Aged care and palliative care

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A palliative approach in aged care: Definition and overview

The ‘What is a Palliative Approach?’ fact sheet from the widely used Residential Aged Care Palliative Approach Toolkit (the PA Toolkit) defines a palliative approach in aged care as follows:

  • A palliative approach to care aims to improve the quality of life for residents with life-limiting illnesses and to support their families. The usual time to start a palliative approach is when treatments given to cure a condition are no longer working or when the resident chooses to stop their curative treatments.
  • The focus of a palliative approach is on comfort and maintaining or improving quality of life so that residents can live as well as possible until they die in an atmosphere of care and support.

The PA Toolkit fact sheet outlines further ‘key messages’ for a palliative approach:

  • The decision to commence a palliative approach should be made in collaboration with the resident, their family and the care team.
  • A palliative approach aims to improve the resident’s quality of life and comfort. The focus is on the resident’s cultural, emotional, social and spiritual wishes as well as their care preferences, rather than on aggressive medical treatments.
  • Care management includes good symptom control and attention to the resident’s social and spiritual needs.
  • A palliative approach can be provided in any setting, including residential aged care facilities.
  • It is not limited to the last days or weeks of a resident’s life.

The fact sheet provides a link to a 46 page PA Toolkit document ‘Introduction to a Palliative Approach’ designed in an educational ‘flipchart’ style.

Web: https://www.caresearch.com.au/caresearch/tabid/3629/Default.aspx

Residential Aged Care Palliative Approach Toolkit (the PA Toolkit)

The Residential Aged Care Palliative Approach Toolkit (the PA Toolkit) is a series of resources developed by the Brisbane South Palliative Care Collaborative (an Australian Government funded entity of Queensland Health), building on earlier work undertaken by the University of Queensland and the Blue Care Research and Practice Development Centre.

The PA Toolkit provides a detailed guide to implementing a palliative approach in residential aged care facilities, including policies and procedures and education for staff, as well as resources for friends and relatives of residents.

The PA Toolkit’s Resources by title page has resources organised under the following headings:

  • Implementation guides
  • Clinical practice guides
  • Learning modules
  • Self-directed learning packages
  • Educational flipcharts
  • Educational videos
  • Family and staff support brochures
  • Webinars
  • Clinical forms / Tools available in the PA Toolkit
  • Other PA Toolkit resources
  • Fact Sheets

PA Toolkit fact sheet titles include:

1: Pain

2: Dyspnoea

3: Nutrition and Hydration

4: Oral (Mouth) Care

5: Delirium

See also companion video See, Say, Do, Write and Review: Five Key Actions for Careworkers to Support Residents

6: What is a Palliative Approach?

7: Using the Three Key Processes

8: Advance Care Planning

9: Palliative Care Case Conferences

10: End of Life (Terminal) Care Pathways

11: Understanding the Dying Process

12: Talking with Families

See also the companion video Being Part of the Care Process: How Careworkers Support a Palliative Approach in Residential Aged Care

13: Self-Care for Careworkers

See also the companion video Taking Care of Yourself Matters: An Introduction to Self-Care for Careworkers in Residential Aged Care

14: Cultural Considerations: Some Tips for Careworkers

See also the companion video Cultural Considerations: Some Tips for Careworkers in Residential Aged Care

There is also a fact sheet aimed at educators and staff with a responsibility for training careworkers in Australian residential aged care:

15: Palliative Care Education & Training: An Overview for Educators (PDF 42kb)

Many Victorian aged care facilities will have received a free copy of the PA Toolkit in hard copy form in 2014-15, with the various toolkit resources packaged into a large plastic container. All PA Toolkit components are available online through the Caresearch website.

Web: Residential Aged Care Palliative Approach Toolkit (PA Toolkit) homepage 

 

CareSearch website, including residential aged care section and palliAGED

CareSearch is an evidence palliative care based website developed at Palliative and Supportive Services, Flinders University funded by the Australian Government. CareSearch includes information for health professionals, aged and other community services workers, academics, researchers and for people with a life limiting illness and their carers and family.

CareSearch includes information for:

The CareSearch residential aged care pages are organised into six sections:

along with:

The care issues section includes information on:

Web: CareSearch Residential Aged Care section, CareSearch homepage and palliAGED homepage

palliAGED including palliAGED apps for nurses and GPs by the CareSearch Project Team

palliAGED is an online evidence-based guidance and knowledge resource for palliative care in aged care. It incorporates and updates the evidence-based information previously contained in the Guidelines for a Palliative Approach in Residential Aged Care (APRAC) and the Guidelines for a Palliative Approach for Aged Care in the Community Setting (COMPAC).
palliAGED has been developed by the CareSearch Project Team who are responsible for the CareSearch website.

palliAGED resources include two smartphone applications (app):

  • palliAGEDnurse an app for nurses working in residential aged care, community care and general practice to care for older people with palliative care needs. The app highlights a care framework built around three care processes – advance care planning, palliative care case conferences and a care plan for the dying person.
  • palliAGEDgp an app that supports GPs who are caring for older palliative people living at home or in residential care.

