THE mother of a young man who died when his ventilator stopped during a blackout says health bureaucrats have told her it’s too expensive to install automatic backup generators for everyone who uses similar machines.
Lesley Murphy’s son, Conor, a muscular dystrophy sufferer and staffer for federal Labor MP Melissa Parke, died along with his best mate Kyle Scolari in July when a massive storm cut power to their Beaconsfield home as they slept.
Ms Murphy dismissed media reports there was no backup power, but said the system relied on the pair’s carer switching it over manually in the event of power being cut. He’d checked the pair earlier in the night, but had slept through the blackout.
Ms Murphy emphasised the family didn’t blame the carer, who’d been with Conor for seven years, saying to do so would condemn every family member or carer to sleepless nights every time there was a storm.
She’s irked however that when Conor was put on his first respirator at 16 years of age, the family was told nothing about providing battery backup for his ventilation system.
Conor had a built-in respirator on his wheelchair, but it had a limited time frame of a few hours.
The family received a wake-up call about how inadequate that was a few years later.
“You remember there was a huge storm a few years ago and the power was out for a couple of nights?” she says.
“We ended up having to drive up to Rocky Bay and camp there for a couple of nights because they had an emergency power supply.”
Ms Murphy says the family researched backup supplies itself and purchased a generator: some expert advice from the get go would have helped.
At the time, automatic backups weren’t available but since her son’s death she’s discovered medical supply companies such as Resmed do offer them on some machines.
Ms Murphy is a life member of Muscular Dystrophy WA and formerly sat on its board. She says since her son’s death, the association has peppered its website with warnings about the need for backup power.
She’s been approached by many parents whose backups were less sophisticated than hers who are now updating their systems, and says she’s heard that Conor’s death has sent shockwaves through the global muscular dystrophy community.
The association says it’s investigating ventilators with built-in backups.
Mr Murphy’s death is subject to a coroner’s inquest.
by STEVE GRANT