Māngere Connect neighbourhood support area coordinator Toni Helleur and in the background, her sons with deliveries for people in the community (Images: Supplied/Tina Tiller)
Māngere Connect neighbourhood support area coordinator Toni Helleur and in the background, her sons with deliveries for people in the community (Images: Supplied/Tina Tiller)

SocietySeptember 28, 2021

Disability advocates fear lockdown is leaving many alone, confused and short of food

Māngere Connect neighbourhood support area coordinator Toni Helleur and in the background, her sons with deliveries for people in the community (Images: Supplied/Tina Tiller)
Māngere Connect neighbourhood support area coordinator Toni Helleur and in the background, her sons with deliveries for people in the community (Images: Supplied/Tina Tiller)

The Covid-19 outbreak poses a unique set of challenges for those in the disability community, and there are concerns social services aren’t doing enough to support them.

“Right now, the community is suffering at levels that I’ve never seen before,” says Tania Kingi, who’s worked in the disability sector for almost 40 years. Kingi works for Te Roopu Waiora, a kaupapa Māori organisation in south Auckland that supports whānau impacted by disabilities. She says this lockdown has been the toughest yet for the people she helps – and is calling for all social services to step up.

“There are issues that have been around for a long time but have just been amplified by Covid,” she says. “It’s not the same as the first lockdown, as people aren’t as enthusiastic to work together and there’s far more [organisations] holding cards to their chests.”

Kingi says she’s been coming across many whānau with disabilities who are confused about why we’re in lockdown, due to lack of access to the internet or support people to explain what’s going on. “Most of the houses we are delivering food parcels to have their curtains closed and are peeking through, so we’re seeing a level of isolation and fear that we’ve not witnessed before,” she says. “We have this cloak of fear among our communities who don’t quite understand what’s going on because the information out there isn’t accessible to them.”

Dr Huhana Hickey (Photo: RNZ/Alex Perrottet)

Human rights lawyer and disability advocate Dr Huhana Hickey, who is a wheelchair user, says food security is “a major fear for a lot of disabled”, due to rising costs and the demand on supermarket delivery services and food banks. 

“Basically if you’ve got working people struggling to get food, imagine the struggle of those who are disabled, of whom 53% are on benefits. You can imagine what it’s like for them, because they can’t just go out and get it because of the risks.” 

Māngere Connect neighbourhood support area coordinator Toni Helleur agrees. She has run an essential food and goods delivery service through every lockdown in the past 18 months, and says witnessing how much the disability community is struggling has been a “real eye-opener”. “It really hit me seeing the magnitude of what it means to be isolated – until you see it first hand, you just can’t get it.”

Helleur has been helping families with multiple disabilities in their home, as well as a number of individuals living alone. She says the hardest situation was helping a wheelchair user who had suffered a stroke – he couldn’t communicate or lift the food parcel that was delivered, leaving Helleur at a loss as to how to help him effectively. “That hit me the hardest. You just forget the little simple things in life that we take for granted.”

Disability Connect chair Colleen Brown, who’s also a board member on the Counties Manukau DHB, is part of a community collective that has been delivering almost 100 food parcels a week. She estimates there are at least 200 families and individuals in south Auckland who have inadequate support right now.

“It’s almost a civil emergency,” she says. “What we know is disabled people and their families are going hungry. People are in situations that are not safe. But if you’re not seen and you’re not heard, then who is worried about your welfare?”

Brown says the answer is for social services to coordinate their services better and collaborate with each other. “There’s a number of organisations out there getting a lot of money, yet they are referring people on to groups such as ourselves. We know they are getting a lot more money than us, but what are they doing with it?” Kingi shares her frustrations, saying if all the organisations funded to support people “were doing their job properly, we wouldn’t have this situation”.

“They’re not competent. There’s a particular expertise to engage with whānau with disabilities, but a lot of organisations see this as the too-hard basket.”

Around 42% of those receiving disability support in the Counties Manukau DHB area are fully vaccinated, which is in line with the general population’s rate. But given the disabled community had early access to the vaccine and are considered a vulnerable population, disability advocates are disappointed by the government’s rollout for this sector. “The government over-promised and under-delivered on vaccinating disabled communities. I think they underestimated just how challenging it is,” Brown says.

Hickey says accessing vaccination centres has “been problematic” and there hasn’t been enough information targeted at her community.

“There is a bit of vaccine hesitation, and the anti-vax movement is affecting this. I know the information is there, it’s in sign language and easy-read formats, but I have not seen it out in the community. It needs to be on TV, radio and social media – and we haven’t seen anything.” 

Counties Manukau Health chief executive Margie Apa says a more targeted approach is being planned, however. “We do have mobile teams who are going to go into people’s homes, because we’re at a point where we have got the mass populations through, but we’ve got some capacity to really start targeting people who can’t get out of their houses.”

A spokesperson for the Northern Region Health Coordination Centre, via a written statement, said south Auckland is being prioritised for in-home vaccination visits and “accessibility audits have been completed at all 13 of our large community vaccination centres.

