Sydney mother turns to Twitter in desperate bid to get daughter with Down’s syndrome vaccinated
The mother of a 14-year-old with Down’s syndrome was forced to turn to Twitter to find a vaccine appointment for her daughter, as parents urge Australian authorities to improve access for eligible children.
The federal health minister, Greg Hunt, announced this month that children aged 12 to 15 with specific preexisting conditions would be able to get the Pfizer vaccine from 9 August. This week that was expanded to include all NDIS participants aged 12 to 15.
But several parents have told Guardian Australia that finding an appointment has been almost impossible – leaving some to go to extraordinary lengths to book a slot.
Yolande Cailly said her daughter’s paediatrician had advised that Zoe, 14, would likely die if she contracted Covid.
Once the federal government announced it would open eligibility to some 12- to 15-year-olds, Cailly began trying to book an appointment ahead of the 9 August start date. “I started to look on platforms like HotDoc and there was just nothing there,” she said.
Cailly, who lives in the Sydney suburb of Ashfield, said she called her local GP, who said “they had no idea if they ever were going to receive more vaccines”, while other doctors listed on the federal government’s booking website were also unable to help.
“I inquired with New South Wales Health at the time, and again, they had no pathway for us,” Cailly said.
After 9 August, the mother tried to book at one of the state government’s vaccination hubs, but found “every time I tried to make a booking it was declined on the basis of age”.
Cailly said she told NSW Health it needed to inform the IT department to update the system so children aged 12 to 15 could make a booking.
“And then the lady on the phone, said, ‘Oh, you have to keep checking every seven to 10 days.’
“Then I questioned the fact that priority was given to non-priority groups, such as HSC students, and then she replied ‘Oh, everyone calls us with a sense of entitlement’.”
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In the UK, researchers have found the risk of dying of Covid for people with Down’s syndrome was 36 times higher than in the general population.
Cailly said she had started discussing the possibility of getting Zoe vaccinated with her paediatrician in February. “We discussed what if she was to get Covid, and he just bluntly said to me, ‘Sadly, she has no chance of survival’,” Cailly said.
“She has a heart condition, she has a respiratory condition. It’s always in the back of my mind, the risk for her.”
After making a complaint through a contact form for the NSW premier, Gladys Berejiklian, whose office referred her back to NSW Health, which did not reply, Cailly began venting her frustrations on Twitter last week.
“While I was agitating on Twitter, this guy contacted me and said to try Healthcare Australia,” she said. Healthcare Australia has been contracted by the federal government to vaccinate NDIS participants.
Cailly was able to use a link a fellow Twitter user had shared with her to book the appointment.
But when she turned up last Wednesday, she was turned away and told the company was not yet contracted to vaccinates 12- to 15-year-olds.
“[The doctor] was very apologetic, he was very understanding and said ‘Look, I know she must get the vaccine, she’s in a priority group, we want her vaccinated’.”
The next day the clinic called Cailly and told her the contract issue had been resolved. “I was there within 15 minutes of getting the phone call,” Cailly said. “It was a huge relief.”
Cailly questioned how other families with fewer resources or other barriers would fare navigating the system.
“People are finding out by just stumbling across this organisation that’s tasked to actually vaccinate people with disabilities,” she said.
“If that’s the pathway to vaccination for these kids … it needs to be clear. It needs to come from the government, whether commonwealth or state government, it doesn’t matter in the end.
“But the information needs to be made official, that this is the way to get these kids vaccinated. Because everything was by accident by talking to other people, basically taking a chance.”
The advocacy group Every Australian Counts published an open letter on Tuesday from another mother, Heike Fabig, who had also had difficulty getting a vaccine appointment for her child.
Mary Sayers, the chief executive of Children and Young People with Disability Australia, said her organisation had been hearing similar stories. She said access was currently worst in NSW. “There’s enormous sense of frustration, I think it’s fair to say,” she said.
By Wednesday, the NSW Health website was accepting bookings for eligible 12-15 year olds at the state government’s vaccination hubs.
A NSW Health spokesperson said its vaccination clinics were “offering the Pfizer vaccine to eligible children aged 12 to 15 years, in accordance with the Federal Government’s advice”.
“Appointments can be made at NSW Health vaccination clinics for children who are eligible via the eligibility checker,” the spokesperson said.
“NSW Health has developed a consent process to support informed vaccination of eligible children.
“An online consent form is in development and an interim paper-based consent form has been put in place.”
Asked whether it was providing parents of NDIS participants aged 12 to 15 with advice about how to get their children vaccinated, the National Disability Insurance Agency referred inquiries to the federal health department.
A federal health spokesperson said the government was “working with states and territories to vaccinate school age children both mainstream and those schools that educate children with disability”.
“There are communications on the health website,” the spokesperson said. “Pathways to vaccinations include GPs, state hubs and disability provider hubs.
“Healthcare Australia are one of the Commonwealth commercial vaccination providers working with disability organisations to deliver vaccinations.
“Communication will be provided regularly to parents and we would encourage them to connect with their usual pathways.”