No dialysis centre in Baie-Comeau meant 1,400 km weekly drives for North Shore kidney patient

Lise Allicie travelled 1,400 kilometres every week for eight years for life-saving hemodialysis treatment.

She suffered from kidney failure, and the closest place to go for dialysis was in Chicoutimi, about 230 kilometres from her home in Forestville, a town of 3,000 on Quebec's North Shore.

• Lack of pathologists leaves Quebec cancer patients in limbo

The five-hour round trip three times a week on a narrow, winding, two-lane road through a park could take twice as long during storms or under slippery road conditions.  Add to that the dialysis treatment itself, which takes four hours.

Her family says the long hours simply getting to her treatment wore her down, and chronic fatigue settled in.

Allicie died on Sept. 30.

Her widower, Martial Poitras, and son, Sébastien Poitras, blame the region's health board, the CISSS de la Côte-Nord, and the Quebec Health Ministry for not keeping a longstanding promise to provide treatment closer to home.

"They let her die, bit by bit," said Martial Poitras.

Health Ministry guidelines ignored

The Health Ministry's own guidelines state that  dialysis services should be available within three hours, round trip, for all Quebecers.

The former regional health agency announced it would create two new satellite dialysis centres in the region in 2009, and Allicie and her family felt the battle was won.

The plan was to open a centre in Baie-Comeau by 2013 — a commitment set out in its 2011-2012 annual report.

But now, five years later, only the centre in Sept-Iles is operational, and it isn't certain the one in Baie-Comeau will ever open.

Stacks of reports

Sitting in his bungalow that looks out over the St. Lawrence River, on the same property where he was born, Martial Poitras breaks down repeatedly as he tries to talk about his wife and their battle to have care closer to home.

"The Liberals are a bunch of liars," says Martial Poitras.

He pulls out reports written by the former health care agency, the Quebec Ombudsman, letters from the Health Ministry, photographs and articles.

"They told us they would solve her file 'shortly,'" adds Sébastien Poitras.

"It never happened."

Poitras says he was told repeatedly a centre in Baie-Comeau could only open when four patients needed its services. That's frustrating, he says, because the centre in Sept-Iles was opened for one patient initially and now runs at full capacity.

The CISSS Côte-Nord argues a minimum of four patients is required to justify training nurses to offer dialysis services and to make sure they don't lose their skills.

The director of Forestville's local volunteer bureau, the Centre Action Bénévole,  doesn't buy that.

"Even in 2009, everything was ready to do hemodialysis. The staff had been trained, there was room at the hospital, and the minister didn't sign - so there was never a satellite centre in Baie-Comeau," said Hélène Brochu.

Brochu knows the file inside out because Allicie's husband has a Secondary One education and needs help navigating the paperwork and bureaucratic demands, so he mandated Brochu to speak on his and his wife's behalf on the issue, in all official correspondence.

"I believe this is a budget thing," said Brochu.

"I believe with all the cuts, all that's going on with ministries, it was better for [the government] not to have a second centre," she said, adding patients were sent to Quebec City, Chicoutimi or Sept-Îles instead.

'These things take a long time'

Lise Boivin, the director of professional services at the CISSS Côte-Nord, disputes Brochu's analysis.  She says the lack of a dialysis centre in Baie-Comeau has nothing to do with dollars and cents.

"These things take a long time," she said.

Boivin says a new plan was presented to the ministry this summer to approve a hemodialysis care in Baie-Comeau — one that would be more "flexible" and "favour the autonomy of patients" by offering ambulatory dialysis service in patients' homes.

The plan for a satellite centre at the hospital is also still on the table.

"I believe we can do things that respects the safety and quality of services and are accessible for the population," Boivin said.

"I think asking people to travel several kilometres three times per week is not normal, and that's why we are trying to develop the services," she said.

Boivin said she expects an answer before the new year, but with government work winding down for the holidays, she still has not heard back from the Health Ministry.

The health minister's office referred CBC's interview request on the topic back to the same regional health board for which Boivin works.

How many move away?

Boivin said in the Baie-Comeau region, 22 people are living with varying degrees of renal failure, but only one currently needs hemodialysis.

That figure doesn't count people who have left the region to live closer to a hospital that offers the care they need right now.

"We are abandoned by the big centres and cities," says Sébastien Poitras. "We can't move all of the North Shore into the cities."

Hélène Brochu concurs.

"I think people here on the North Shore have the right to those services. They are public services," she said.

However, she says bluntly, she doesn't believe it's a priority for Health Minister Gaétan Barrette.

Until he acts, the Poitras men say they'll keep up their fight for dialysis services in the region — even as they face their first Christmas without their wife and mother.