Learnings from 15 years of shared care in paediatric palliative care, oncology and haematology
An article written by Penny Slater
The Queensland Paediatric Palliative care, Haematology and Oncology Network (QPPHON) recently celebrated 15 years of statewide shared care with the Regional Case Managers (RCMs) and their support staff. [1] This achievement prompted them to reflect on their learnings over that time that had enabled them to provide safe and high quality care to patients and families as close to their home as possible, including low risk chemotherapy and supportive care.
Children in Queensland who are diagnosed with cancer or a serious haematological disorder, and those who require palliative care, have their treatment planned and delivered at the tertiary hospital (now the Queensland Children’s Hospital). When appropriate, care closer to home is coordinated by RCMs established at 10 Shared Care Units in hospitals at Cairns, Townsville, Mackay, Rockhampton, Bundaberg, Hervey Bay, Sunshine Coast, Toowoomba, Logan and Gold Coast.
Shared care benefits both the children and families, allowing them to maintain the family unit closer to their support networks in a familiar environment. It gives the family some normality and helps with the child’s transition back to school and the social environment. The financial burden on families is reduced and it improves job security. These benefits have a flow on effect for the quality of life for the whole family.
The RCMs advocate for the small but complex cohort of paediatric patients within hospitals that are predominantly focused on adult care, addressing the specific healthcare rights of children, the principles of family centred care and specialised service provision.
RCMs are instrumental in building the trust of families to receive regional care. They ensure all aspects of treatment are carried out in a safe and timely manner. Videoconferences between the family, the regional team and tertiary centre before the child is discharged home, assists in building family trust and confidence and enables continuity of care.
Shared care is supported by the QPPHON statewide network supporting clinical governance, network management, standards of care, quality improvement projects, research, advocacy, professional development and education. QPPHON coordinates education at the regional hospitals and the tertiary centre, clinical placements, credentialing, and conference attendance. The annual QPPHON funded RCM Workshop at the tertiary centre develops a supportive RCM network who meet online regularly. The RCMs in turn, educate and support the multidisciplinary team in their hospital, including emergency departments and paediatric wards, as well as community services and staff in hospitals local to where patients live.
RCMs facilitate communication and information sharing with the tertiary centre through regular reporting, meetings and documentation in statewide electronic chemotherapy prescribing and patient record systems.
They also support regular Outreach Clinics, attended by tertiary centre consultants and nurse care coordinators, and are involved in QPPHON consumer engagement activities.
RCMs are experienced nurses who demonstrate clinical competence, passion, flexibility, patience, persistence, leadership, collaboration and good communication. Most work part-time and have experienced increases in patient referrals and complexity, as well as patients coming home earlier in the treatment protocol. Five had lodged successful business cases to increase their work hours from the original allocation.
RCMs are part of a multidisciplinary team that includes a Lead Paediatrician and other medical staff, nursing staff and various allied health roles. They value having a paediatric team that works well together and understands the needs of the patients.
The RCM role provides invaluable clinical leadership for the network of care for paediatric oncology, haematology and palliative patients across Queensland. As new treatments evolve, the expertise and coordination provided by the RCMs will be even more critical. Achieving high-quality shared care outcomes is underpinned by the RCM’s drive for statewide safety and support for this cohort of children and their families.
References
1. Slater P, Hastings Y, Nicholson J, Noyes M, Benitez L, Pollock K, Peacock R, Cox A, Gunning R, Caris K, Petersen D, Henry C, Spanner R, Beckett K, Chisholm C. Fifteen years of shared care for paediatric oncology, haematology and palliative patients across Queensland: The role of Regional Case Managers. Aust J Rural Health. 2022 Dec 28. doi: 10.1111/ajr.12958. Epub ahead of print.
Useful links
Children’s Health Queensland Hospital and Health Service - Oncology
Children’s Health Queensland Hospital and Health Service - Haematology and Haemophilia
Children’s Health Queensland Hospital and Health Service - Paediatric Palliative Care Service
Quality of Care Collaborative Australia (QuoCCA)
Penny Slater
Program Manager
Queensland Children’s Hospital