Web: palliAGED home page

 

Decision Assist, including free palliative care phone advisory service for aged care services

Decision Assist is a national project funded by the Australian Government until 31 December 2017. It has been delivered by a consortium of national agencies including since 2014.

The Decision Assist website outlines that the program’s purpose is to:

  • provide specialist palliative care and advance care planning advice to aged care providers and general practitioners (GPs) caring for recipients of aged care services
  • improve linkages between aged care services and palliative care services
  • improve the palliative care and advance care planning expertise of aged care workers and GPs caring for recipients of aged care services
  • improve the quality of care for aged care recipients, prevent unnecessary hospital admission sand shorten hospital stays.
The program’s initiatives include:
  • advance care planning telephone advisory service 1300 208 582
  • palliative care telephone advisory service 1300 668 908
  • website, online learning and mobile applications
  • GP training and resources in advance care planning and palliative care
  • aged care training and resources in advance care planning and palliative care
  • linkages projects.

Web: https://www.decisionassist.org.au/

Residential In-Reach support from hospitals for aged care services

Residential In-Reach* services are funded by the Victorian Government to provide hospital type care, where appropriate and safe, to people living in residential aged care facilities, with the aim of:

  • Ensuring, where possible, that residents gain access to the care they need in the aged care facility and;
  • Reducing the need for people living in aged care facilities to attend hospital emergency departments.

All public hospitals in metropolitan Melbourne, along with some large regional cities, have a Residential In-Reach* team. They are typically staffed by clinical nurse consultants and doctors who may come to the aged care facility to assess and treat residents. Residential In-Reach* services are not intended to replace the care the resident receives from their usual doctor(s).

Residential In-Reach services work closely with community palliative care services. If Residential In-Reach services consider that a referral to community palliative care is appropriate, they can assist with organising the referral.

Contact details for Residential In-Reach services of five north and west metropolitan region hospitals are listed below.

  • *Victorian Government funding for Residential In-Reach style services is now subsumed within a broader program known as the Health Independence Program (HIP). This program also incorporates other streams of funding and program names such as: Hospital Admission Risk Program (HARP); Post Acute Care (PAC); Sub-acute Ambulatory Care Services (SACS). At the hospital/service level, some hospitals have retained the service name ‘Residential In-Reach’ (e.g. Melbourne Health/Royal Melbourne Hospital; St. Vincent’s), some use a slightly different name (e.g. at Austin Health it is Residential Outreach), while others no longer identify ‘Residential in-Reach’ as an individual service, but refer to its function within the context of a broader program name such Hospital Admission Risk Program (e.g. Northern Health) or Immediate Response Service (e.g. Western Health).

Austin Health Residential In-Reach

Program context: Austin Health Residential In-Reach is known as Residential Outreach and is  part of Austin Health’s Ambulatory Services Department, along with Hospital in the Home.

Catchment Area: LGAs of Banyule, Darebin, Nillumbik.

Phone: 9496 4811 or 0422 006 655.

Hours: 7 days per week, 9.00am-5.30pm.

Web: Austin Health site currently doesn’t include a specific service reference.

Melbourne Health/Royal Melbourne Hospital Residential In-Reach

Program context: Residential In-Reach is identified as a separate service within Community Services. Other Community Services include: HARP Complex Care; Post Acute Care; Hospital in the Home.

Catchment Area: LGAs of Brimbank, Maribyrnong, Melbourne, Moonee Valley, Moreland.

Phone: 0448 570 420.

Hours: 7 days a week. 7am-9pm Monday to Friday. 8pm-6pm Saturday and Sunday.

Web: https://www.thermh.org.au/health-professionals/clinical-services/community-services/residential-reach

Northern Health Residential In-Reach

Program context: Northern Health Residential In-Reach is part of Northern Health Hospital Admissions Risk Program (HARP).

Catchment Area: LGAs of Hume, Moreland, Darebin, Whittlesea, Banyule, Nillumbik.

Phone: 1300 128 539 or 9495 3590.

Hours: Monday to Friday 8.30am-5.00pm.

Web: http://www.nh.org.au/services/harp-services

St Vincent’s Hospital Residential In-Reach

Program context: St Vincent’s Hospital Residential In-Reach is identified as a separate service of the St. Vincent’s Health Independence Program.

Phone: 1800 891 300.

Catchment Area: LGAs of Yarra, Boroondara, Darebin (southern end).

Hours: 7 days a week 8.30am-5.00pm.

Web: https://svhm.org.au/home/health-professionals/aged-and-community-care/health-independence-program/residential-in-reach

Western Health Residential In-Reach

Program context: Western Health Residential In-Reach is identified as a separate service within the Western Health Immediate Response Service (IRS).

Phone: 0419 392 030.

Catchment Area: LGAs of Melton, Hobson’s Bay, Wyndham, Maribyrnong, Brimbnak, Moonee Valley, Sunbury area of Hume.

