“Let me tell you a story about a little girl called Mia.”
“Mia’s not a Monash Health patient… but Mia’s story is the same unfortunately as many, many other patients.”
Paediatric Emergency Physician Dr Erin Mills knows these stories too well, having been involved in quality improvement work around family escalation of care since late 2020. She spoke about the project on a recent Employee Forum.
“Mia became unwell one day. She had a fever and was flat and listless, which was unusual for her. Mia’s mum, Amy, was worried, so she came into emergency. It was the first time she’d been to an ED with any of her four kids, Mia being the youngest.”
“Mia had been complaining about leg pain, but it was flu season, she was reviewed in emergency, thought she probably had a myositis associated with like flu, was told to go home and rest and recover.”
Throughout the day, Mia progressively got worse, with follow-ups to Nurse-on-Call and their GP, Amy was told again and again it was probably a viral infection. The concerned mum sat up with Mia the whole night. Mia was moaning and in pain, she had whole body pain by this stage, she was still febrile, flat and listless, and then she started to develop a rash.
At that point Amy took her back to the ED where she was rushed to resus. It turned out she had group A strep sepsis – she was critically unwell. Mia was resuscitated and spent many months in the intensive care and ended up losing all four of her limbs. But, survived.
“Amy’s wants us to share her story because it’s a good example of how the parent really does know when there’s something properly wrong with their child, and, unfortunately, it’s a common theme in adverse events, in adults and children, that the families say, we knew something was wrong and no one was listening to us.”
This is the kind of story that has driven the work Dr Mills has done, as part of a larger team, over the last few years.
Delayed recognition of clinical deterioration is a common theme in sentinel events at health services around the world, including Monash Health. Patients and their families are well placed to identify deterioration, but their expertise is often underutilised in clinical decision-making.
A previous review undertaken at Monash Health demonstrated that children whose parents were concerned they were getting “worse” were more likely to require admission to the Paediatric ICU.
“Despite this, it’s not currently standard practice across the organisation to routinely seek, document and respond to the concerns of patients and caregivers,” says Dr Mills.
As Monash Health Emergency Program Quality Lead, Dr Mills leads the project working group Partnering with consumers to improve the design and delivery of the Monash Health Family Escalation of Care procedure.
The project aims to recognise acute clinical deterioration by ensuring clinicians proactively assess and respond to the clinical concerns of consumers, and increase consumer awareness and use of family escalation of care procedures.
“We know that our clinicians are very much aware of deterioration in our patients… but this additional step to really broaden the team is so important,” says Monash Health Chief Executive Andrew Stripp.
Monash Health has a Family Escalation of Care procedure and families are encouraged to come forward with their concerns.
But, there are barriers, especially in higher risk families that don’t speak English, that don’t know the health system, and we know that they’re more likely to be involved in adverse events.
And that’s led into a bigger, organisation-wide project looking at the reasons why clinicians aren’t asking families, ‘are you worried’ – why aren’t we partnering with families to recognise when things are going off the expected clinical path, and how can we do that better?
Dr Mills’ message? “When families say they are worried, we clinicians should listen – and respond.”
You can watch Dr Erin Mills talk to this at a recent employee forum here: Employee Forum, 21 February 2023
We look forward to sharing some more of the extraordinary efforts of our teams and the feedback we receive at our employee forums throughout the year.
Featured image: Mia Wilkinson, 8, pictured at her Indooroopilly home, Brisbane 22nd of March 2021. Five years on from her presentation at emergency. Mia lost parts of her legs and arms due to sepsis and has done some rock climbing. (Image/Josh Woning)
Approved by Anjali Dhulia, Chief Medical Officer, Executive Director, Medical Services