“Access to the vaccine for disabled people is a top priority. We are constantly striving to improve access by rolling out new initiatives to meet different groups’ needs. “

Kingi says this is a good idea, but it has to be accompanied by staff who can communicate effectively, given high levels of fear and distrust within the disability community. “People are taking tidbits of news coverage and creating their own conspiracies,” she says. “[Going into homes] is needed, but what we’re concerned about is whether people are well informed about the decisions they are being asked to make.

“I just hope it works.”

Keep going!
Getty Images
Getty Images

SocietySeptember 28, 2021

Is Covid-19 really compromising our hospitals’ cancer care?

Getty Images
Getty Images

Last week two media outlets claimed ‘almost half of new cancers’ went undetected because of the Covid lockdowns last year – and that it could be happening again now. Is it?

This story first appeared on RNZ. Listen to the original Mediawatch episode here.

Auckland University’s emeritus professor Des Gorman has been a vocal critic of the government’s Covid-19 response so far.

“We have a mortal fear of dying of Covid and yet we allow delayed surgery and delayed cancer care,” he told Newstalk ZB last Monday.

Host Mike Hosking agreed.

“We have lost our marbles when it comes to health matters in this country. We are more gripped by whether people end up in hospital with Covid … when there are people dying of cancer that couldn’t be treated and haven’t been,” Hosking told his listeners soon after.

“The Cancer Control Agency was yesterday talking about how half of new cancer cases are going to be missed,” he added.

Hosking had two stark stats at hand from the CCA / Te Aho o Te Kahu to make the point: 1031 fewer cases recorded compared to the same period the year before – a 47% drop.

Worrying stuff, especially as we’ve had an even longer lockdown this year – and Auckland is still in alert level three now.

Backlogs over lockdowns of 2020 at various district health boards have been reported by the media in the past, but Hosking didn’t mention that the 47% drop covered just one month: April 2020, our first month ever in level four when disruption was at its peak.

Cancer diagnoses dropping off in early 2020
Cancer diagnoses dropping off in early 2020 (Image: Cancer Control Agency report 2020)

But the same CCA report that recorded the big drop also found that cancer registrations only decreased by about 7% in the first four months of 2020 when compared with the same period in 2019.

Attendances for intravenous chemotherapy were down just 3% in April 2020 – and were stable over the rest of the 2020 lockdown.

A CCA update in August 2020 found a substantial increase in new cancer registrations and diagnostic procedures in June 2020 compared to May 2020, and 225 people were beginning treatment.

A longer assessment in The Lancet later in the 2020 found “the impact of Covid-19 on cancer care in New Zealand had been largely mitigated”.

“Overall, there is no evidence of lingering disruption to cancer registration, diagnostic services or treatment following the early shutdown,” concluded nine experts including Dr Chris Jackson, the Cancer Society’s long-serving medical director.

CCA chief executive Dr Diana Sarfati told Mediawatch neither she nor the CCA has ever said “about half of new cancer cases are going to be missed,” as Hosking claimed on Newstalk ZB.

It seems likely he misread a Stuff story the day before which appeared in papers nationwide: Covid and the hundreds of missed cancers.

“New Zealand will emerge from lockdown into a deadly unknown … with history showing nearly half of new cancer cases will have been missed,” the story said.

Online, the headline of Stuff’s story is a bit more nuanced: Missing lockdown cancers yet to be measured – but history paints ominous picture.

But more recent history is actually not so ominous, according to the CCA.

“The country’s cancer system is operating well, and people are receiving the treatment they need,” Sarfati​ said earlier this month during the level four period.

She said all district health boards were doing essential cancer treatment and surgery during the current outbreak and travelling between regions in alert levels three and four is allowed for essential cancer appointments.

“I would be concerned if people had the impression cancer treatment stopped as a result of lockdown because that is not accurate,” Sarfati told Mediawatch.

She said it is too soon to say if “cancers are being missed” in the current outbreak but CCA “is again measuring cancer services in response to the re-emergence of Covid-19 to see if there has been a decline in diagnosis of cancer”.

The data will be available next month.

“We would not expert to see such a substantial drop-off as we saw in the lockdown last time,” she said.

The reason all this caught the attention of Stuff – and Mike Hosking’s jaundiced eye – in the first place was a fresh CCA campaign urging people to go to their doctor, even during lockdown, if they notice symptoms.

Let’s hope more people get that message rather than the overstated assumptions about life-shortening delays and disruptions in the media last week.

Last Tuesday Hosking also told his listeners:

“Australia is the one to emulate. Of course we could be leading Australia if we were driven – but we are not. We are cowed and run by fear.”

But one thing about Australia we wouldn’t want to emulate right now is its cancer treatment disruption, judging by media reports.

Two weeks ago Melbourne’s main daily The Age reported “life-saving treatments for cardiac and cancer patients are already being delayed … as waiting lists blow out to record levels”.

The Covid-19 Cancer Taskforce chair for Victoria told the paper cancer surgeries were already being delayed because people were being treated for coronavirus.

“More than 2500 cancer diagnoses were missed in Victoria between April and October last year, with a steep fall in the detection of prostate, skin and breast cancers, along with head and neck tumours,” The Age reported.

The Sydney Morning Herald recently reported one in every five people who have died of Covid in New South Wales contracted it in its hospitals – and two cancer treatment centres became exposure sites in the current outbreak.