Hours: 7 days a week. 8am-9pm Monday to Friday. 8pm-4pm Saturday and Sunday.

Web: http://www.westernhealth.org.au/Services/IRS/Pages/default.aspx

Community palliative care support for aged care services

As outlined in the Specialist Palliative Care Services Quickguide on this website, community palliative care services are non-government services funded by the Victorian Government to work in partnership with health, aged and community services to support people to stay living at home as long as possible and to die at home if that is their wish. This includes support for family carers and close friends.

Staffing of community palliative care services includes home visiting nurses and a variety of allied health professionals, therapists and volunteers.

***In addition to people’s private homes, community palliative care support is available to people living in aged care facilities or using community aged care services.***

Aged care services can make referrals to community palliative care, along with GPs and other health and community services staff. People can also self-refer.


Locating the right community palliative care service for your facility

As outlined in our NW Metro regional map, people are ‘zoned’ to one of the region’s three community palliative services according to where they live (or in the case of aged care facilities, by the location of the facility), designated by local government areas (LGAs).

There are three community palliative care services in the north and west metropolitan region:

Contact details for these services are included as part of the community palliative care section of Specialist Palliative Care Services Quickguide on this website and reproduced below.


Banksia Palliative Care Service

Catchment Area: LGAs of Banyule, Nillumbik and Whittlesea.

Referrals Phone: 9456 9744. Switchboard: 9455 0822

Fax: 9455 3199

Website: Banksia Palliative Care Service


Melbourne City Mission Palliative Care

Catchment Area: LGAs of Darebin, Hume, Moreland and Yarra. See also listings by suburb below.

Phone: 9486 2666

Fax: 9482 5094

Website: Melbourne City Mission Palliative Care


Mercy Palliative Care

Catchment Area: LGAs of Brimbank, Hobsons Bay, Maribyrnong, Melbourne, Melton, Moonee Valley and Wyndham. See also listings by suburb below.

Phone: 9364 9777

Fax: 9364 9198

Website: Mercy Palliative Care


Normal ‘business hours’ of community palliative care services are 8.30am to 5.00pm Monday to Friday, excluding public holidays. Outside of these hours, existing community palliative care clients and their families/carers have access to an after-hours contact number where a nurse can provide phone advice and, if necessary, initiate an after-hours home visit.


Palliative approach training for aged care services from NW Metro regional project

In addition to running region-wide workshops and assisting with the delivery of Program of Experience in the Palliative Approach (PEPA) workshops, the Consortium’s Aged Care and Palliative Care Project Officer, Jane Newbound is available to attend individual facilities and provide tailored in-house training sessions on topics such as:

  • End of life care
  • Identifying deterioration
  • Advance care planning
  • Having difficult conversations
  • Dementia and dying
  • Pain assessment and management
  • Dyspnoea
  • Terminal restlessness

The project’s training is available to all aged care facilities and other aged care service providers.

The sessions are free and depending on the topics chosen, can run from about one hour up to half a day in length. All sessions can be adapted to meet the needs of staff with different levels of experience and knowledge of end of life care, including Personal Care Assistants, Enrolled Nurses and Registered Nurses.

For further information, contact our Aged Care and Palliative Care Project Officer, Jane Newbound on jnewbound@mcm.org.au or the Consortium office on consortium@mcm.org.au.

Web: Consortium Aged Care and Palliative Care Project

Other palliative approach training opportunities designed for aged care service staff

Residential Aged Care Palliative Approach Toolkit (PA Toolkit) learning modules, self-directed learning packages, educational videos and webinars

The Palliative Approach (PA) Toolkit is an Australian Government funded resource developed by a Queensland Health entity, the Brisbane South Palliative Care Collaborative, building on earlier work undertaken by the University of Queensland and Blue Care Research and Practice Development Centre. It provides a detailed guide to implementing a palliative approach in residential aged care facilities, including policies and procedures and education for staff, as well as resources for friends and relatives of residents.

The PA Toolkit has various learning modules, self-directed learning packages, educational videos and webinars, including:

  • Integrating a palliative approach
  • All on the same page: Palliative care case conferencing in residential aged care
  • Being part of the care process: how careworkers contribute to a palliative approach in residential aged care
  • A palliative approach to assessment and management of pain in the elderly
  • Strategies to facilitate a ‘good death’ for residents in residential aged care

Many Victorian aged care facilities will have received a free copy of the PA Toolkit in hard copy form, with the various toolkit resources packaged into a large plastic container. All PA Toolkit resources are also available online through the Caresearch website.

Web: Residential Aged Care Palliative Approach Toolkit (PA Toolkit) homepage

CareSearch My Learning page (selected modules relevant to aged care)

CareSearch is an evidence palliative care based website developed at Palliative and Supportive Services, Flinders University funded by the Australian Government. CareSearch includes information for health professionals, aged and other community services workers, academics, researchers and for people with a life limiting illness and their carers and family.

