SA Health Palliative Care Project

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We are developing a new and innovative Palliative Care Services Plan and Model of Care Framework for South Australia and we would like your input.

What's being decided?

We are seeking input from the South Australian public and palliative care stakeholders to ensure that the new Palliative Care Services Plan and Model of Care Framework can meet the needs of our community and support us to deliver on the vision of the Palliative Care Strategic Framework 2022-2027.

All South Australians, their families and carers have access to and receive the best possible end of life and palliative care that places the person at the centre of care and supports them to live and die well in accordance with their individual needs, wishes, values and preferences.”

Background

What has been done so far?

South Australia’s Palliative Care Strategic Framework was launched in December 2021 and contained:

  • a vision and goals for the palliative care service system in South Australia
  • four priority areas
  • specific actions that we will commit to over the next 5 years to shape the palliative care system so that more people can die well in South Australia

Key deliverables identified in South Australia’s Palliative Care Strategic Framework 2022-2027 are a statewide Services Plan and Model of Care Framework which will inform improvements and investment in SA Health administered palliative care services over the next five years. This will deliver best practice holistic and high quality services, with equitable and easy access for all palliative care consumers.

One of the first steps in this work, was to better understand current palliative care service delivery and access across SA, including any opportunities for improvement. The SA Specialist Palliative Care Current State Analysis was completed in March 2023, informed by contributions and stories posted on this YourSAy page by the South Australian public, review of published documentation, data analysis, stakeholder interviews, and a series of case study discussions with ten palliative care consumers and/or their families and carers.

The Current State Analysis Key Findings and Recommendations will soon be made available.

The analysis reveals that within South Australia we have a palliative care system that is dedicated to delivering high quality services and high-quality outcomes for South Australians with life-limiting illnesses. However, clear deficiencies in equity, challenges in accessing elements of the system, an ageing and under-resourced workforce, data related limitations and piecemeal funding have a significant impact on consumer and clinician experience.

What is happening now?

We are developing an action plan to address the recommendations of the South Australian Specialist Palliative Care Current State Analysis.

This will be developed in consultation with the Statewide Palliative Care Clinical Network, and endorsed by the Project Board, for commencement in late-2023.

In addition to findings and recommendations of the Current State Analysis, the action plan and future directions will continue to be strongly informed by the narratives and experiences of South Australia’s palliative care consumers as sourced through the project’s consumer engagement processes including this YourSAy page.

What are the next steps?

This page will be updated as future opportunities for engagement arise. However, if you are interested in providing more direct input or if you have any questions, please contact Lorraine Scorsonelli, Project Manager, at lorraine.scorsonelli@sa.gov.au.

More information on palliative care

If you would like to know about current palliative care services in South Australia please go to the SA Health website or visit Palliative Care SA.

We are developing a new and innovative Palliative Care Services Plan and Model of Care Framework for South Australia and we would like your input.

What's being decided?

We are seeking input from the South Australian public and palliative care stakeholders to ensure that the new Palliative Care Services Plan and Model of Care Framework can meet the needs of our community and support us to deliver on the vision of the Palliative Care Strategic Framework 2022-2027.

All South Australians, their families and carers have access to and receive the best possible end of life and palliative care that places the person at the centre of care and supports them to live and die well in accordance with their individual needs, wishes, values and preferences.”

Background

What has been done so far?

South Australia’s Palliative Care Strategic Framework was launched in December 2021 and contained:

  • a vision and goals for the palliative care service system in South Australia
  • four priority areas
  • specific actions that we will commit to over the next 5 years to shape the palliative care system so that more people can die well in South Australia

Key deliverables identified in South Australia’s Palliative Care Strategic Framework 2022-2027 are a statewide Services Plan and Model of Care Framework which will inform improvements and investment in SA Health administered palliative care services over the next five years. This will deliver best practice holistic and high quality services, with equitable and easy access for all palliative care consumers.

One of the first steps in this work, was to better understand current palliative care service delivery and access across SA, including any opportunities for improvement. The SA Specialist Palliative Care Current State Analysis was completed in March 2023, informed by contributions and stories posted on this YourSAy page by the South Australian public, review of published documentation, data analysis, stakeholder interviews, and a series of case study discussions with ten palliative care consumers and/or their families and carers.

The Current State Analysis Key Findings and Recommendations will soon be made available.

The analysis reveals that within South Australia we have a palliative care system that is dedicated to delivering high quality services and high-quality outcomes for South Australians with life-limiting illnesses. However, clear deficiencies in equity, challenges in accessing elements of the system, an ageing and under-resourced workforce, data related limitations and piecemeal funding have a significant impact on consumer and clinician experience.

What is happening now?

We are developing an action plan to address the recommendations of the South Australian Specialist Palliative Care Current State Analysis.

This will be developed in consultation with the Statewide Palliative Care Clinical Network, and endorsed by the Project Board, for commencement in late-2023.

In addition to findings and recommendations of the Current State Analysis, the action plan and future directions will continue to be strongly informed by the narratives and experiences of South Australia’s palliative care consumers as sourced through the project’s consumer engagement processes including this YourSAy page.

What are the next steps?

This page will be updated as future opportunities for engagement arise. However, if you are interested in providing more direct input or if you have any questions, please contact Lorraine Scorsonelli, Project Manager, at lorraine.scorsonelli@sa.gov.au.

