Angelique Burton-Ho was just 12 years old when she died.
“She was a bubble of joy, a ray of sunshine and our angel, that’s why we named her that, because of the way that she fought her way through everything,” her mother Armanda Ho tells SBS News.
Angelique was born with VATER syndrome, a congenital condition that, among other things, affected the development of her spine.
Extended interview: Armanda Ho’s call for national medical protocols after heartbreaking loss of daughter
In August 2015, Armanda took Angelique to Bowral & District Hospital in the Southern Highlands region of New South Wales, after she started vomiting and complained of shortness of breath and aches in her legs.
Two days after she was admitted, she died from cardio-respiratory failure due to severe pneumonia.
Armanda was a single parent, and Angelique her only child.
A coronial inquest into her death found her rapid decline was “not recognised in a timely manner”.
Her death was deemed to be potentially preventable.
The independent paediatric doctor who reviewed her case said she should have been medevaced to a children’s hospital as soon as she presented to the emergency department, given her known underlying condition.
Speaking publicly about Angelique’s death for the first time this week, Armanda says she tried to voice her concerns about her daughter’s deterioration to hospital staff but felt she was not been heard.
“You lose your voice,” she told SBS News.
“That’s the thing, a parent or a carer or their family members, they know when something is wrong [and needs] to be escalated.”
“I just felt there wasn’t anybody hearing me … I know my daughter, I knew what she needed.”
I just felt there wasn’t anybody hearing me.
– Armanda Ho, Parent
She was so worried about her daughter’s medical state that she filmed her on the night before she died.
The video shows Angelique’s laboured breathing.
At the time Angelique was admitted to Bowral Hospital, it had in place REACH, a NSW wide escalation procedure but Armanda she did not know it existed.
Amanda says she would have requested a medical review for Angelique had she known it was available.
She is now speaking out to raise awareness about preventable deaths and what to do when you have concerns about your child’s medical care.
A Bowral & District Hospital spokesperson told SBS News they have implemented numerous changes since Angelique’s death to improve patient safety and escalation procedures.
‘Ryan’s rule’ for all
All Australian hospitals are legally required to have medical escalation procedures, but there is no uniform national policy.
NSW, Queensland and the ACT have set guidelines in place.
In 2007, the death of three-year-old Ryan Saunders in Queensland, following a misdiagnosis, prompted the Department of Health to introduce ‘Ryan’s rule’ – a hotline available for carers to request a medical review.
In Ryan’s case, his parents were worried he was getting worse and they did not feel their concerns were acted on in time.
Maurice Blackburn lawyers have represented families impacted by medical error.
Principle lawyer Dimitra Dubrow told SBS News: “There is really no point in individual hospitals having their own slightly different processes, it’s really important that we have a national uniform process so that patients are aware of them and their rights.”
“It’s only when people utilise the second opinion process that we can see the benefits come from it.”
The law firm has written to all health ministers in each state and territory calling for a uniform approach.
“We think it is important that any patient across Australia has the same opportunity to ask for a second opinion.
“It shouldn’t matter which state a person is in, it shouldn’t matter which hospital, whether metro or rural, to get the same care and same access to a second medical opinion.”
Dr Robert Herkes, the Chief Medical Officer of the Australian Commission on Safety and Quality in Health Care, the national body for health safety standards, believes the first port of call for carers is to approach hospital staff.
But he agrees states should consider a uniform approach on escalation procedures.
“I certainly think that they should consider it, putting in statewide systems yes.”
Amanda says she would have requested a medical review for Angelique, had she known it was available.
“I don’t know if I would ever have closure but I believe that we can move forward to help other parents and carers, that’s really important to me,” she says.
“I really don’t want this to happen to another family.”
Naomi and Grant Day lost their six-month-old son Kyran in October 2013 after those treating him failed to detect what was wrong until it was too late.
“Both my mum and my husband’s mum were nurses and knew that something wasn’t quite right, and even though they themselves have spoken up to medical staff, explaining their concerns, it still didn’t make a difference,” Naomi says.
She believes her son would still be alive today if the escalation process was properly advertised and made available to them.
“I do believe that if we had been informed there was an avenue to request a medical review, I definitely think he would have been rushed to Sydney Children’s Hospital a lot sooner than when he was.”
Since the coronial inquest into Kyran’s death in 2016, the couple have worked with the NSW Clinical Excellence Commission to raise awareness and bolster the NSW escalation program, REACH.
“In all the paediatric hospitals in NSW now, they feature Kyran’s face on the posters … to add the personal story for parents and carers,” says Naomi.
“There are still a few more hospitals in NSW that needs to implement REACH but so far it’s in the majority of hospitals.”