An innovative new process, apheresis involves the filtering and removal of blood components meaning that seriously ill children can receive potentially life saving care.
Apheresis can be used to assist with the care of patients across the hospital, including those undergoing stem cell transplants, sickle cell disease and leukaemia treatment, and to assist with the management of organ rejection or dysfunction following transplantation.
Apheresis provides critically ill children access to both standard and new innovative and cutting edge treatments, offering those with previously incurable cancers and established therapy to battle the disease.
Thanks to the Good Friday Appeal, the ability to access on-demand apheresis therapies will also mean that acutely ill children, for example those at risk of strong and multi-organ failure, can receive this life-saving emergency care.
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RAPID Model of Care
With over 86,140 patients in 2017-18, the RCH ED responds to a range of complex clinical situations and often responds to the State’s biggest emergencies. Through support from the Good Friday Appeal, the ED is trialling a new model of care. The Rapid Assessment, Planning, Investigations and Discharge (RAPID) program is designed to support senior staff and streamline care by initiating consultations in the waiting room.
This pilot program will see the RAPID team, comprised of a paediatric emergency physician as team leader, nurse practitioner, junior doctor and nurse, initiate consults and care plans in the waiting room of the ED, to streamline communications and patient care. The program aims to reduce patient wait times, enhance patient access and improve communication with families.
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Clinical Nutrition Service
Poor nutritional status can lead to an increased risk of surgical complications, prolonged stays in hospital and increased mortality.
With a larger team including a consultant, nurse consultant and pharmacist, the Nutrition Service will grow their dedication to the treatment and care of patients who are receiving nutrition intravenously, and look to establish the Intestinal Rehabilitation and Clinical Nutrition Service as a nationally recognised Centre of Excellence for the care of children and adolescents with complex nutrition problems.
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The RCH Childhood Stroke Program
Bailey spent 11 days in intensive care and the family was referred to The Royal Children’s Hospital’s Childhood Stroke Program where Dr Mark Mackay “made everything less daunting”.
Belinda said Dr Mackay “explained things in a way that made us more relaxed and gave us hope”.
As the twins approach their second birthday it is mainly physical differences that mark their development. Bailey has been diagnosed with cerebral palsy which affects his walking and some movement on one side of his body. He also has some vision problems.
Although Bailey does need constant extra supervision, nothing stops the rough and tumble of daily toddler life for the twins. And the family’s on-going association with the Childhood Stroke Program provides peace of mind with help and advice whenever issues rise.
Mum, Natalie Reynolds, with Bailey, and dad, Tim Clarkson with the Beau.
The program is an international leader in childhood stroke care and research. Dr Mackay said it is the third largest contributor of data to the International Stroke Study Group’s registry that involves 88 centres worldwide. The RCH is the only Australian paediatric institution that meets all National Stroke Foundation criteria for a comprehensive stroke centre.
“We know (from feedback) that we are having a direct and positive impact on the families we see, but through our research we are also having a huge impact internationally,” Dr Mackay said. “This research translates into helping many other people too.”
Funded by the Good Friday Appeal, the program was set up in 2004 by Dr Mackay, a paediatric neurologist. In 2011, also due to the support of the appeal, the nation’s only Stroke Nurse Coordinator, Belinda Stojanovski, was employed.
The pair work seamlessly together to improve the outcomes for children affected by stroke, providing medical, practical and emotional support for the young patients and their families.
“When families are referred to our clinic Mark gives them all the technical information then I step in to try to answer their questions and provide the support they need to deal with the different hospital departments and link them into rehab,” Belinda said. “We are really the link between the families and the hospital.”
In 2012 the Childhood Stroke Program had 13 referrals but that had increased significantly to 41 in 2016. There are about 400 families on the program’s registry.
The program also aims to improve care by educating medical, nursing and allied health professionals in best practices; and to improve awareness of childhood stroke in the community.
Paediatric stroke facts:
Stroke is among the top 10 causes of death in childhood with the highest mortality in the first 12 months of life
Stroke affects one in 2300-5000 newborns
The cause of stroke in newborns is usually unknown
Every year about two children in every 100,000 will have a stroke
50-85% of survivors of stroke will be left with long term problems which may include seizures, physical disability, speech or learning difficulties
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Supporting Patients with Intellectual Disability and/or Autism Spectrum Disorder
Eventually these patients must make the transition from hospital care to adult healthcare and thanks to Good Friday Appeal support, the hospital is developing an appropriate and sustainable model of care for this transition.
