Introduction by Croakey: Patients’ lives are at risk from power outages caused by extreme weather events that are becoming increasingly common due to the climate crisis.
Blackouts – such as experienced recently in Broken Hill in far western New South Wales – pose great risks for many Australians reliant on life-saving power-operated equipment and devices like ventilators and dialysis machines.
A recent webinar convened by the Consumers Health Forum of Australia heard how power failures can be “a life or death issue”, and also discussed work being done by energy companies in consultation with people who rely on life support equipment to address these risks.
It was the latest in a series of #CHFTalks events reported by the Croakey Conference News Service. Watch the webinar in full here.
Marie McInerney writes:
When a big storm struck western Sydney in 2005, a power outage affected the ventilator relied upon by Danny Campbell-McLean, a 40-year-old man with muscular dystrophy.
The backup battery failed to kick in, he went into cardiac arrest and, when paramedics responded to emergency calls for help, they were unable to open the home’s electronic front door.
He died three days later in Westmead Hospital, a traumatic experience that for his wife, social worker and disability advocate Carolyn Campbell-McLean, still “feels like yesterday”.
Since his death, she has thrown herself into advocacy, “trying to make the world a better place for people with disability”.
“My goal is to make sure this doesn’t happen to other people and to other families,” she told last week’s Consumers Health Forum of Australia (CHF) webinar on ‘Powering Through: What to know if you rely on medical equipment during a power outage’.
Twenty years on from Danny’s death, the risks have remained high, including for Campbell-McLean herself. She also has muscular dystrophy and relies on a power supply to operate her electronic bed, a hoist that helps her get in and out of bed, a BiPAP machine to help her breathing overnight, and for her powered wheelchair.
The energy sector is now working with Campbell-McLean and others who are critically reliant on power supplies, to find out who they are and where they live, to promote backup plans and build education and awareness across Australia of the risks, particularly as the climate crisis drives more extreme weather events and often extended power failures.
Climate, climate, climate
The webinar was organised, said CHF CEO Dr Elizabeth Deveny, to help consumers, carers and other stakeholders make informed decisions on how to look after themselves or others who require constant access to life-sustaining medical equipment in power failures, as a growing number of Australians receive hospital care at home, and are ‘ageing in place’.
“For some people, the power going out is really a life-or-death matter,” Deveny said.
She and other speakers at the #CHFTalks webinar referred to the recent extended power failure in Broken Hill following thunderstorms that damaged power lines and left around 20,000 locals with on-and-off power, as well as to the 2022 floods in Lismore that triggered landslides, power outages and significant telecommunication interruptions.
Acknowledging that “climate change is creating more natural disasters which, in turn, inevitably will result in power outages”, panelist Mike Cole, Head of Customer Service at New South Wales-based Essential Energy, said it is a particular risk in regional and remote areas where the ‘poles and wires’ of energy supply are “mostly above ground and exposed to climate impacts”, he said.
“And while we’re working to minimise this disruption, of course, we can’t ensure 24/7 power supply,” he said.
Damascus moment
Campbell-McLean and her colleague Adam Johnston lead the Life Support in the Home Lived Experience Panel hosted by The Energy Charter, a group of Australian energy businesses that came together in 2019 to work with consumer representatives to provide better services.
Their focus is on the many Australians who rely on power supply for a range of other equipment, including oxygen concentrators, kidney dialysis machines, ventilators, intermittent peritoneal dialysis machines, and chronic positive airways pressure respirators.
Johnston, who has cerebal palsy, is a solicitor and long-time consumer advocate who has worked in various complaint handling roles for the NSW Ombudsman and the Energy and Water Ombudsman NSW, and serves on a number of advisory and governance committees including as a consumer advisor to the Northern Sydney Local Health Service. He is chair of the life support panel.
He became aware of the deficits in Australia’s energy infrastructure and disability care planning when, a few years ago, flooding in Sydney cut off power supply to his home for five days.
While he was better off than many others because he could breathe without assistance, he told the webinar he was nonetheless “in a lot of pain, not being able to lie appropriately, not being able to sleep appropriately”. He realised that every piece of equipment he relied upon relied on electrical power.
Joining the life support panel was his “Damascus moment”, being confronted with harrowing stories of people whose lives are threatened by power failures, many of whom live alone, are on fixed incomes, and may have few social connections to rely upon in an emergency.
With the climate crisis upon us now, “there are going to be more emergencies, more disasters, more fires, more floods”, he said.
That makes it all the more important that the efforts of The Energy Charter and energy providers are implemented, so the public can be sure “we won’t forget people who are most needy and deserving of our help”.
Worrying findings
Sabiene Heindl, CEO of The Energy Charter, told the webinar that the life support panel had been set up, with the support of CHF, in response to a worrying 2022 survey of more than 4,000 energy consumers who rely on life support.
This was “actually the first piece of deep live research into life support customers in the context of the energy sector”, Heindl said.
The survey found that more than half of the life support customers who responded did not have a backup plan for a power failure, and most expected that power supplies would always return in just a couple of hours.
