Healthcare consumer advocates have raised concerns that a program aimed at giving patients and their loved ones access to a second opinion is not being adequately promoted in ACT hospitals.
The 'Call and Respond Early' or 'CARE' program is a three-step escalation process that allows a patient, their family or carers to escalate concerns if the patient is getting sicker or not improving.
If after speaking to their nurse, midwife or doctor on the ward or the clinician in charge a patient or carer is still worried, they can call a hotline which can alert a senior nurse to review their case.
If needed the medical emergency team can escalate treatment, or the senior nurse can give recommendations or negotiate with staff on the patient's ward.
The program was put in place at Canberra Hospital in Garran and Calvary Hospital in Bruce.
It works in a similar way to Queensland Health's 'Ryan's Rule' — established after the death of two-year-old Ryan Saunders, who died of toxic shock from an undiagnosed streptococcal infection in 2007 at Rockhampton Hospital.
But unlike Ryan's Rule, the CARE program is comparatively less well-known among Canberrans.
According to Queensland Health, Ryan's Rule was activated 31 times a week on average in 2021 and some patients and families say they owe their life to it.
Though it's a much smaller healthcare service, Canberra Health Services' CARE line received just 43 calls in the 2021-2022 financial year — less than one call per week.
Former patients from Canberra hospitals have told ABC News they were not told about the CARE program on admission and posters were seldom seen.
Rozalia's family wish they had been able to get a second opinion
Rozalia Spadafora, five, died at the Canberra Hospital in July this year.
Her family were referred there by a doctor after raising concerns about her symptoms, which had days earlier been put down to an ear infection.
They spent hours waiting in the emergency department with what her mother, Katrina, says appeared to be rudimentary and infrequent observations as Rozalia's condition deteriorated.
Ms Spadafora was not aware of the CARE system or any other patient or carer-initiated escalation processes.
"We never saw any such poster or knew about a program," she said.
Ms Spadafora conceded she would probably never know for certain whether a second opinion could have made a difference for Rozalia, but she is frustrated she did not know she had the option.
"If I'd seen something like that … I would have called the number," she said.
"We were trying to seek information, asking questions but there weren't many staff around.
"And every time we did, we got shut down – told we were in the best possible place with the best possible care.
"I felt like I was an inconvenience standing by my daughter's side."
The coroner is expected to hold public hearings in the inquest into Rozalia's death early next year.
"I really do not want any other family to have to go through what I go through every day," Ms Spadafora said.
"I'm missing my daughter, my son is missing his sister – it has destroyed so many lives."
Consumers advocates urge better CARE promotion
Health Care Consumers Association (HCCA) deputy director Kate Gorman said systems like CARE were vital, as carers and families usually knew the patient better than anyone else.
"They will spot things that other people don't," Ms Gorman said,
"The visitors know their loved one really well and in many cases they can pick up on the signs of medical deterioration – that the person is getting sicker – very early.
"For most people, we will never need the CARE program, or any other kind of escalation program, but in that moment where they become worried and they need some help and a medical review for their person, the challenge then is how do they find that information?"
Ms Gorman said escalation programs like CARE helped people who might not be able to speak for themselves.
"They're important for ... patients who are very young, patients who might have a cognitive impairment or patients who are seriously unwell," Ms Gorman said.
"In the case where a patient is able to advocate for themselves – they know themselves and their body and if they're taking a turn for the worse.
"It's really vital that if they do have those concerns, that they are able to draw attention to that and get the patient the medical assistance that they need."
HCCA thinks the CARE program works – but there is not nearly enough awareness about it in the community.
"There's room for improvement. I think that broadly applies to these escalation processes across the ACT," Ms Gorman said.
"Many people are not aware that there are things they can do as patients and family members, carers, visitors even.
"When consumers go to hospital as either a patient or a family member, there's a lot of information coming at you – and we filter out what we don't need."
She said even some staff were not aware of the program's existence.
"I think there could be more done in that space. Sometimes we find that staff are not aware either," Ms Gorman said.
"When staff get their orientation to their new workplace, I'd like to see the CARE program be part of that, so they can help consumers find that information too."
Ms Gorman thinks information about the CARE program needs to be provided through multiple platforms, like video – beyond the current posters or pamphlets.
"I think if you could find it, watch it at a time when you needed it, I think it would land more than posters or website information," she said.
"With a website, you need to know that that exists before you're able to find it.
"It's also important for Canberra that that information is translated into different languages. We have a lot people who are born overseas and sometimes cultural and language differences get in the way of understanding these kinds of systems."
Canberra Health Services reviewing the CARE program
Canberra Health Services' chief operating officer Cathie O'Neill said she was now aware of the concerns and was working to improve awareness of the CARE program.
"We have taken on board the feedback," Ms O'Neill said.
"We've implemented some revisions of the posters we have distributed around the hospital.
"It's also part of the [emergency department] brochure – and that's recently been translated into five different languages."
Ms O'Neill said she would not comment on Rozalia Spadafora's case specifically, but Canberra Health Services was also urging staff to make sure patients and families were aware of the CARE program.
"There's an awful amount of information that needs to be provided to patients when they're first admitted and this sometimes is probably one of the first things missed," she said.
"But the posters are in each of the in-patient rooms – so that is a prompt for the consumer to ask but also for the staff member to remember to alert the consumers to the program.
"Our team leaders and clinical nurse consultants on the ward are around their patients every day and that's also another opportunity for consumers and their loved ones to raise concerns.
"It's not just this program that is consumers' only way of escalating concerns."
Ms O'Neill said a formal analysis of "gaps" in the program was underway, with changes expected by January next year.
"The indicator for me isn't so much how often it's used but it's more that consumers are aware of it."
Clear communication between patients and healthcare workers crucial
An analysis of Queensland's Ryan's Rule use in surgical care, published in March this year, found of 364 activations between 2016 and 2021 less than 1 per cent met early warning criteria – and only half of those required admission to intensive care.
The study found 92 per cent of cases were resolved through discussion between the clinicians and their patients, family and carers.
Ms Gorman agreed that establishing and maintaining good communication in a healthcare setting was crucial.
"Sometimes patients and carers have other kinds of concerns about the care, about the treatment plan, or things that they don't understand," she said.
"Those things need to be addressed, but that's not the job of the CARE program."
Ms Gorman said communication between healthcare staff and patients more generally could be improved.
"Communication is one of the main concerns – if not the main concern for patients and their families in hospital."
"Often what's needed is better communication or more communication or the opportunity to ask questions."
Ms O'Neill said though there was no formal legal requirement for Canberra Health Services to provide a patient-led escalation process, it was considered best practice.
"Up to October, we'd had 45 calls and only four of those calls actually related to a patient deteriorating," Ms O'Neill said.
"People often get frustrated – particularly when there's been delays in care and sometimes that's just due to a lack of communication.
"We do have a separate complaints mechanism, so this really just for those really — hopefully – rare situations where patients feel that they need to escalate what's happening to them from a care perspective.
"I'm working closely with all of our care teams, to make sure they are responsive to consumer and carer concerns."
