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When Melanie and Peter arrived with their children for a three-week vacation in Australia, at Christmas in 2017, little did they know it would turn into the most difficult time of their lives. Instead of hopping on a plane back to their temporary home in Costa Rica, Central America, the holidaying Americans found themselves at The Children’s Hospital at Westmead in the Cancer Centre for Children.
Eventually, after the cancer treatment finished, the experience would enable an unexpected opportunity to provide input into planning the redevelopment of the Hospital. When their ordeal began, however, nothing could be further from their minds.
“In January, our three-year-old son, Benjamin, got ill and it turned out he had cancer,” said Melanie. “He was too unstable to travel so we sort of got stuck here on an indefinite holiday.”
While Benjamin was receiving treatment for Burkitt’s lymphoma, a type of blood cancer, his three siblings Sam, Madeleine and Alexandra were enrolled in local schools, and after his treatment was completed the family stayed while he had follow-up visits.
“We saw Benjamin had become really comfortable with the Cancer Centre, and we didn’t want to start that over again for him elsewhere,” said Melanie. “Our care team had really won our trust as well.”
With borders closed due to the pandemic, thoughts of relocation have been put on hold, but the extensive redevelopment of the Hospital, in its planning phase, is providing occasion for reflection and the opportunity to help others during their stay.
“Like a lot of parents, I think there is an instinct to want to be helpful, to want to give back, or contribute in some way. You want to do what you can to make it better for future families.”
Consumer workshops have been held allowing parents, patients and staff to provide their unique perspectives on their vision for the building. Melanie’s research and academic background could be viewed as helpful in that she worked with the United States Congress on health policy, and also worked on Obamacare, but she feels her experiences as a parent have provided the most valuable perspective on what is needed.
Spaces where families can comfortably spend time together is high on her list of desirable outcomes in the new Hospital, especially as her family has six members. “Just having enough space in a room can make life easier. We want to be together as a family and need room to do that so we’re not all crowded around.”
Interestingly, other patients and parents echoed this view during the workshops describing a need for designated areas in parts of the hospital, outside wards, where larger amounts of family and friends can gather to celebrate birthdays or just spend time together.
Opportunities for privacy in rooms are important to Melanie as well. “The plus side is you know you’re not alone and you can see someone else’s similar journey, but there are a lot of downsides too. It’s hard when your child is melting down, or your child is trying to sleep, and another person is there, or vice versa.”
Acknowledging a need for privacy is linked to the reality that often families spend enormous amounts of time in hospital with their sick child. These de facto living arrangements require access to basic needs such as food and, ideally, food preparation areas.
“We have four kids that we had to care for. One sick and the other three weren’t, but we still needed to eat when we were living in the hospital.”
Having food available within the hospital, especially for people not familiar with what is outside the premises, and practical food preparation areas which provide healthier and cheaper alternatives to vending machine options, are highly desirable. The aim is to accommodate families’ basic needs as they go through a difficult time.
“These types of things will just ease the burden to parents who are literally living there,” said Melanie.
With the redevelopment project team inviting input and listening to consumer workshops, the door is open for families to voice their needs and be part of the planning process.
“I think we need to hear from as many parents as possible, though, because my experience is unique to me and things that are important to me may not be important to other families.”
A series of coincidences that began two years ago on a wayward vacation led to Melanie being part of planning for the future of the Hospital. By sharing her ideas to help shape the redevelopment she’s making a difference to future families. The more parents who join her in doing this, the better the new hospital will be.
Join us on this journey as we plan the future and let us know what is important to you.
Visit our Building the Cancer Centre: Have your say page.
For more information email us at SCHN-Plan@health.nsw.gov.au.
Would you like to provide feedback? We’re listening and you can contact us here.