South Western Sydney PHN is a not-for-profit health organisation dedicated to supporting general practitioners, practice nurses and other primary health providers.
Advance care planning is the process where an individual can map out the type of health and dental care they would or wouldn’t like to receive if they became seriously ill, injured or unable to communicate their preferences.
A series of workshops will be held across South Western Sydney to help people plan for their future healthcare needs.
SWSPHN has commissioned the Palliative Aged Care Consultancy Service (PACCS) to deliver advance care planning workshops, with funding provided under the Australian Government’s PHN Program.
PACCS is a palliative care and complex pain management service providing consultancy and education to residential aged care facilities across NSW.
The next round of workshops are now open to the public and include online and face-to-face sessions.
The workshops are facilitated by specially trained staff who will guide participants through why advance care planning is important and how to get started. Attendees are supported to discuss their future healthcare preferences, complete an advance care plan and, where appropriate, ensure a more formal advance care directive is completed and signed.
They aim to improve access to support and information so more people feel confident discussing and documenting their healthcare wishes, helping ensure their preferences are understood by both family members and healthcare providers.
The workshops will help provide:
greater confidence in discussing your wishes and preferences
an opportunity to develop an advance care Directive or complete a Values and Preferences Statement in a 1:1 setting
community support through a group setting which fosters peer encouragement and motivation
SWSPHN staff benefited from the expertise of one of our new service providers, the Palliative Aged Care Consultancy Service (PACCS), during a workshop held to mark National Advance Care Planning Week on 17 March.
The PACCs team talked about the importance of advance care planning (ACP), myths, benefits, how to start discussions, the consequences of not having an advance care plan and more.
SWSPHN is commissioning PACCS to deliver similar workshops in community setting across our region.
The workshops are run by specially trained staff who discuss with individuals why and how to plan for their future healthcare needs, help them complete an advance care plan and/or ensure the more formal advance care directive is completed and signed. Find out more
Left: SWSPHN staff Tracy Higgins and David Hoang increased their knowledge of advance care planning at the workshop.
Right: Nichole Petrie (from left) and Maxine Krebs and from PACCS join workshop organiser, Kate Noble from our Integration and Priority Populations team.
Advance care planning workshop highlights
What is advance care planning?
advance care planning is a process in which a person thinks about what is important to them regarding their health and medical treatment
planning for the future
communicating with others
ACP is NOT just for those with a life limiting illness
ACP may also include planning on behalf of someone who has lost capacity
Benefits of advance care planning
helps ensure people receive care which is consistent with their beliefs, values and preferences
health outcomes improve when people are able to talk through their concerns, choices and treatment decisions with health professionals and each other
Conversation starters
I try to talk to all my clients about what they would want if they become more unwell. Have you ever thought about this?
I am pleased to see you recovering from your recent illness. If you became very sick again, have you thought about the treatment that you would want or not want?
Consequences of NOT having a documented plan
care misaligned with your wishes
family distress and/or conflict and clinical escalation by default
New workshops focusing on the importance of planning for your future healthcare needs will be held across South Western Sydney.
SWSPHN is commissioning experienced provider, Palliative Aged Care Consultancy Service (PACCS), to deliver the workshops. Funding is provided under the Australian Government’s PHN Program.
The advance care planning workshops will be run by specially trained staff who will discuss with individuals why and how to plan for their future healthcare needs, help them complete an advance care plan and/or ensure the more formal advance care directive is completed and signed.
According to a 2025 national Advance Care Planning Australia study, 82 per cent of people agree advance care planning can help others make the right decisions for you.
However, only one in three Australians have taken steps to plan for their future healthcare and only 6 per cent of Australians have completed an advance care directive.
In South Western Sydney, the numbers are even lower with far fewer residents recording plans for their future healthcare needs than the NSW average.
About 3.5 per cent of South Western Sydney residents have completed an advance care directive compared with a state average of 14.9 per cent, and 13.8 per cent have completed an advance care plan compared with the state average of 25.1 per cent.
The advance care planning workshops aim to improve access to the support needed to ensure more people consider and discuss their wishes for their future healthcare needs with their family.
SWSPHN Acting Chief Executive Officer, Amy Prince, said advance care planning was good for individuals – ensuring they received the healthcare they wanted – and to ease the burden for families who were otherwise faced with worry and disagreements about decisions around the care of their loved one.
“There are many misconceptions about advance care planning in our region. People believe it’s just about dying or only for older people. They think it’s complex and morbid to think about,” she said.
“PACCs understands the complex nature of advance care planning in our region, and we look forward to working with them to get people talking about death and dying and to improve end-of-life care for our community.”
Workshops will be held at community sites across the region.
The local community had an “overwhelmingly positive” response to SWSPHN and Wollondilly Shire Council’s You Only Die Once event at Bargo Community Centre on 27 August.
The event attracted 12 locals and included a workshop and information stalls focused on end-of-life planning, followed by light refreshments and an opportunity to meet new people as part of the Wollondilly Café Connect series.
End of Life Doula Patsy Bingham, from End of Life Angels, ran the workshop which covered topics including advance care planning, end-of-life planning and wishes, family and friend dynamics.
