"Lack of compassion and knowledge"

Due to our child’s medical history, our family has had extensive exposure to hospital environments and paediatric care over the past few years. We understand how busy and demanding hospital wards can be, and we truly appreciate the work healthcare staff do every day. Because of this experience, we also recognise the difference compassionate, knowledgeable, and communicative care can make to families during difficult admissions.

Returning to Kununurra after being under the care of the paediatric team in Broome was incredibly challenging for us emotionally. Unfortunately, during this admission, I often felt that we were not met with the same level of care, communication, or engagement. At times, it felt as though many of the nursing staff were task-focused rather than patient-focused, with little effort made to connect with either us or our child during observations and interactions.

As our baby is not yet verbal, communication naturally relies heavily on the adults around them taking the time to explain what is happening, speak to them directly, and include us in the process. We often felt that observations and assessments were completed with minimal communication towards them or towards us as parents. While our baby may not yet be able to respond verbally, they are still aware of the environment around them, and those moments of connection and reassurance matter greatly.

We also found it concerning how frequently nurses stated they needed to find someone else to adjust settings or change things on the monitors because they did not know how to do it or were unsure whether it was possible. In several cases, these were functions we already knew were possible from our previous admissions and experiences and we knew how to do ourselves. Given how significant these monitors are in patient care and safety, it was unsettling to feel there was uncertainty around equipment that appears to be used so routinely.

Another significant concern was the management of our baby’s inhaler plan. During our admission in Broome, the plan had been to gradually extend the time between inhalers as they improved. However, once transferred back to Kununurra, staff were very insistent that our baby's inhalers remain every three hours, with no discussion around extending them. When I asked when the spacing plan would begin, I was told that the nurses were not qualified to make those decisions. I completely understand and respect that the staff may not be paediatric trained, however this then raises concerns for us about whether it was appropriate for our baby to be transferred back before their care could be managed confidently within the ward’s scope and experience.

As parents, this created a significant amount of anxiety for us. We moved back to Kununurra during the admission so our family could all be together in one place, however the experience left us feeling that we did not have staff around us who fully understood our baby’s care needs or who had the confidence and knowledge to manage them appropriately. At this stage, I believe that in future admissions we would likely choose to complete our child’s care in Broome rather than transfer back, despite the strain this places on our family.