CareSearch provides a range of online training modules through a section called ‘My Learning’. Modules relevant to aged care staff include Residential aged care (no. 4) and Dementia (No. 5).

Web: CareSearch My Learning page

Palliative Care Online Training for community aged care staff (and others supporting older people in the community)

Palliative Care Online Training is an Australian Government funded initiative of Sliver Chain Training and the Australian Hospitals and Health Association (AHHA). It is designed to help health professionals and others who provide palliative care to aged persons in the community and includes the following free training modules and supporting resources, based on ‘Guidelines for a Palliative Approach for Aged Care in the Community Setting (COMPAC)’:

  • Introduction to palliative care guidelines
  • Module 1: A palliative approach to care
  • Module 2: Planning and assessment
  • Module 3: Providing care to clients and carers
  • Module 4: Delivering a palliative approach for aged care in the community setting

There are further skills models:

  • Introduction to the skills modules and supporting resources
  • Module 5: Pain management
  • Module 6: Recognising deteriorating clients

The four COMPAC Modules will take a total of 6-8 hours to complete. The two Skills Modules take a total of 7-9 hours to complete. The training modules are accessible free of charge via an online registration process. Once registered, there is access to further resources and information.

Web: http://www.palliativecareonline.com.au/

Decision Assist webinar series on advance care planning for aged care

Decision Assist is an Australian Government funded project that aims to enhance the provision of palliative care and advance care planning services to older people.

Decision Assist’s activities include a series of aged care webinars designed to help guide people through the fundamentals of advance care planning. The Decision Assist website includes recordings and other resources from past webinars. Topics include:

Web: http://www.caresearch.com.au/caresearch/tabid/3207/Default.aspx

Decision Assist online learning modules for aged care staff (residential and community) on a palliative approach and advance care planning

Decision Assist is an Australian Government funded project that aims to enhance the provision of palliative care and advance care planning services to older people.

Decision Assist’s activities include a series of online learning modules for aged care staff providing an introduction to the palliative approach and advance care planning. One set of modules is designed for residential aged care staff. A separate set of modules exists for community aged care staff. Access to the modules is free and via registration with the CareSearch Learning Management System.

Web: http://training.caresearch.com.au/

Program of Experience in the Palliative Approach (PEPA) workshops

The national PEPA website outlines that PEPA is an Australian Government funded initiative that aims to enhance the capacity of workers and organisations to deliver a palliative care approach through worker’s participation in either clinical placements in specialist palliative care services or interactive workshops. In Victoria, PEPA is run by the Centre for Palliative Care and includes:

  • Workshops on the palliative approach that have been specifically designed for people working in Victorian aged care, health and disability sectors and for Aboriginal health workers.
  • Supervised clinical placements that build workforce capacity and enhance links between specialist and generalist healthcare professionals in Victoria.
  • Post-placement support activities that provide further professional development on advanced practice issues in palliative care in Victoria.

In organising workshops for aged care staff in the north and west metropolitan region of Melbourne, PEPA Victoria staff work closely with the Aged Care and Palliative Care Project of the North and West Metropolitan Palliative Care Consortium.

Web: http://pepavic.org.au/

Other palliative care related education opportunities (general, not aged care specific)

Centre for Palliative Care free online training – Palliative Care: Getting Started

The Centre for Palliative Care is part of St Vincent’s Hospital Melbourne and is a Collaborative Centre of The University of Melbourne. The Centre’s website includes an education section with professional development and training opportunities, including access to the free online training Palliative Care: Getting Started.

Web: https://www.centreforpallcare.org/page/31/online-courses

Dying2Learn MOOC (Massive Open Online Course) of CareSearch

CareSearch is an evidence palliative care based website developed at Palliative and Supportive Services, Flinders University funded by the Australian Government. CareSearch includes information for health professionals, aged and other community services workers, academics, researchers and for people with a life limiting illness and their carers and family.

CareSearch activities include the periodic running of a Dying2Learn MOOC for the general public advertised as “looking at death and dying in a different way”. The CareSearch site includes an explanation of what a MOOC is, details of any upcoming MOOC (and enrolment/registration process) and resources and information from past MOOCs.

Web: CareSearch MOOC Dying2Learn

The Palliative Care Bridge website

The Palliative Care Bridge is a statewide-NSW palliative care education program coordinated and delivered by the HammondCare consortium, comprising HammondCare, Sacred Heart Health Service and Calvary Healthcare Sydney.  The Resources section of the site includes educational videos on a wide variety of palliative care topics, organised under the following headings: Physical; Psychological; Spiritual and cultural; Carer tips; Patient and carer perspective; General. The website also includes links to books for purchase, including HammondCare’s The Palliative Care Handbook (first published in 1994 and regularly updated) and The Pain Book.

