Tailoring the Patient Experience

A patient's experience is based on a series of moments. It starts with the moment they walk through our doors and continues to the moment they first interact with a staff member, to the moment they receive their medical care, right through to the moment they take some time to themselves.

Regardless of how big or small, each of these moments matter and it is our job to make sure that these experiences are the very best they can be.

This week, from 22 - 26 April, our Network is celebrating Patient Experience Week (PEX) and our commitment to improving the experience for all patients and families cared for in our inpatient and outpatient services.

PEX Week, an initiative of the Beryl Institute, recognises a positive patient experience contributes to better health outcomes and has been the driving force behind some of the key improvements across The Children's Hospital at Westmead and Sydney Children's Hospital, Randwick over the past year.

These include changes to patient care, family empowerment and infrastructure (read more below).

To learn more about Patient Experience Week and how we are improving, visit our webpage.

Improving patient care

Fourteen-year-old Tobias considers the nurses and doctors more like family than staff. They remember his birthday, organise special treats and he can talk to them about anything - all things that go above and beyond the normal call of duty.

Diagnosed with Cystic Fibrosis at four-months-old, Tobias has been receiving treatment at The Children's Hospital at Westmead for most of his life. His care has involved countless outpatient appointments and several longer term admissions. This, on its own, may sound tough but over this time, Tobias has also built some incredibly strong connections with his medical team that have helped make his journey a little bit easier.

"I remember one time when I was in hospital, I saw my dietician, Andrea, and she told me I could order whatever I wanted because kids with Cystic Fibrosis don't have the same menu as other kids. I ordered a cake but it didn't come. When Andrea found out, she went out and got me a cake. Things like this make you feel really special," Tobias said.

The biggest improvement to Tobias' care recently has been the transition to the Network's Hospital in the Home program, which now allows his treatment to be provided locally and eliminates the need for him to visit Westmead as regularly. With less time spent in hospital, Tobias can spend more time at school and enjoying the things he loves, like playing soccer.

Other aspects of Tobias’ care which have improved his overall experience include continuous care from the same specialist, Dr Hiran Selvadurai, the opportunity to take part in a two-year clinical trial which has so far (in the first six month) proven to improve Tobias’ health indicators such as increased lung function, and healthy weight and height gain.  

"Dr Selvadurai has been Tobias’s doctor from his first visit and has always been involved in every part of Tobias' care - we trust him with his life. 

"The changes to his care have been great because it is focused on keeping him out of hospital and keeping him well," Tobias' mum, Madeline said.

Focus on families and carers

“Asking ourselves how we can continue to improve their experience and learn from them is something we should ask ourselves before every interaction and at every opportunity.”

Nadine Griffiths is a Neonatal Clinical Nurse Consultant in the Grace Centre for Newborn Intensive Care at The Children's Hospital at Westmead. Since 2006, she has dedicated her career to caring for critically ill babies and their families and has played an instrumental role in shifting the focus of care from the condition to a family-centred approach.

This shift has seen the Grace Centre establish itself as the first NIDCAP (Newborn Individualised Development Care and Assessment Program) Training Centre in Australiasia, providing a training ground to bring staff in neonatal intensive care units across the country up to speed in this revolutionary model of care for sick and premature babies.

The program is the only comprehensive, family-centred, evidence-based approach to newborn developmental care. It focuses on adapting the newborn intensive care nursery to the unique needs of individual patients through reducing some of the stressful effects of the environment and medical procedures (such as bright lights, cold temperatures, loud sounds, pain and discomfort). This includes simple strategies like dimming lights, minimising noise and maximising skin-to-skin contact.

"Placing families at the centre of quality improvement activities, research, staff training, clinical guidelines, practice initiatives and all that we do in the neonatal unit is the key to our success. We are responsible for what families achieve during their journey and beyond the neonatal unit," Nadine said.

In her own words, Nadine's key lessons 'lived' through her work are:

  • My job is to advocate for you and your family on a journey that is uniquely yours
  • We all have work to do, this is not about perfection
  • Little things to me, might mean everything to you
  • Not every family wants or needs the same thing, they should all be offered the same opportunities and respect
  • Celebrate everything - the big, the little, the in-between - because life is too short
  • You - the mum, the dad, the baby, can teach me - the healthcare professional
  • These babies in this place are always yours, my job is to support you in an environment that is unfamiliar and often unimagined
  • We all have good and bad days, we can be at our best or our worst. Tomorrow is another opportunity to try again
  • Saying 'I am sorry this is terrible', means more than trying to justify something
  • Perspective is everything and we are all coming from a different direction
  • Telling a family to take a break and get some rest doesn’t help them. Getting a comfortable chair, a glass of water or cup of tea and a blanket not asking them to go anywhere means more
  • It is rare to be untouched and unaffected in the neonatal unit as either a parent or staff member. We all carry different pieces of our journeys or those journeys we have witnessed with us – what we see changes us.

Nadine’s approach to patient care has impacted hundreds of babies and families and now as the first certified NIDCAP trainer in Australasia, will continue to help hundreds more nationwide.

Infrastructure upgrades

Patients, their families and staff at Sydney Children’s Hospital, Randwick, have recently benefited from an extensive refurbishment and expansion of the oncology inpatient ward, C2North.

Officially reopening in March 2019, parents, carers, patients and staff were actively involved in transforming the former C2North (and parts of C2West).

The refurbishment includes; 

  • Improved clinical and family spaces
  • A dedicated personalized medicine room to process and store samples for the Zero Childhood Cancer initiative
  • Additional isolation and treatment spaces
  • Enhanced staff facilities and
  • Larger waiting areas;

Everyone involved in using and providing the oncology services are loving the new space, which allows our teams to continue to provide the best care.

These improvements were made possible with $4.2 million in funding from the Federal Government’s Department of Health as part of the Zero Childhood Cancer initiative.