Stallholders included SWSPHN, Wollondilly Shire Council, Lifeline, Service NSW and community health organisation, EACH.
One participant described the workshop as “informative and engaging, providing valuable insights into a topic that is often complex and sensitive. The warm and thoughtful presentation style created a welcoming environment that encouraged open discussion and sparked important conversations”.
The feedback from all attendees was overwhelmingly positive, and many noted how the workshop helped them see the importance of advanced care planning.
Pictured above: SWSPHN Integration and Priority Populations Coordinator Kate Noble (from left), Patsy Bingham and Wollondilly Council Community Projects Officer – Ageing and Disability, Robyn Filipakis.
07 February 2025
South Western Sydney PHN (SWSPHN) Integration and Priority Populations Coordinator Kate Noble was selected to join The Dementia 100 panel, a NSW Dementia Expert Advisory Group.
The Dementia 100 panel was created to gather various perspectives on the National Dementia Action Plan 2024-2034 and its implementation in NSW.
The panel consisted of 100 individuals from diverse backgrounds, including people with lived experience, carers, healthcare professionals, researchers and experts from various disciplines.
Kate said the panel was created due to the overwhelming interest from a diverse range of people with lived experience and professional expertise across NSW.
“It was great because it brought together a diverse mix of voices, from a broad range of professions and those with lived experiences,” she said.
“It was valuable to hear perspectives from different sectors and to bring forward ideas on how to make dementia care more responsive and accessible.”
The National Action Dementia Plan 2024-2034 is the Australian Government’s response to the World Health Organisation’s (WHO) Global Action Plan on Dementia, which aims to address the growing challenge of dementia.
According to Dementia Australia, dementia is the leading cause of death for Australian women and the second leading cause of death for all Australians.
In NSW, it is estimated the number of people living with all forms of dementia will increase from 138,200 to 252,800 by 2054.
Australia Institute of Health and Welfare dementia in Australia
The Action Plan includes eight high-level actions aimed at enhancing dementia awareness, decreasing the population’s risk of developing dementia, and improving coordination of services for people living with dementia.
These actions aim to:
promote equity and human rights
tackle stigma, improve awareness and promote inclusivity
empower individuals and communities to minimise risk where they can, and delay onset and progression
improve dementia diagnosis and post-diagnostic care and support
improve treatment, coordination and support for people living with dementia
support carers of people living with dementia
build capability of the workforce to care for and support people living with dementia
improve dementia data, maximise the impact of dementia research and promote innovation
National Dementia Action Plan 2024–2034
“This plan is Australia’s version of the global action plan, and it was essential to have a national response to ensure we are improving dementia care in line with global best practices,” Kate said.
A key highlight of Kate’s involvement was the inclusion of the Greater Choice for At Home Palliative Care Measure in the National Dementia Action Plan, something she had been advocating for.
“One of the things I was most excited about was the mention of the Greater Choice for At Home Palliative Care Measure, in the plan,” she said.
“The Greater Choice for At Home Palliative Care Measure aims to improve palliative care coordination across the health and aged care systems and create links between local hospitals, GPs, palliative care services and aged care providers to improve access to quality palliative care for older people living at home.
“It was great to see the importance of palliative care in dementia care being recognised nationally.”
Kate emphasised people living with dementia need to undertake Advance Care Planning discussions early in the disease progression
“It’s important to have these conversations early, to allow people living with dementia to have control over their choices,” she said.
“This is why including Advance Care Planning in the dementia action plan is so important. It’s about offering people choices—whether they want resuscitation, feeding tubes or other treatments as they approach the end of life.”
Kate’s expertise in dementia care, including her clinical experience and ongoing master’s studies, significantly contributed to her selection for the panel.
“I’ve been involved in dementia care for a long time,” she said.
“I’ve worked clinically in dementia for five years, and I’m doing my master’s in dementia. Which, I think, really helped me stand out and made me an ideal fit for the group.”
With her continued work at SWSPHN, Kate remains committed to ensuring dementia care is integrated into primary health services and includes all populations, especially those in underserved communities.
“I’m proud to have contributed to the National Dementia Action Plan 2024-2034 and seen our local perspectives reflected in the final recommendations,” she said.
“It’s exciting to see the issues I’m passionate about, like palliative care and the integration of dementia services into primary health networks, taken seriously at the national level.”
Limited awareness of available services, cultural sensitivities, and logistical barriers are among the key barriers to South Western Sydney residents fulfilling their end-of-life wishes. The “Understanding End-of-Life in South Western Sydney Local Health Forum Report 2024” offers recommendations to enhance community education, improve service access, and strengthen collaboration among healthcare providers.
These findings are based on discussions held during local health forums hosted by South Western Sydney PHN (SWSPHN) in August and September 2024. The forums brought together community members, healthcare providers, and service partners to share experiences with accessing and understanding end-of-life services, as well as identifying gaps and areas for improvement. Topics included palliative care, voluntary assisted dying, and advance care planning.
South Western Sydney PHN’s (SWSPHN) Integration and Priority Populations Coordinator, Kate Noble, was invited to present at the International Dementia Conference at the Hilton Sydney on Thursday, 5 September.
