9. Developing the Strategy
Developing the Strategy
Who we consulted
People with a life-limiting illness, their families and carers, clinicians, peak bodies, advocates, and the palliative care sector told us what they want for palliative and end-of-life care services, now and into the future.
Building on feedback received through the Review and Inquiry, we developed principles and goals, which align to the National Strategy and the previous Statewide strategy for end-of-life care 2015.
We invited stakeholders to participate in consultation opportunities, including workshops, targeted consultation sessions, Kitchen Table Discussions and Yarning Circles, or to provide feedback through email or a survey. We sought feedback on the proposed principles and goals, initiatives that were working well, and ideas about potential actions that could be included in the Strategy.
We heard from a wide range of stakeholders from across Queensland, including clinical and non-clinical representatives from the Queensland Hospital and Health Services, private clinicians, Primary Health Networks, Palliative Care Queensland and other peak bodies, training organisations, industrial unions, and consumers and carers.
We consulted:
* 142 consumers and carers across 14 towns and cities, including rural and remote areas, through Kitchen Table Discussions and Yarning Circles, facilitated by Health Consumers Queensland
* Queensland Health staff, including specialist palliative care clinicians, and nurses, physicians, and allied health practitioners, through multiple meetings with the 16 Hospital and Health Services and an internal survey
* Clinicians, nurses, allied health staff and consumer representatives through four workshops
* 49 representatives from 39 different non-government organisations, including palliative care service providers, peak bodies, Primary Health Networks, national peak bodies and aged and disease specific peak bodies related to palliative care facilitated by Palliative Care Queensland.
We also held:
* Meetings with Queensland Health staff about the current workforce for palliative care, local workforce priorities and the development of the Workforce Plan.
* A workshop focused on principles of good practice and models of care for designing and delivering First Nations led culturally safe community-based palliative and end-of-life care for First Nations peoples.
What we heard
The contributions from consumers and carers, the community, sector, and clinicians throughout the consultation process was invaluable. The information we received through the consultation process directly informed the actions and strategic directions contained in the Strategy and will also be used as a basis to enhance the palliative care system beyond the life of the Strategy. People told us what good palliative care should look like and how we must deliver essential change across the palliative care system in Queensland.
We collected and analysed a vast amount of feedback during our consultation activities and identified eight key themes that emerged during the process. These themes were:
* Bereavement support is a key aspect of care and should be provided from the time a person receives a diagnosis and during the provision of quality palliative and end-of-life care.
* Information needs to be timely and provided to patients, their families and carers at the right time.
* Compassion is a key aspect of palliative care and needs to be reflected across the principles and goals.
* Governance and accountability for the Strategy needs to be clearly articulated to ensure oversight of its implementation and monitoring.
* The importance of carers, families and other loved ones needs to be clearly outlined in the Strategy.
* There is a need for new investment and better ways to allocate funding and investment to fill gaps and strengthen service delivery.
* Growth, training and support for a multidisciplinary workforce that can cater to people’s needs, including cultural and spiritual needs, is necessary.
* Awareness and education about the benefits of Advance Care Planning is required to safeguard individuals’ preferences at the end of life.
"Increasing specialist palliative care workforce ensures skilled clinicians can support the generalist population but also deliver high-quality palliative care that meets people's needs." Queensland Health survey response.
"Support for carers is also very high on the list, as in my experience, the carers’ needs are two-fold, during the end-of-life process, then the bereavement stage after. There are still fairly significant gaps for this support, especially for those who don’t even know where to start looking. And the information isn’t readily available." Consumer, Kitchen Table Discussion, Cairns.
"There is a need for recurrent funding for current models that are working well, such as PallConsult, Specialist Palliative Rural Telehealth Service, Paediatric Palliative Care Collaborative for sustainability." Participant, Queensland Palliative Care Clinical Network Steering Committee engagement session.
"There is an opportunity to review programs funded by the state to identify duplications, roles and responsibilities and what can be improved at a statewide basis and how investment can be allocated more efficiently." Participant, Queensland Specialist Palliative Care Services Directors’ Group.
"It is important to recognise that bereavement support is a fundamental part of end-of-life care and supporting families and carers following the passing of a loved one." Participant, Care at End of Life Collaborative engagement session.
"There is a need for staff training and education … all health and support staff [need to] understand palliative and end-of-life care, compassionate care, and culturally appropriate care." Participant, Queensland Palliative Care Clinical Network Steering Committee engagement session.
"There needs to be staff who have connections with our mob while in hospital, so we need to make sure that Aboriginal and Torres Strait Islander Liaison Officers are present. Need adequate staff numbers." Consumer, Yarning Circle, Hervey Bay.
"The Medical Aids Subsidy Scheme Palliative Care Equipment Program is amazing and now assists patients to be loaned the appropriate equipment … It is much easier for the families." Queensland Health survey response.