daniel Brousseau have decided to go public with the frustrations of trying to get suitable care for their six-year-old son, Alex.
The Val Caron family met with news reporters and Nickel Belt MPP France Gélinas on March 8 to outline how difficult it has become to look after the youngster even though they qualify for various health care services.
Speaking for nearly an hour, Senior said her family say they have faced difficulties and disappointments in the level of care provided to her son who has a disease known as Agenesis of the Corpus Callosum, a condition where the two sides of his brain are not adequately connected.
The condition leaves Alex with a lack of mobility; he sits in a special wheelchair and needs assistance feeding himself and staying hydrated. Most recently, he was in the hospital during Christmas because of serious digestive problems, said his mother.
Senior spent close to 20 years as a registered nurse at Health Sciences North, which included looking after intensive care patients.
Senior said, as a nurse and also as a mother, she is aware of the level of care Alex needs, but she has been disappointed time and time again.
When he is brought to school or to daycare, Alex needs a qualified homecare person to operate a feeding pump and a device known as a G-tube. She said it is a process that can take up to 90 minutes to hook up the nutrient bag, complete the feeding process and then dismantle the tube and pump. Because school staff are not regarded as qualified persons, a nurse from Bayshore Home Health is supposed to carry out the tube feeding procedures.
To Senior's dismay, there were occasions when the nurse would hook up the bag and then leave the boy unattended.
"The issue is that they would never stay for the duration of the visit,” Senior said. “So they would set up the feed and even though they were getting paid to stay there and watch the treatment, or you know, supervise the treatment, they would go render care somewhere else, where they were also being paid, and then returned back to the school.”
Leaving her child unattended during the G-tube feeding process is safety concern, Senior said. But when she has raised those concerns to Bayshore, the issue was not taken seriously, she said.
"Nobody was very concerned about my concerns and there was not a lot of support," she said.
Gélinas said one of the reasons the system is failing is because so many families are afraid to speak up, to speak out and challenge the system.
For Nickel Belt MPP France Gélinas, the family’s concerns aren’t new. She told Sudbury.com she has encountered so many families over the years who face similar disappointments. And while they have voiced their concerns quietly to the MPP, many worried that if they complained too loudly it would impact the level of service they receive.
"Most of them are in such a vulnerable position that they cannot risk the little wee bit that they have if they lose this," said Gélinas.
She said another part of the problem is that the Ontario government provides direct funding to the family, but is not helpful in ensuring that services are delivered.
Senior has to do the hiring of the home care nurses and the scheduling of all the appointments, along with filling out all the paperwork to ensure the home care workers get paid every week. If there is a paperwork error, the province will not provide the funding and the family has to pay the workers out of their own pocket.
Gélinas said that is a failing of the for-profit system in Ontario, which puts the onus and workload on the families.
"We are the only province that has privatized their homecare system, where big companies are often putting profit ahead of quality care. So in this particular case, it's Bayshore that has the contract to make sure that Alex gets fed and hydrated through a G-tube, and they get paid an hour and a half to provide that care."
At this point, neither Senior nor Gélinas had the answers on how to resolve their concerns other than to speak out, hoping that more residents in Northern Ontario would lend their voices. Senior said she has met with one other mother in a similar situation and caring for a sick child. She said she found it helpful being able to talk with the other mother. She said she is hoping more will come forward.
Gélinas said anyone needing assistance or finding themselves in a similar situation should contact her office.
Sudbury.com contacted Bayshore Home Health, which declined any immediate comment on the concerns voiced by Senior and Gélinas.
Len Gillis covers health care and mining for Sudbury.com.
