Quadriplegic senior says changes to home care putting his health at risk

Since george gilbert aime murphy Hindley's biking stroke in the summertime of 1999 left wing him paralyzed from the make out down, he's relied on the help of community health workers coming to his Saanich home for some of his daily needs, including his bowel routine.

But after more than 25 years of relatively consistent care, the 72-year-old says that has changed.

Hindley said that in the last couple of months, many of the workers coming to his aid have not been trained to facilitate digital stimulations, a way to initiate bowel movements for people with a spinal cord injury — leaving him without a bowel routine for days on multiple occasions.

"I feel sick at times. My stomach hurts constantly," Hindley said.

"And then again, just days later, for five days in a row."

Advocates and doctors say that inconsistent care for quadriplegics is common, and situations like Hindley’s can be life-threatening.

Dr. Andrei Krassioukov, a professor at the University of British Columbia's department of medicine and staff physician at G.F. Strong Rehabilitation Centre, said he often hears from patients about high turnover among their home-support workers, workers missing appointments or care hours being cut.

Krassioukov said clinical recommendations for bowel routines in people with high-cervical spinal cord injury are at least every other day. Retaining fecal masses causes discomfort and pain, he said, and in worst cases can cause a spike in blood pressure and lead to a stroke.

The Hindleys said they raised their concerns with Murray's home-support manager, and were told staff shortages are affecting the availability of workers.

They also said they were told that some workers have expressed reluctance to return to care for Murray, but the nature of those concerns is unclear.

The family also said they were advised to consider private care options when workers are not available, or Choice in Supports for Independent Living (CSIL), a B.C. Program where families receive funding from their respective health authority to hire their own care.

However, Mike said private care isn't a realistic option in situations where workers don't show up at the last minute.

He also worries the labour involved in hiring and managing their own home-support workers under CSIL will place a heavier burden on his parents, although it's an option they're considering as not to "have to worry about risk of death and risk of injury" for his dad.

"The other suggestion they made was that, if we feel that my dad's life is at risk, that we call 911," Mike said. "But I don't believe that their lack of care should ever put us in that situation."

Island Health notes that some tasks require specially-trained workers, which can affect the timing of delivery.

"We apologize for the impact this can have on clients when those specially trained staff are not available," it said in its statement.

The health authority also said all clients have backup plans, and that it works with them on those plans when last-minute changes occur. A brochure from the health authority also directs clients, where no one is available, to "talk to our staff."

Asked about the inconsistencies in care for home-support patients, B.C. Minister of Health Josie Osborne said she expects all standards in home-care delivery to be met, and she encourages patients to come forward with concerns about their care.

"All seniors deserve to be treated and cared for with dignity and respect," Osborne said. "That is absolutely my expectation."

Duncan Campbell, one of the co-inventors of wheelchair rugby and a peer support specialist with Spinal Cord Injury B.C., said consistency of care is important for people who are quadriplegics.

"You're comfortable with who comes, you know; they know what they're doing," he said. "You can just chat with them and get things done."

The situation has been difficult for the family, with Joan, Murray's wife, saying she's appalled with the system.

Mike said his heart breaks for his dad, who recently brought up medical assistance in dying (MAID).

"He's talking about getting MAID ... Because it puts too much stress on his family. And that is unacceptable," Mike said.

Murray said the situation has been stressful for him and "very degrading."

What he wants is simple.

"Just give me the help I need."

Reporter

---

---