A lot is happening in this space of “Health systems strengthening” in the Pacific with a focus on Primary care and some specialties like Palliative care put aside, even ignored despite a population health status that suggests palliative care should be alongside primary care. From the perspective of a primary care clinician living and working in Samoa, I would like to share some thoughts into this space around why palliative care should be a key focus in strengthening health systems in pacific island nations like Samoa.

Members of the National Register of Palliative Care Consumers and Carers will come together in a panel discussion on the Good, the Bad and the Ugly from their lived experiences of palliative care.
All members of the group are experienced in representing the needs of consumers and carers through policy, research and service design and collectively bring a broad scope of expertise.
Those working in palliative care directly and the breadth of allied and community services associated with ensuring a holistic approach, will be able to directly hear from consumers and carers on what worked for them and what could have worked differently had they known at the time what was possible.
There will be scope for audience members to ask the questions of the group that will support improved practice and emerge a renewed recognition that every individual has unique needs and quality care includes asking every individual and family what those needs are.

This is a joint presentation from Kathy Boschen of Flinders University and Heather McMinn of National Disability Services Australia.

Kathy will present the preliminary findings of her PhD research - NDIS Participants with Psychosocial Disabilities – Investigating their formal support systems following life-limiting diagnoses. Heather will follow with a presentation of the work that NDS has been undertaking to increase disability sector understanding and capabilities to support end-of-life choices for people with a disability.

Kathy’s recent article in The Conversation, "The NDIS promises lifelong support – but what about end-of-life support for people with disability?" and scoping review NDIS Participants with Psychosocial Disabilities and Life-Limiting Diagnoses: A Scoping Review highlighted some issues with end-of-life support for NDIS participants. There appears to have been little consideration about how formal systems intend to support NDIS participants that receive life-limiting diagnoses. As people with disabilities statistically die up to 20 years sooner than average, it is essential to understand whether the current service systems can adequately support them. Kathy’s research aims to discover whether the NDIS improves or further complicates the death and dying experiences of NDIS participants. The presentation will discuss the NDIS legislation, the responsibilities of the NDIS and other service systems, our scoping review and findings from qualitative interviews with NDIS participants with psychosocial disabilities, informal and formal supports of NDIS participants, mental health and palliative care clinicians from around Australia.

Heather will share how NDS has been engaging with providers and other key stakeholders to identify how sector capabilities and understanding can be improved. The COVID-19 pandemic highlighted gaps in disability worker knowledge and understanding of people with disabilities and their choices for end-of-life care. All people, regardless of living with a disability, have a right to be informed about choices and options for all life-stage needs. This includes the right to end-of-life planning and choices including the option of electing to die at home - even if your home is a supported residential accommodation setting.

NDS participated in a Victorian working group focused on developing a palliative care awareness tool for workers. The NDS process and engagement within this tool development provided further insight into the barriers and opportunities to address these.