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.

Consultation has concluded. Thanks for your contributions.

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    Let down at the most crucial time

    by Unhappy Brenda, 3 months ago

    My name is Brenda. I worked in the aged care industry for over 20 years.

    During those years I was involved with palliative care both at work and at home. My Mother had dementia and an acquired brain injury and we, her family, had to put her into care. The last 3 years of her live was terrible. Palliative care in her nursing home was not up to standard. Fortunately, we did have the support of a palliative care in our area so at least her pain levels were addressed.

    Then a few years after that, my husband was dying... Continue reading

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    Pure Horror

    by Graham77, 4 months ago

    My wife died 31/01/2018 of breast cancer. Her terminal stages had taken 5 years after about 22 yrs 'remission'.

    In her final stage she took 12 weeks to die - 'too slowly' to be permitted to remain in the Modbury hospital palliative care ward (hospice) therefore we spent her last 7 weeks in the nearby nursing home within our retirement village.

    I say 'we' because of necessity I spent over 12 hours per day with her doing everything for her - toileting, chasing food, feeding, chasing pain medication (when her pump was running out).

    Her GP visited most evenings -... Continue reading

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    not all broken legs are the same

    by Trish, 7 months ago

    My mother’s death

    I cared for my mother at home from when she was showing clear signs of dementia in 2010 until she died, in 2020.

    My mother’s death was precipitated by a fall which broke her thigh, requiring a plate to hold the bone together that extended from her knee to her hip. She was transferred to Calvary Hospital in Wakefield St for surgery, and admitted to Calvary’s orthopaedic ward to recover. She was 96 years old, had advanced dementia, and I was requesting that she receive palliative care. Nevertheless, the physiotherapist visited my mother in the morning following... Continue reading

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    Sent home and told to die of starvation

    by The Mc Dad, 7 months ago

    I was with my lovely wife for 20 years. We were 16 years old when we met a party in Prospect. Like all couples we had our ups and downs. Cancer had already taken enough from our family but the day we were told that my wife's small intestine had stopped working and that treatment was no longer an option. There's no solution or option. I can't imagine what was going through my wife's head. Inside I was turning all sorts of ways I couldn't say or do anything. Rachel was so strong, It's such a cruel disease not being... Continue reading

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    My story as a family member and Palliative volunteer

    by Suejacquier, 7 months ago
    My experience comes from both as a Palliative Volunteer of 25 years And as a carer to both my parents and brother , with whom I sat with while they died.

    In the case of my brother (who passed in 2010) in the Barossa, I can only say, it was my fellow volunteers that got me through..NOT the Palliative care service. Any service in this space that only provided that service during the hours of 9-5, is appalling. I understand that there are not enough staff to cover all bases, all hours....but why not? Dying is'nt scheduled to those hours... Continue reading

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    Lisbeth

    by Lisbeth Cock, 8 months ago
    My daughter has cancer .. terminal .. how much longer ? I hope they are wrong, the latest update says before Christmas 2022. Is there help for her to die at home? She does not want to spend her last hours in a hospice.
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    No quality of life is no way to be at end of life...

    by Brigitta, 9 months ago

    The story of my sister’s cancer journey is long, but these are some situations from her experience that highlight how desperate SA is for a new model of Palliative Care.

    Complete lack of mental health support, even prior to Covid. My sister has increasingly been exhibiting psychological distress, but medical and allied health staff do not ask if she is ok or inquire about her mental health. No counselling or grief support offered at any time in 3 years, despite advanced cancer diagnosis in 2019.

    Oncologist has extremely bad communication and is very uncomfortable discussing death and dying. Oncologist is... Continue reading

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    Home away from Home

    by Virginia Summers, 9 months ago
    My aunty was a fierily independant elderly lady with cerebral palsy, she resisted being admitted anywhere. However she knew when it was time to go. So Aunty Shirley was admitted to Daws House Hostel...... in my opinion this is what palliative care should be like. Firstly ample car parking out the front, so drop in for 10 mins or stay the day (no carpark, no long walks, do fees), next, it was like a home, so she left her home, for another home, she was not in a cold clinical no character room. This is what for me palliative care... Continue reading
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    It could have been better and meant much more.

    by John Arthur, 9 months ago
    My late wife suffered a dibilitating illness over a 2-3 year period. In the last 12 months of her life we received some help via Palliative Care, but we had to work hard to get it. When we finally did, the care was excellent and we were very grateful. After my wife passed away I was offered some councilling for my grief, but unfortunatley this amounted to one session only. I appreciated this very much at a very difficult time. Even though I was offered more, nothing ever eventuated and I was left to my own devices. I certainly could... Continue reading
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    Modbury Hospital Heroes

    by Brian Clements, 9 months ago
    My wife was taken into plaintive care last January at the brand new Palliative Care Unit at Modbury Hospital after a somewhat traumatic experience at another local hospital the previous month.

    The respect and treatment received by my wife was nothing short of tremendous during her final 4 days of life. Her eldest son and I were able to stay by her side for her final 36 hours (in spite of Covid restrictions on visitors). The Professor and his staff were so kind and caring both to my wife but to family as well and her son, who is an... Continue reading

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