The complexities of care

When everything is running smoothly, the body is an amazingly efficient machine. It is something that is often taken for granted. Unfortunately, for many children, everyday biological functions like digesting a meal or going to the bathroom are extremely difficult and distressing.

In Victoria, over 50 children are born each year with complex colorectal conditions that require highly specialised, and often lifesaving, surgical treatment. As a part of the body that is not openly talked about, patients and their families can also face poor psychological outcomes associated with their conditions, including feelings of embarrassment, isolation and hopelessness.

Paediatric Colorectal Surgeon Associate Professor Sebastian King is responsible for the care of many of these children at the RCH, and knows all too well the challenges they face.

“For the majority of the kids that we look after, we are managing them from birth through their adolescence, and then transitioning them to adult care, because a large number of them are still having significant problems. It’s life-long,” said Sebastian.

Thanks to philanthropic support, Sebastian and his team have established the Complex Colorectal Service (CCS) to ensure consistent and exceptional care for this unique group of patients and their families. The CCS coordinates a small group of surgeons and specialists across departments to streamline hospital experiences. Leading the expansion of the service, Sebastian has selected two Clinical Nurse Consultants, Suzie Jackson-Fleurus and Jessica Taranto, who will establish the foundations of the service as it continues to grow, bringing his vision of holistic care to life.

“What is really exciting is that there is no service like this within the RCH and there are no paediatric complex colorectal services in Australia. This is really cutting-edge, holistic care that we’re providing and we get to build the service from scratch which is an opportunity that wouldn’t come along very often in a nursing career,” said Jessica.

The clinical nurse consultants’ role will encompass all aspects of the patients’ experience, managing and supporting them on their journey as an inpatients, as well as in the community as an outpatient. Once the CCS systems are established, Suzie and Jessica will turn their focus to building awareness for the complex conditions, through education in the wider community.

Family centred care will be at the heart of the CCS model. Suzie and Jessica hope to collaborate as much as possible with parents, acting as a point of contact at any time for questions or concerns the family faces.

“I don’t think we can underestimate the impact of something as simple as a written fact sheet. Information specific to a child’s complex colorectal condition, treatment and how their journey will look from diagnosis to transition will be fundamental in providing family centred care,” said Suzie.

With an acute awareness of the poor quality of life outcomes for his patients, Sebastian wanted to incorporate psychology and social work support into the CCS care model.

Removing the stigma surrounding complex colorectal conditions, easing anxieties, and promoting the mental wellbeing of children and their parents will be a major priority of the CCS as it develops.

Sebastian, Suzie and Jessica are a passionate unit with a shared dream for the CCS to have far reaching impacts beyond the RCH.

“That’s how I envision this service, providing holistic support by incorporating both a nursing and psycho-social perspective, and becoming a framework for other groups to model themselves upon,” said Sebastian.

The growth of the service would not be possible without the generous support of donors, who have recognised the life-changing prospects of the CCS under the leadership of Sebastian.

“The result of all this giving is that we have created a community of people from many different backgrounds who are supporting a common goal – improved care and outcomes for kids with complex colorectal conditions. It’s exciting that donors recognise that it is not a glamorous area, but one that is worth supporting,” said Sebastian.