“Of course in many cases, that’s just not practically possible,” Heindl said, also referring to the Broken Hill and Lismore examples.
The energy sector “can’t just put the energy back on in two hours when you’ve got something at that multitude of scale”, she said.
However, triage efforts have not been possible because energy providers have not held information about which customers on life support registers have critical needs for life-sustaining equipment that requires continuous power.
Under its Better Together Life Support Customers initiative, The Energy Charter, working with medical professionals and the lived experience panel, have now submitted a Rule Change request to the Australian Energy Market Commission.
It proposes defining a ‘critical life support energy customer’ as ‘a person who requires continuous power supply to their life support home to ensure that there is no loss of life or lifelong, irreversible injury’.
That definition would be determined by a registered medical profession, while non-critical life support customers are proposed to be defined as an ‘assistive life support customer’.
Backed by other measures, it aims to improve the identification, information accessibility and targeted support for life support power customers, particularly those whose health and safety are severely impacted by power outages, thus allowing energy providers to “more effectively triage customers” in blackouts.
Making plans
The Energy Charter is also leading a number of other strategies:
- a national medical registration process to identify life support customers who have critical needs for continuous power — currently the actual number of homes with registered life support customers with critical needs is unknown.
- a Household Life Support Equipment Backup Plan template to help all life support customers put plans in place to support their safety during both planned and unplanned power outages
- a national information and awareness campaign aimed at life support customers, and their medical professionals and carers, to support safety planning around power outages.
Campbell-McLean said the backup template “will look different for everyone, obviously, depending on their circumstances, what equipment they have, where they live, their social support network and so on”.
But it will mean “people can start thinking about their own circumstances and making sure that everyone in their lives – their support workers, their neighbours, their family – is aware of the backup plan and what needs to be done when there is a power outage or blackout.”
Unfortunately, one of the limitations to date is that the work covers only the electricity industry, but the webinar was told that discussions are underway about links to other essential services, including mobile phones, and looking also at accessing refrigeration capacity from big retailers for medicines storage.
Hospital experiences
Dr John Zorbas, a Darwin-based specialist emergency and intensive care physician, welcomes the initiative.
He has experienced a number of powerful storms that have caused the Royal Darwin Hospital to revert to backup power, including when Cyclone Marcus took out power supplies for about six days in 2018.
The emergency department is “the catch all for our disasters” and while it can get by for a day or two on backout, “by day five, day six, you’ve totally saturated all your local resources”, Zorbas said.
“In short, the longer the outage, the more impact it has on services, and they too in turn get saturated to the point where we need backup plans for our backup systems.”
Zorbas gave as an example where access is lost to patient records because general practices don’t have batteries or power support systems in place.
And regional areas, with fewer resources, are hit even harder, he said.
Key advice
The webinar concluded with each panelist asked to nominate one piece of advice they would give to help life support customers to prepare for blackouts.
Sophie McRae, Head of Customer Experience at SA Power Networks: Add an extra contact person (or more) when you sign up for a life support registration. “We take up to five extra contact people if needed, so that when there is a power interruption at your property, multiple people will be notified.”
Mark Cole: “Create awareness…and have a [backup] plan in place because power outages will happen.”
Adam Johnston: “Give your backup plan to everybody that you potentially need in an emergency.” That includes your doctor, local emergency department, key care organisations, and any others involved in your care. Johnson acknowledged that many people have concerns about privacy, “but I think this is a point beyond privacy…Do not be shy about this.”
Carolyn Campbell-McLean: “Often there’s just so much onus on the customer or the patient…but it’s also up to friends and family to really support that person in getting the right network around them and the right sort of supports.”
Dr John Zorbas: “Rehearsal. Depending on where you live, if your backup plan ends in attending hospital, it’s good if your pre-hospital service, whether it’s ambulance, staff, volunteer, a remote clinic, knows what your device is, that you have the device, that you know you have X hours or minutes before you need help…”
Zorbas said bureaucracy issues in some hospitals might mean it’s better for individuals to “reach out directly to your local emergency department” to rehearse the backup plan.
“It’s often a lot easier for us to work with people on a one-on-one basis, to know your needs, so that when you do get to the front door, we’re not starting from scratch. “The power going out shouldn’t be the first time you have to go through your backup plan.”
Johnston, who acknowledged the goodwill and support of the energy companies involved in the reforms, told the webinar he is confident the changes will make a real difference for people on life support.
“Everything that we have been talking about this afternoon is within our power to fix,” he said. “There is no need now for anybody further to die because of a lack of power.”
Heindl said there is great enthusiasm across the energy sector to address the issue, saying she feels it “sat under the radar for too many years…not because anybody was neglecting it, but just perhaps because people weren’t as aware as they should have been”.
“It’s now absolutely front and centre,” she said, promising that this co-designed work would not be “just words on a page”.
The Energy Charter has a “very robust accountability process” for all its Better Together initiatives that includes membership disclosures published on the website, she said.
“You can see what they’re doing, what they’re not doing, and what they’re committing to doing better next year.”
Read this X/Twitter thread from the webinar.
See previous #CHFtalks articles