Web: http://www.palliativecarebridge.com.au/

Disease specific information and training, e.g. Wicking Centre Dementia MOOCs

For disease specific information and training, including the Understanding Dementia MOOC (Massive Oopen Online Course) of the Wicking Centre, see the drop down menus at the bottom of this page for:

  • Cancer
  • Heart Disease
  • Chronic Obstructive Pulonary Disease (COPD)
  • Liver Disease
  • Kidney Disease
  • General Neurological Diseases
  • Multiple Sclerosis
  • Motor Neurone Disease (MND)
  • Parkinson’s Disease
  • Frailty
  • Dementia
  • Stroke
Aged care sector advocacy organisations and complaints bodies (not palliative care specific)

Aged Care Complaints Commissioner

The Australian Government’s Aged Care Complaints Commissioner* provides a free service for anyone to raise their concerns about the quality of care or services being delivered to people receiving aged care services subsidised by the Australian Government, including residential aged care and home-based services.

The objectives of the Aged Care Complaints Commissioner are to:

  • Resolve – To work with (service users and their families) and the service provider to acknowledge and resolve concerns or complaints and make a positive difference for people receiving aged care
  • Protect – To take timely action on issues raised through complaints to ensure people receiving aged care are well cared for and protected
  • Improve – To work with the aged care community to learn from complaints and act on opportunities to improve aged care

*From 1 January 2016, the Australian Government’s Aged Care Complaints Commissioner replaced a service known as the Aged Care Complaints Scheme.

Web: https://www.agedcarecomplaints.gov.au/

Elder Rights Advocacy

Elder Rights Advocacy (ERA) is a statewide non-profit organisation providing a free individual advocacy service for all Victorians living in a residential care facility or accessing (or on the waiting list for) a home care program sponsored by the Australian Government. Advocacy is available for people receiving (or on a waiting list to receive) aged care services and their families. ERA is funded by the Australian Government as part of the National Aged Care Advocacy Program (NACAP) along with equivalent organisations in other states and territories, such as the NSW based Seniors Rights Service.

Web: http://era.asn.au/

Seniors Rights Victoria

Seniors Rights Victoria is a statewide non-profit service providing information, support, advice and education to help prevent elder abuse and safeguard the rights, dignity and independence of older people. Services include a free telephone helpline, specialist legal services, short-term support and advocacy for individuals and community and professional education. Seniors Rights Victoria is also actively involved in policy and law reform and works with other organisations to raise awareness of elder abuse.

Web: https://seniorsrights.org.au/

Aged care sector peak bodies and government information (not palliative care specific)

My Aged Care and Aged Care Assessment Service (ACAS)

My Aged Care is an Australian Government website and phone service designed as a key ‘gateway’ to information about all aspects of Australian Government funded aged care services, including aged care homes, aged care packages, the Commonwealth Home Support Programme (CHSP) and the process for assessment of eligibility for these services through an Aged Care Assessment Team (ACAT) known in Victoria as Aged Care Assessment Service (ACAS).

Phone: 1800 200 422 between 8.00am and 8.00pm on weekdays and 10.00am and 2.00pm on Saturdays. The My Aged Care phone line is closed on Sundays and national public holidays.

Web: http://www.myagedcare.gov.au/ and http://www.myagedcare.gov.au/eligibility-and-assessment/acat-assessments

Centrelink information for older Australians

Centrelink is an Australian Government agency, part of the Australian Government Department of Human Services, that delivers various Australian Government payments and services, including the age pension, the Commonwealth Seniors Health Card, Carer Allowance and the Continence Aids Payment Scheme. The Older Australians section of the Centrelink/Department of Human Services website has information about these and other Australian Government initiatives.

Web: https://www.humanservices.gov.au/customer/themes/older-australians

COTA Australia

COTA Australia (formerly known as Council on the Ageing) is the peak national organisation representing the rights, needs and interests of older Australians. COTA Australia focuses on policy issues from the perspective of older people as citizens and consumers. COTA Australia is the national policy and advocacy arm of the COTA Federation which comprises COTAs in each State and Territory, including COTA Victoria.

Web: http://www.cota.org.au/australia/

Aged & Community Services Australia (ACSA)

Aged & Community Services Australia (ACSA) describes itself as “the leading peak body supporting over 700 church, charitable and community-based not-for-profit organisations that provide accommodation and care services to older Australians” and being “at the forefront representing, leading and supporting members to achieve excellence in providing quality affordable housing and community and residential care services for older Australians”.

Web: http://www.acsa.asn.au/

Leading Age Services Australia (LASA) and LASA Victoria

Leading Age Services Australia (LASA) describes itself as “the only industry peak body acting on behalf of private sector and not-for-profit providers delivering retirement living, home care and residential aged care services”. LASA vision is to “create a high performing, respected, sustainable aged services industry delivering affordable, accessible, quality care and services for older Australians”. Its stated purpose is to “represent our members by advocating their views on issues of importance and support our members by providing information, services and events that improve their performance and sustainability”. There are LASA affiliate organisations in various states and territories, including LASA Victoria.