This will provide a supportive framework, ensure timely transition from The Royal Children’s Hospital, and improve patient and family outcomes in partnership with external healthcare providers across Victoria.
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Complex Care Service
These children require multiple specialists and services involved in their treatment, which can be extremely challenging for families to coordinate and manage. With the new Royal Children’s Hospital (RCH) Complex Care Service, this is changing.
The RCH Complex Care Service is a new way of working, created, piloted and evaluated in 2014/15, to better support complex patients and their families.
The complex care team believes that the most successful care comes from partnership, which is why there is now a specific team dedicated to working with complex patients and their families.
By offering additional support, the needs of the patient and their family can be better managed and the impact of the child’s illness on the family is lessened.
The dedicated team, consisting of a Clinical Nurse Consultant (CNC), a doctor, an administration assistant and a social worker, work closely with the family to understand their needs and develop care and emergency plans to meet them.
“The CNC, acts as a single point of contact for the family, providing 24/7 access to advice and support liaising with all the child’s health care providers, both inside and outside of the hospital. This not only takes pressure off the family to coordinate the child’s treatment, but results in improved coordination of care as all of the patient’s health professionals are kept informed, enabling a holistic approach to the child’s care,” says Nicki Mountford, RCH Clinical Nurse Consultant.
The team help the family to better navigate the hospital system in any way they can. Whether this is by coordinating their appointments, helping to connect the family with community supports, or by providing advice or answers to any questions they have, The Royal Children’s Hospital Complex Care team is keen to support the family in any way possible.
“This increased level of support and coordination for the families means that they are attending The Royal Children’s Hospital less frequently and spending more time enjoying life outside of the hospital.”
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Wadja Health Service
The team runs regular clinics with both paediatricians and Aboriginal Case Managers to deliver holistic care that incorporates Aboriginal and Torres Strait Islander patient’s medical, social, cultural and emotional needs.
Wadja Manager Selena White said Wadja Health Clinic has played a significant role in delivering the best health outcomes for children and families at the RCH.
“When Wadja commenced in 2009, our paediatricians saw three patients in its first month of service, and this has now significantly grown to between 28 – 38 patients a month,” Selena said.
“Last year, our Wadja Case Managers supported more than 300 patients and families with attendance, cultural support and safety throughout clinic consultations.
“Wadja was a new model of care for paediatric health, so it’s great we’ve had such positive feedback from families – knowing our Koori community value our service is very rewarding.”
In 2017, the clinic implemented an enhanced model of care for Aboriginal patients who fail to attend outpatient appointments, to identify and address barriers to accessing health services.
“I’m very proud of how the team has worked together to develop our service to improve the overall health of Aboriginal and Torres Strait Islander children,” Selena said.
“Together we have built trusting relationships with families, formed partnerships with Aboriginal Community Controlled Organisations, and collaborated with many other RCH teams – including Social Work – Vulnerable Children, Mental Health and the Education Institute – who are all very much involved in service delivery and care co-ordination of Aboriginal patients’ who attend our clinic.”
During the COVID- 19 response this year, Wadja Health Clinic clinicians have adapted the outpatient service model to Telehealth to ensure Aboriginal patients and families have ongoing access to the service.
“Many of our families have welcomed consultations via the Telehealth platform and we plan to maintain this option where clinically appropriate post COVID-19,” Selena said.
Despite the COVID-19 limitations, the Wadja team has seen an increase in presentations over the past twelve months, providing care to 3,612 Aboriginal and Torres Strait Islander children and their families during the 2019-20 financial year.
Since its establishment, Wadja has significantly enhanced the experience of Aboriginal and Torres Strait Islander patients at the RCH.
“Wadja is a leading model of care for indigenous child health, and what the team has achieved over the past 10 years has been fantastic,” Selena said.
“Of course, this is something we want to keep building on, so we’re looking for opportunities to improve the effectiveness of our service and ensure we have a comprehensive approach to meeting the needs of our patients and families.”
“We’re also looking to enhance our physical environment, to reflect the traditional owners of the land, and we’re working on strengthening relationships between the RCH and the Aboriginal community by increasing engagement with Aboriginal organisations, Aboriginal elders and community members.”
