A life limiting condition is defined as one where a child will not live to the age of 18. Supports that are provided to the family are focused on quality of life and include pain and symptom management, practical support (e.g. equipment needs), care co-ordination, emotional and spiritual support and after hours telephone support.
In 2014, Children’s Health Queensland Hospital and Health Service (CHQ HHS) put in a submission to receive a grant from the Department of Health (Commonwealth). This was in relation to initiatives in education and quality improvement in palliative care (not service delivery). A requirement of the funding was that there would be a presence of the project in each state and territory of Australia. The PPCS collaborated with the other children’s hospitals in Australia (through the Australian and New Zealand Paediatric Palliative Care Reference group - ANZPPCRG) to put in a submission as a collaborative with CHQ HHS being the project lead.
The funding is time limited and not recurrent and will finish in June 2017. Keeping this in mind, it was felt that intensive educational activities on a state wide level would be most valuable. This would increase the capacity of health professionals in providing palliative care for children in their local community. There would also be benefits in collaboration between different sectors of service provision (e.g. health, education, disability services, non-government sector) and opportunities for consumer engagement. It is hoped that a suite of educational resources will be available on the internet at the end of the project.
'Pop-up' visits have been successfully piloted in New South Wales. ‘Pop-up’ education usually occurs (via face-face or telehealth interaction) when a specialist service is building capacity within a child and family’s local community. The education provided can be specific to symptom management, end of life care, physical aspects of patient care according to their individualised need and diagnosis, and psychosocial needs. This can be provided several times over a specified period in order to build capacity and confidence for the local services to effectively care for the child and as the needs of the child changes. Pop up occasions provide ‘In time training’ and more specific education as the child’s care needs change throughout their illness trajectory.
The project will provide funding of approximately 1.1 million per annum over 2 years to provide these educational and quality initiatives. Outcomes of the project will include undertaking 19 'pop-up' education sessions per year, as well as 16 'scheduled' education sessions per year on a national level (with education occurring in each state and territory of Australia). Participants’ knowledge and confidence in providing palliative care will also be measured. We hope the data provided can be published.
Funding will go towards supporting the visits to regional, rural and remote locations. There will also be nurse educators employed in Queensland, Victoria, South Australia and Victoria. Queensland and New South Wales will also employ paediatric medical fellows. This will allow more paediatricians (and adult focused palliative care specialists) to receive training in children’s palliative care, and also to increase the capacity of the doctors working within the teams to provide education.
It is anticipated that education will also be provided through in-service and incidental opportunities for education (e.g. at multi-disciplinary meetings and handover meetings). An allied health professional will be based in Queensland to ensure the integral role of allied health professionals within children’s palliative care is present within the educational initiatives.
This is the first time the ANZPPCRG have received national co-ordinated funding to try and address the issues related to children’s palliative care - particularly for those families who are living in regional and rural communities. The aim is to provide support as close to the child’s home as possible. There is opportunity to increase capacity for children’s palliative care at a number of levels within each state and territory of Australia (e.g. better networking and collaboration). This collaboration will also occur between states. It shows prioritisation from the Commonwealth government, that the palliative care needs of children and young people need to be addressed.
Dr Anthony Herbert
Last updated 17 January 2017