Web: http://www.lasa.asn.au/ and http://lasavictoria.asn.au/

COTA Victoria and Seniors Information Victoria

COTA (Council on the Ageing) Victoria is the primary organisation representing the
interests of older Victorians, with a mission to “advocate for, resource and mobilise older people to create an age‐friendly Victoria”. Among its range of activities, COTA Victoria runs Seniors Information Victoria, a free information service on a wide range of issues of interest to older Victorians, including: housing options from independent living to residential care; concessions and pensions; home-based and community services; general information on financial and legal issues; health and wellbeing; retirement; new learning opportunities.

Web: http://cotavic.org.au/ and http://cotavic.org.au/info/siv/

Victoria’s Commissioner for Senior Victorians

A key role of the Commissioner for Senior Victorians is to advise and report to the Victorian Government on priority policy issues affecting senior Victorians. In 2016 this included publication of Commissioner’s report, Ageing is everyone’s business: a report on social isolation and loneliness among senior Victorians. The Victorian Government response to the Ageing is everyone’s business report includes a series of Age-Friendly Victoria initiatives.

Web: https://www.seniorsonline.vic.gov.au/services-information/commissioner-for-senior-victorians

Seniors Online Victoria

Seniors Online is a Victorian Government website that aims to be the first port of call online for older Victorians on subjects including: the Seniors Card program; Victorian Seniors Festival events; Victorian Government programs for older Victorians. Victoria’s Commissioner for Senior Victorians is a regular contributor to the website.

Web: https://www.seniorsonline.vic.gov.au/

Clinical issues - Information for families

Affirming life: What is a palliative approach – a guide for family and friends with loved ones in aged care

The 68 page ‘Affirming life: What is a palliative approach’ booklet was developed with input from a range of organisations including Palliative Care Victoria. It is designed to help family and friends understand the palliative approach provided in residential aged care and to encourage their involvement in care. The booklet can be accessed from the Families and Patients section of Palliative Care Victoria’s online library website.

Web: http://www.pallcarevic.asn.au/library/for-families-patients/fp-palliative-care-in-aged-care/

Palliative Care Victoria website section for families and patients

In addition to the booklet, Affirming life: What is a palliative approach – a guide for family and friends with loved ones in aged care, the ‘For Families and Patients’ section of the Palliative Care Victoria website, provides a range of information and resources for family and friends of people living with life-limiting illness.

Web: http://www.pallcarevic.asn.au/families-patients/

CareSearch website pages for residents and families

CareSearch is an evidence palliative care based website developed at Palliative and Supportive Services, Flinders University funded by the Australian Government. CareSearch includes information for health professionals, aged and other community services workers, academics, researchers and for people with a life limiting illness and their carers and family.

The residential aged care (RAC) section of CareSearch has a heading ‘For Residents and Families’ with information on topics including:

There is also a CareSearch section designed for all patients, carers and families.

Web: CareSearch section with residential aged care for residents and families

Disease specific information, including dementia, cancer MND etc.

For disease specific information, see the drop down menus at the bottom of this page for:

  • Cancer
  • Heart Disease
  • Chronic Obstructive Pulonary Disease (COPD)
  • Liver Disease
  • Kidney Disease
  • General Neurological Diseases
  • Multiple Sclerosis
  • Motor Neurone Disease (MND)
  • Parkinson’s Disease
  • Frailty
  • Dementia
  • Stroke
Clinical issues - Family meetings/case conferences and communication with families

CareSearch website pages on talking with the family and case conferencing

CareSearch is an evidence palliative care based website developed at Palliative and Supportive Services, Flinders University funded by the Australian Government. CareSearch includes information for health professionals, aged and other community services workers, academics, researchers and for people with a life limiting illness and their carers and family.

The residential aged care (RAC) section of CareSearch, includes pages on ‘Talking with the family’ and ‘Case conferencing’.

Web: CareSearch – Residential Aged Care – Talking with the family and CareSearch – Residential Aged Care – Case conferencing

Talking with families fact sheet from the Residential Aged Care Palliative Approach Toolkit

The ‘Talking with families fact sheet’ from the Residential Aged Care Palliative Approach Toolkit (PA Toolkit) includes the following ‘key messages’:

  • Talking with families can be difficult but it is important so that you are more aware of their needs and wishes. This will allow you to support them and the resident as the resident’s condition worsens.
  • Ongoing and open communication with families is important to ensure the best outcomes for the resident and their family.

Web: https://www.caresearch.com.au/caresearch/Portals/0/PA-Tookit/Resources_2016_Update/Fact_Sheet_12_Talking_with_Families.pdf

Palliative Care Case Conferences fact sheet from the Residential Aged Care Palliative Approach Toolkit

The ‘Palliative Care Case Conferences fact sheet’ from the Residential Aged Care Palliative Approach Toolkit (PA Toolkit) describes a palliative care case conference (also known as family meetings) as:

  • “a meeting held between the resident (if able to attend), their family and/or their substitute decision maker, and members of the care team including the doctor. The aim of the case conference is to discuss issues and raise concerns about the resident’s condition, to review the resident’s advance care plan, and to agree on clear goals for the resident’s future care. There is no right or wrong time for a case conference but it will often be arranged when the resident moves into the aged care home or because they have a significant change in function or health”.