More information on palliative care

If you would like to know about current palliative care services in South Australia please go to the SA Health website or visit Palliative Care SA.

Share your story

Please use this space to share the stories of your experiences with the palliative care system. 

Please outline within your story whether you are a: 

  • person with a life limiting illness,
  • family member or friend
  • paid carer,
  • clinician, or
  • other

Your story will help us to build an understanding of the perspectives of the public and the experiences being had.

Please remember to remain respectful and do not include any information that may compromise the privacy of yourself or another.

Thank you for sharing your story with us.
CLOSED: This discussion has concluded.

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    Dementia Australia's feedback

    by EmilieA, 4 months ago

    Thank you for the opportunity to provide input to the development of the Palliative Care Services Plan and Model of Care.

    Dementia is a terminal illness, with a trajectory of steady and gradual decline over a number of years. Comprehensive palliative care for people living with dementia should be available when and where it is needed, including in community or home-based care, residential aged care, hospice care, and acute care settings.

    People living with dementia, and their carers and families as appropriate, should be involved as early as possible in decision making around the delivery of palliative care. A flexible... Continue reading

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    Finding it hard to access palliative care

    by Younger with terminal illness , 5 months ago
    I have been really disappointed that it has been so hard to find practical help at home as a younger person with terminal cancer in my 40’s. I’ve been told by more than one professional that if I was over 65 there would be no problem finding me help. I have been told I am ineligible for pallative care because it is the chemo making me so sick, not the cancer, even though I am dangerously ill alone at home after chemo for at least a week. I have ended up needing to call ambulances and end up in ED... Continue reading
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    Mum's story of getting no palliative care when she desperately needed it.

    by Susan Belperio, 5 months ago

    My Mum recently passed away in an aged care (in Qld). She entered aged care almost 3 years prior to her death from from complications of advanced dementia, most likely Lewy body Dementia. She was almost completely bed bound for this entire time, and had suffered from crippling, painful and deformative arthritis. She also suffered from frequent distressing visual hallucinations, and her lucidity fluctuated. Shortly after entry into care, a geriatrician visited and assessed her, and he recommended that a low dose infusion (of pain killer and mild sedative) be commenced to reduce her pain and decrease the anxiety surrounding... Continue reading

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    Dignitas here I come

    by Heather F, 5 months ago
    Watching my mother die of Parkinson's Disease Dementia, I want euthenasia for dementia - for euthenasia to be much more freely available. I'm heading to Dignitas if I get dementia, and I have two medical conditions both with an increased likelihood of dementia. I've also studied and got HDs in dementia care at uni, theoretically that should have made me positive about dementia - only made me more convinced that euthenasia is infinitely preferable. While the government is sacrificing healthcare for submarines, ... Until the government is prepared to spend big bucks on our atrocious public health system, the dying... Continue reading
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    Mrs

    by Lorraine Rayner, 5 months ago
    Had in laws in care
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    The not so good death

    by Stacey Struck, 6 months ago
    In 2019, my 59 year old mother passed away from her third bout of cancer in her spine. She had been diagnosed with breast cancer a few years before that and then brain cancer, and finally succumbed to spinal cancer. It was honestly the most difficult thing to watch your loved one struggle along for two weeks. Thinking is she finally dead!? And then her breathing would kick back in. It has been the most emotionally and mentally scarring thing to go through. This went on for a week. We sat at my mums bedside for 31 hours straight waiting... Continue reading
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    The best Palliative Care

    by Judith Milford, 6 months ago
    When my husband had a life limiting illness in 2019, the oncologist referred him to Palliative Care at FMC (Laurel House). My husband had decided to remain at home for his final days.

    A Palliative Care doctor and nurse, then a Health Navigator came to our home to arrange a care package for end of life. An Occupational Therapist came to see what was necessary and a special bed, wheel chair, shower chair and many other items were delivered.

    Help with showers was arranged as well as regular palliative care nurses and a physiotherapist. Palliative care volunteers were available to... Continue reading

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    Mr

    by Jon, 7 months ago
    Terminal illness
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    Palliative Care

    by B Schroeder, 7 months ago
    About 15 years ago my younger sister died of cancer. She was 42.


    The last weeks of her life were spent in the hospice attached to the Daws Rd Repatriation Hospital.

    The staff were wonderful. She was cared for and looked after and respected, and they cared for her family as well (very hard on her children). She was kept as comfortable as possible the whole time and suffered very little.

    I have never forgotten how positive the whole experience was, under the circumstances, and how well her final days were managed. THAT has stuck in my mind as genuinely... Continue reading

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    My father slipped through the cracks of the system

    by CarolynH, 8 months ago
    My father had end stage renal disease and had been on dialysis for ten years at Flinders Medical Centre. When he became hospitalised, the decision was made to withdraw him from treatment and so I asked his attending doctor at FMC that he be reviewed by the palliative care team to ensure that his final days were comfortable.

    The palliative care team were not notified and my father's pain was treated with intravenous morphine. I requested that he be given a syringe driver to slowly administer the morphine because the 'as needed' bolus morphine injections he was receiving were making... Continue reading

Page last updated: 25 May 2023, 04:52 PM