Ontario families are desperate for help, saying home nursing care for their children is a good idea but not working as expected.
Thirteen-year-old Jacob Trossman spent most of the last year in hospital. His family was elated when they were able to take him home, with provincial funding for 24-hour nursing care. Jacob was born with a rare neurodegenerative disorder, and could stop breathing at any time.
“We need a nurse to suction his airway, clear his airway and administer some medications,” said Marcy White, Jacob’s mom.
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Jacob’s homecoming has not gone as expected. “We are in a crisis situation every day,” said White, who added they don’t have nurses to fill all the needed shifts.
The province’s Community Care Access Centres co-ordinate the nurses, who come from agencies, but White said time after time they’ve been told there is no one available.
She provided a spreadsheet showing that in January about 40 per cent of the shifts were unfilled.
“It’s terrible. It’s hard to focus on anything other than, ‘Do we have a nurse coming for Jacob?'”
She said last minute cancellations are not unusual, and not all of the nurses have the appropriate training.
“We’ve had a nurse who fell asleep on a day shift and when I woke her up she apologized, she said she was taking too much codeine. We had another nurse who forgot to put the bed rails up on his bed and he fell out of bed,” explained White.
Other families have said they are facing similar problems.
Samadhi Mora Severino’s son Kian has cerebral palsy and she says he needs a nurse every night, but that typically only five nights a week have been covered.
There’s no accountability, either when if comes to getting shifts filled or to ensuring qualified nurses show up, according to Mora Severino.
“This is a system issue but it needs to be addressed because it is big one,” she said.
The Ontario Association of CCACs says the rate of missed care for nurses is just .025 per cent. But neither Mora Severino or White believe those numbers.
Global News has received emails from another half-dozen families describing a similar situation with home nurses. The CCACs declined interview requests.
White said it is past time for the government to take action on this.
“At this point my husband and I are barely hanging on, and there’s no end in sight.”
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