The fact sheet provides links to further family meetings/case conference information, including:

Web: https://www.caresearch.com.au/caresearch/Portals/0/PA-Tookit/Resources_2016_Update/Fact_Sheet_9_Palliative_Care_Case_Conferences.pdf

Clinical issues - Advance care planning and planning ahead, including Powers of Attorney

Advance Care Planning fact sheet from the Residential Aged Care Palliative Approach Toolkit

The ‘Advance Care Planning fact sheet’ from the Residential Aged Care Palliative Approach Toolkit (PA Toolkit) describes advance care planning in the following way:

  • “If a person becomes very ill they may not be able to make (or communicate) decisions about their preferred health care. Advance care planning (ACP) gives residents the opportunity to think about, discuss and hopefully write down their personal values and care preferences for the future. It also allows them to nominate a substitute decision maker to act on their behalf if they are unable to do so because of illness. These choices can help guide care providers to deliver treatments that are in line with the resident’s wishes.
  • “Advance care planning is not usually a single event – it involves an ongoing discussion over time. Ideally, ACP discussions will be with the resident, their family, substitute decision maker and the care team including the doctor, and will result in the completion an ACP document(s). If possible, ACP discussions should commence prior to moving into the residential aged care facility, and should also be a part of routine care for every resident soon after they move into the residential aged care facility”.

The fact sheet provides links to further advance care planning information within the PA Toolkit, including:

Web: https://www.caresearch.com.au/caresearch/Portals/0/PA-Tookit/Resources_2016_Update/Fact_Sheet_8_Advance_Care_Planning.pdf

Further information on advance care planning in the Resources section of this website

For further information on advance care planning and planning ahead, including Powers of Attorney, see the separate pages in the Resources section of this website on advance care planning and conversations about dying and death.

Clinical issues - Recognising deterioration

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG) formerly known as Prognostic Indicator Guidance

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life. It includes specific clinical indicators related to three trajectories:

  1. Cancer
  2. Organ Failure
  • Heart disease
  • Chronic Obstructive Pulmonary Disease (COPD)
  • Kidney Disease
  • Liver Disease
  • General Neurological Diseases
  • Parkinson’s Disease
  • Motor Neurone Disease
  • Multiple Sclerosis

3. Frailty, dementia, multi-morbidity

  • Frailty
  • Dementia
  • Stroke

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Prognostication in Aged Care 

The one page handout ‘Prognostication in Aged Care’ is part of the aged care workshops run by Jane Newbound as part of the Aged Care and Palliative Care Project of the North and West Metropolitan Region Palliative Care Consortium.

The handout draws on sources including the Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care to provide information on general indicators of decline, organ failure, chronic neurological conditions and dementia and frailty.

Download Prognostication in Aged Care handout

Web: http://northwestpalliative.com.au/what-we-do/aged-care-and-palliative-care-project/

 

 

Clinical issues - Symptom management

CareSearch residential aged care (RAC) pages on symptom management

CareSearch is an evidence palliative care based website developed at Palliative and Supportive Services, Flinders University funded by the Australian Government. CareSearch includes information for health professionals, aged and other community services workers, academics, researchers and for people with a life limiting illness and their carers and family.

The ‘care issues’ pages of the residential aged care (RAC) section of CareSearch includes a heading ‘Symptoms’ with information on:

  • Assessment
  • Behaviour Management
  • Bowel Management
  • Dysphagia
  • Dyspnoea
  • Emotional Needs
  • Oral Care
  • Pain
  • Pain in Dementia and Other Neurological Conditions
  • Skin Care
  • Wound Care

The CareSearch RAC care issues pages also includes information on:

  • Recognising Dying
  • Care Planning
  • Care Pathways
  • Continuity of Care
  • Dementia
  • The Frail Aged
  • Nutrition and Hydration
  • Myths About Morphine

Web: CareSearch ‘Symptoms’ pages as part of residential aged care (RAC) section

Palliative approach toolkit fact sheets and clinical practice guidelines

The Residential Aged Care Palliative Approach Toolkit (the PA Toolkit) is a series of resources developed by the Brisbane South Palliative Care Collaborative (an Australian Government funded entity of Queensland Health). The PA Toolkit provides a detailed guide to implementing a palliative approach in residential aged care facilities, including policies and procedures and education for staff, as well as resources for friends and relatives of residents.

