In 2021, Leona Murphy was Chair of the RBWH Foundation, bringing skills from almost thirty years as a highly-regarded business executive. The hospital was a place she had become very familiar with. Then something happened that made her see it, suddenly, from a very different perspective.

Alexa Leary, the daughter of Leona’s friends, Russell and Belinda, had a terrible bike accident and ended up in ICU. Her life was on the line. Her family needed to be close. The COVID pandemic added another layer of complication. In an instant, for Leona, the patient and family hospital experience became a focus.

‘It shone the light on families’ experiences in ICUs,’ Leona says, ‘and my husband Gerry and I were really quite alarmed about the lack of support that families received and decided we wanted to do something about it’

It wasn’t just RBWH. It turned out it was normal. Across Australia, ICUs at children’s hospitals were ready for families – to include them and care for them – but adult hospital ICUs weren’t. There were no holistic programs to provide care to families in adult ICUs.

The first step to fixing that was interviews with families and with staff, then focus groups and further interviews, with an emerging understanding of pain points for families and staff. Three things became clear.

First, the built environment of the waiting area. It was clinical, with the social distancing that COVID required reducing seating. For the same reason, space had to be made inside ICU and equipment was being stored in the waiting area. It was not a comfortable place to be. A dedicated place for clinicians to have the family meetings that can be so important in ICU was just as impersonal.

Second, there was often no way for families to work the place out, make sense of it. If rostered social workers were busy, visitors would arrive wide-eyed, stunned, horrified, to an empty waiting area and a locked door. Which had a buzzer, but ICU was being ICU and, if the clinicians were focused on patient care, families understandably had to wait.

Third was communication. Many families weren’t even able to be there at the door, hitting the buzzer. RBWH ICU services all of Queensland. 95% of ICU admissions in 2021 were from outside its catchment. How did those families get information, when they weren’t even able to be there?

Perhaps it’s no surprise that some studies in Australia and beyond show 40% of family members of ICU patients suffering symptoms of PTSD.

Meanwhile, the Leary family had seen money coming in in response to Lex’s condition and had decided to do something with it for all ICU families. The parents of Nikias Jones-Umina who, three months earlier, had spent five days at their 17-year-old son’s bedside before he tragically died of an epilepsy complication, also wanted to help ICU families and had set up a fundraiser which had received hundreds of donations.

Along came WeCU, a $1-million program funded by the RBWH Foundation, kickstarted with donations selflessly raised by the Leary and Jones-Umina families, aiming to change the RBWH ICU family experience by providing care, comfort and communication.

The waiting area is now partitioned into rooms for families, with comfortable furniture and tea and coffee. There’s a concierge on duty seven days a week – someone with empathy and training, ready to be a first point of contact, to help make sense of the new environment and provide an ear or a shoulder when needed.

The RBWH Foundation has bought iPads for almost every patient bed, so families everywhere can FaceTime or call in virtually, talking to their family member, or at least seeing them. Sometimes seeing your ill or injured family member awake counts for a lot. The patients, when awake, can also use the iPads.

With a plan underway for family communication with patients, the program next looked at communication between family and clinicians. Without a deliberate process in place, calls default to the nurses’ station. Lots of calls that families are entitled to make, but calls to busy staff who want to do their best and are already pulled in many directions. And what about that question that wakes you in the middle of the night, when the doctor you spoke to earlier isn’t there?

How can a connection be made when the questions and the people who might answer them have no easy way of synchronising? Through a communications portal, currently in the pilot phase. Posts from staff with updates – ‘Ethan’s just out of surgery and is doing well. Okay for visitors tomorrow.’ Midnight questions from families, posted fresh at midnight, allowing some chance of going back to sleep knowing the question doesn't have to be remembered all night. Nurses and doctors logging in between clinical commitments, answering questions. Families waking up to answers.

WeCU started with a passion to make a difference and, as Leona says, ‘evidence and passion are two very important ingredients for getting things done, but passion will only last for so long. It only will last as long as the person with the passion is around. Whereas, the evidence actually speaks for itself.’

And what does the evidence say? The concierge is now helping an average of 207 people each day. Families report feeling comforted, supported, less lost, better informed. Research also shows that supporting families has led to better patient recovery on discharge from ICU. And the prevalence of PTSD features in family members has fallen.

Leona’s friends’ daughter Alexa survived and is now thriving. Winning gold at the Paralympics. The new program she helped trigger is doing very well too.