CBC News has learned Alberta Health Services is eliminating a case manager position in Calgary specifically designed to help patients suffering from ALS.

Critics say the cut will be devastating for people living with the terminal and debilitating disease.  


Jane Rivest of the ALS Society of Alberta says the province's decision to eliminate a case manager for ALS patients in Calgary is a mistake. (CBC)

Richard McBride was diagnosed with ALS in November and told by doctors he had about three years to live.  

"You go home and you're alone, and you don't know what the hell to do," he said.  

He was assigned an ALS case manager who told him what to expect, connected him with services and got him the equipment he would need.  

McBride said he was shocked to hear that support has now been eliminated.

"I'm not asking for much. I'm asking for the end of my life to have some dignity to it," he said.

"And for the focus of the end of my life to be on my family, on my children, my community and not on dealing with a million different departments of government."

ALS, also known as Lou Gehrig's disease, is a neuromuscular disorder that causes nerve cells to die, leaving muscles progressively paralyzed.  

Alberta Health Services spokeswoman Julie Kerr said 80 patients are being transferred to general case managers within the homecare system.

"We have room and we have capacity within our system and those folks have the skills to be able to provide the support," she said.

"I'm confident that we'll be able to provide the same level of care that they've been receiving, and if folks feel like that's not the case we'll want to hear from them."

But Jane Rivest, who works at the ALS Society of Alberta, said cutting the position is a mistake because people with the disease need specialized care.

"I have been told by many, many of our patients that it’s the support that they receive from the system-wide case manager that makes the difference, that makes them want to keep on living," she said.

"Without the support it’s a pretty bleak looking road ahead."

AHS's own internal report shows the ALS case manager position was having a positive effect, significantly cutting down on emergency room visits and hospital stays.