The International Dementia Conference is a biannual conference held over two days with global experts, industry leaders and those with lived and living experiences.
The conference aims to provoke discussions and inspire action among those committed to improving the care of those living with dementia.
This year’s theme, ‘In the Arena’, highlighted the difference between watching the action and being out on the field and, in doing so, giving a platform to those in the arena of complex dementia, palliative care and positive ageing.
Over two days, almost 1,000 people attended the conference to hear from a diverse group of speakers about the latest complex dementia, palliative care and positive ageing research, as well as practice and insights from around the world.
Kate Noble, presenting at the International Dementia Conference
Kate showcased the Peace of Mind Project (POMp), which aims to improve the end-of-life journey for people living with dementia, their carers, families and health professionals by implementing a capacity-building intervention.
POMp was developed by SWSPHN in 2018 as part of the Greater Choice for At Home Palliative Care Measure, which aims to improve palliative care coordination through Primary Health Networks (PHNs).
The Greater Choice for At Home Palliative Care Measure was a four-year pilot program, expected to end in June 2021, but has been extended to 2025 and now includes all 31 PHNs.
During the presentation, Kate spoke about the Capacity Building Model, highlighting the four groups surrounding a person living with dementia: the community, carers, friends and family, general practice, aged care workers, and the South Western Sydney health system.
Kate also highlighted the key barriers reducing access to palliative care for people living with dementia.
“Some key barriers include low dementia literacy and stigma, late diagnosis and late recognition of deterioration and palliative care needs, lack of knowledge and participation in planning in advance for late care needs and wishes, myths and misunderstanding of palliative care and reduced recognition with dementia being a life-limiting disease,” she said.
Other SWSPHN resources and programs were also highlighted during the presentation.
During March and April, SWSPHN held a series of Local Health Forums throughout the region.
Community members, health professionals and community service providers were invited to come along to a forum to discuss how to improve the health of our region and ensure we attract and keep quality GPs, and other primary health professionals.
The feedback from these forums will inform the SWSPHN health needs assessment, which explores priorities, service needs, and gaps within our region. It will also contribute to ongoing strategic planning for our Primary Care Workforce team.
We would like to thank everyone who contributed to an outstanding series of forums.
Below is a report which outlines the key findings.
SWSPHN is currently planning the next Local Health Forums which will focus on palliative care and the importance of advance care planning. We look forward to hosting these forums in August and September 2024. Dates to come shortly. If you are interested and would like to attend, please sign up for our Community Pulse newsletter or follow us on our socials to be the first to hear when these forums are announced.
SWSPHN, Gandangara Local Aboriginal Land Council (LALC) and Yarpa Hub came together with Elders and community members to recognise and raise awareness of end-of-life planning during Advance Care Planning Week.
Patsy Bingham, an End of Life Doula, was at the Advance Care Yarning Session to talk about the importance of having an advance care plan and letting your mob know your healthcare and end-of-life wishes before it’s too late.
The Advance Care Yarning Session helped to relieve the stigma around talking about end-of-life planning. It also allowed Elders and community members to come together, ask questions, and have a yarn about advance care planning in a safe and culturally informative space.
Advance care planning helps ensure your mob knows what care decisions to make when you are no longer able to communicate these yourself.
Caption: SWSPHN’s Integration & Priority Populations Coordinator Ivan Broome with Gandangara LALC staff at the Advance Care Yarning Session.
End-of-life planning for Aboriginal and Torres Strait Islanders
When you let your mob know of your healthcare and end-of-life wishes in advance, you relieve them of the burden of making these difficult decisions without knowing exactly what you would want. For instance, what healthcare you would agree to receive? Do you want to be taken back to country when you pass?
The resources here help relieve the stigma around talking about end-of-life, from advance care planning to palliative care. These resources are for people who live in Gandangara and Tharawal country.
Resources on this page include:
Yarning Our Wishes
Advance Care Planning guide
A Journey into Sorry Business
Palliative care support information for Aboriginal and Torres Strait Islander people living in South Western Sydney
Advance care yarning
This booklet provides scenarios where having an advance care plan in place is beneficial, and how to setup an advance care plan.
Discussion Starter
Use this booklet, developed by Palliative Care Australia and Congress of Aboriginal and Torres Strait Islander Nurses and Midwives, to document what is important to you.
08 March 2024
People living with dementia now have access to Easy Read information about their condition.
SWSPHN has developed an Easy Read factsheet about dementia, which is available on our Health Resource Directory (HRD) website.
The factsheet, developed in consultation with a person living with dementia, has information about:
What dementia is
How dementia is detected
How dementia may affect you
How to live well with dementia
Questions you can ask your doctor
Where to find extra support
The aim of Easy Read is to give more people access to information. Easy Read is a way to present information for people who are not familiar with English, or who have low literacy or learning disability. Easy Read’s unique layout and style presents information so it’s easy to understand.
The Easy Read dementia factsheet adds to the resources about dementia already available on HRD. The factsheets have been formulated under strict clinical guidelines, include information about local support and health services, and are available in English, Vietnamese, Simplified Chinese and Arabic.
