She's losing her foot to a bedsore. Disability advocates say it speaks to a larger problem

Sandra Langlois has no other choice but to get her left foot amputated on Monday. For a year, she's had a bedsore that just won't heal.

"It's very debilitating," said Langlois, who is paralyzed from the waist down.

She says she's come to terms with it, but it took time.

"There was a period when it wasn't going well at all. I couldn't even leave the house," said Langlois.

"You may want to do everything possible to heal a wound, but if it doesn't want to heal, it doesn't want to heal. At some point you have to face the fact that you have no choice but to lose the limb."

She says she doesn't understand how the government is still not responding to the needs of people who experience bedsores, particularly after what happened to Normand Meunier.

The 66-year-old quadriplegic Quebec man chose assisted dying in March after developing a horrific bedsore — where bone and muscle were exposed — during his four-day hospital stay on a stretcher in Saint-Jérôme, Que., two months earlier.

He and his partner had asked staff for a special alternating pressure mattress that didn't arrive in time.

Days after his death, a local Quebec organization, Moëlle Épinière et Motricité Québec, demanded the Quebec government launch an independent inquest.

"Mr. Menier had been treated as an annoying patient rather than a knowing patient," said Ariane Gauthier-Tremblay, a community organizer with Moëlle Épinière et Motricité Québec.

"That's what upsets us a lot."

It's unfortunately a common thread among members of the organization, which Meunier was part of, said Gauthier-Tremblay.

"It's deeply sad because people acknowledge their vulnerability and their dependence toward the health system," she said. "Nobody is safe."

This week, the organization for people with reduced mobility called for more preventive care and training to make sure health-care professionals know how to avoid and treat bedsores.

In an emailed statement, the Health Ministry said issues relating to bedsores are a "priority" and in the past few months presentations have been made to sensitize personnel to the importance of monitoring pressure sores in people with spinal cord injuries.

"The Ministry of Health and Social Services works in collaboration with two centres of expertise for spinal cord injuries in adults," read the statement.

Gauthier-Tremblay says the centre in Quebec City is poorly managed and understaffed.

Quebec City's local health authority did not comment on whether there is a need for more staff, but in an emailed statement said the centre specializing in pressure sores does not have a waitlist and recently put in place a campaign to prevent patients from developing complex and severe sores. 

Gauthier-Tremblay says the health authority did not respond to the organization's invitation to their community gathering on Tuesday where about two dozen members shared their horror stories — underlining the importance of how specialized, proactive workers would make all the difference.

Fear and anxiety sometimes all-consuming

Those gathered gasped as Simon Plamondon held up photos of his severe bedsores. Over the years, he's been in and out of the hospital.

"I went through a four-month hospital stay," said Plamondon. "And it just came back. Then another five months in hospital with three bedsores."

Sherry Craig shared it's her biggest fear.

When she's awake, she's always thinking about moving, adjusting and sitting properly.

Sometimes, worrying about it consumes her.

"It's always there," said Craig.

"It just can go down the hill so fast because we don't feel it.... The thing that scares me the most is having a wound that gets complicated and you die."

Craig, a nurse in a long-term care home who has been paralyzed for 12 years, says she's had four severe bedsores — the last of which took over a year to heal.

She says better prevention care by health-care staff could prevent complications and hospitalizations, even reducing the cost for individuals, who she says can sometimes pay $95 per package of five bandages.

"It adds up very fast," said Craig. "That's the sad part. I'm able to [pay that] and it still took me a year. So what does that say for people that might not have the money to pay for those dressings?"

Having taken university courses on wounds, Craig says it's not surprising some health-care staff aren't aware of all the steps needed to prevent bedsores.

"In the course they didn't even talk about people that were paralyzed," said Craig. "It was just very general."

Without the support for staff and patients, she says it becomes a silent, vicious cycle.

"We've got to be able to talk amongst ourselves to find solutions," said Craig.

'Necessity to act' says Opposition critic

Elisabeth Prass, Liberal MNA for D'Arcy-McGee and Official Opposition critic for social services and people with disabilities, says the Quebec government has a responsibility to address the situation.

"We need to be aware of these situations to avoid them in the future because what happened to Mr. Meunier is really a tragedy and a tragedy we can't let be repeated in Quebec," said Prass, who attended the community organization's event in Quebec City Tuesday.

"Even myself hearing that people are spending three and four and five months stays in hospitals because of bedsores … makes us realize the necessity to act."

Prass says she is working with Moëlle Épinière et Motricité Québec to present a petition at the National Assembly in support of the organization's demands.