It can be tough to watch Oula Alaoui clearing her son Yussuf’s airway. But it has to be done multiple times a day to keep him alive, so when she got funding for home nursing she was hoping to sleep through the night.
“I forgot even what it feels to have a full night’s sleep,” said Alaoui.
She found it next to impossible to fill the night shifts — day ones, not much better. And the nurses who did show up?
“Very, very few of them had experience with complex care.”
Some have been smokers, others slept on the job, Alaoui said. “It’s a very serious matter, you know he can choke in a moment.”
Alaoui is one of about 50 parents who shared their stories with Global News, detailing problems with home nursing — problems Global News took to Health Minister Eric Hoskins.
READ MORE: Dozens reach out on troubles with home nursing care
“I’m happy to look into these individual cases, with the families’ consent,” Hoskins said March 7.
He said if the parents gave permission for their Community Care Access Centres, known as CCACs, to talk about their case his office would investigate.
Global News provided the minister’s office with the names of a dozen families who consented.
READ MORE: Ontario health minister responds to families who say home nursing system failing them
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Two weeks later his office sent an update.
“Due to privacy laws, I am unable to actually share the patients’ names with the CCACs,” Hoskins said in the statement, which recommends the families go through the standard complaint process — the very process families told Global News was not working.
Requests for an interview were denied, so Global News tracked him down at an unrelated press conference.
“Even if they provide the CCAC with written authorization for them to disclose to the ministry, that doesn’t necessarily allow the conversation to go beyond that,” said Hoskins.
READ MORE: ‘Do we have a nurse coming?’ Families worry shortage puts kids at risk
When asked whether any of the CCACs had come forward to his office to say they had a family who wanted their case investigated, the minister did not have a clear answer. He repeated that privacy is key.
When the press conference was over he initially refused to provide additional time to discuss home nursing. However, after a brief consultation with staff he did return to answer more questions.
Hoskins was asked whether any kind if investigation has started.
“I’ve asked the ministry to work with the CCACs,” was his response.
The families also gave permission to their care co-ordinators to talk to Global News about their cases, but the contacted offices refused to.
Hoskin’s office has followed up with a new statement.
“At the Minister’s direction, the ministry is reaching out to CCACs to ask them to confirm that we had the appropriate consent to allow them to share information for the patients you have referred.”
It included a direct contact for the families. Meanwhile, families aren’t backing down.
Alaoui said they are tired of being bullied and made to feel like they are the problem.
“If you complain a lot that means you are trouble mom.”
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