The PA Toolkit’s Resources by title page has resources organised under various headings, including

  • Clinical practice guides
  • Clinical forms / Tools available in the PA Toolkit
  • Fact Sheets

The PA Toolkit’s Resources by topic page, includes a ‘care issues’ section with information on:

  • Agitation and restlessness
  • Delirium
  • Dying Process
  • Dyspnoea
  • End of Life Care
  • Grief, Loss, Bereavement
  • Medications (end of life)
  • Mouth Care
  • Nausea and Vomiting
  • Nutrition and Hydration
  • Oral Care
  • Pain
  • Palliative Approach/Palliative Care
  • Respiratory Distress
  • Symptom Management

Web: https://www.caresearch.com.au/caresearch/tabid/3581/Default.aspx

Palliative Care Medicine and Symptom Guide (Western Australia Cancer and Palliative Care Network)

The 24 page Palliative Care Medicine and Symptom Guide booklet was published by the Western Australia Cancer and Palliative Care Network in 2011. It includes sections on:

  • Constipation
  • Nausea and vomiting
  • Pain
  • Shortness of breath

Web: http://www.healthnetworks.health.wa.gov.au/cancer/docs/Pal_Care_Medicine_Symptom_Guide.pdf

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG) formerly known as Prognostic Indicator Guidance

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life. It includes specific clinical indicators related to three trajectories:

  1. Cancer
  2. Organ Failure
  • Heart disease
  • Chronic Obstructive Pulmonary Disease (COPD)
  • Kidney Disease
  • Liver Disease
  • General Neurological Diseases
  • Parkinson’s Disease
  • Motor Neurone Disease
  • Multiple Sclerosis

3. Frailty, dementia, multi-morbidity

  • Frailty
  • Dementia
  • Stroke

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Pain in Residential Aged Care Facilities – Management Strategies (The Australian Pain Society) and the PMG Kit for Aged Care: An implementation kit to accompany Pain in Residential Aged Care Facilities

The 84 page ‘Pain in Residential Aged Care Facilities – Management Strategies’ was published by The Australian Pain Society in 2005. The Australian Government funded ‘PMG Kit for Aged Care’ was developed by Edith Cowan University and is designed as an implementation kit to accompany the Pain in Residential Aged Care Facilities – Management Strategies publication. The publications page of The Australian Pain Society website also includes links to a Pain Management Flowchart, and a Signs of Pain in Older People poster.

Web: http://www.apsoc.org.au/publications

Opioid Conversion Ratios: Guide to Palliative Care Practice (2016 version, May 3)

First published in 2008, with various updates since, this 12 page document of the Eastern Metropolitan Region Palliative Care Consortium (EMRPCC) is widely used by palliative care clinicians. It provides recommended conversions ratios for: oral morphine to other oral opioids; oral opioids to subcutaneous opioids – same drug to same drug; Subcutaneous morphine to other subcutaneous opioids; morphine to transdermal fentanyl; conversion guide for opiod to transdermal fentanyl; sucutaneous fentanyl to transdermal fentanyl – same drug to same drug; transmucosal fentanyl; trnasdermal buprenorphine to oral morphine; methadone; oral methadone to subcutaneous – same drug to same drug; references and summary chart.

Web: http://www.emrpcc.org.au/wp-content/uploads/2016/05/Opioid-Conversions-May-3-2016-final.pdf

Syringe Driver Drug Compatibilities – Guide to Palliative Care Practice (2016 version, May 3)

This 21 page document of the Eastern Metropolitan Region Palliative Care Consortium (EMRPCC) Clinical Group was first published in 2008 and has since been regularly updated. It provides syringe driver compatibility information for the following drugs: Clonazepam; Cyclizine; Fentanyl; Glycopyrronium; Haloperidol; Hydromorphone; Hyoscine Butylbromide (Hyoscine BBr); Ketamine; Ketorolac; Levomepromazine; Lidocaine; Methadone; Metoclopramide; Midazolam; Morphine Sulfate; Morphine Tartrate; Octreotide; Olanzapine; Ondansetron; Oxycodone; Phenobarbital; Ranitidine; Sufentanil.

Web: http://www.emrpcc.org.au/wp-content/uploads/2016/05/Syringe-Driver-Drug-Compatibilities-2016-May-3-final.pdf

Management of respiratory secretions in the terminal phase (2016 version, May 3) and Noisy breathing at the end of life (pamphlet for families)

Management of respiratory secretions in the terminal phase is 4 page document for clinicians published by the Eastern Metropolitan Region Palliative Care Consortium (EMRPCC). The Noisy breathing at the end of life pamphlet is a one page summary for families.

Web: http://www.emrpcc.org.au/wp-content/uploads/2016/05/Respiratory-Secretions-Terminal-Phase-May-3-2016.pdf

Web: http://www.emrpcc.org.au/wp-content/uploads/2016/05/Noisy-Breathing-Familyleaflet2016.pdf

Clinical guidelines for adults in the terminal phase (WA Cancer and Palliative Care Network)

This 47 page guide ‘Evidenced based clinical guidelines in the terminal phase’ (2nd edition, 2010) is published by the WA Cancer and Palliative Care Network. It is organised in a colour coded ‘flipchart’ style in five sections: Dyspnoea (Community and Inpatient); Nausea and Vomiting; Pain; Respiratory Tract Secretions; Terminal Restlessness/Agitation.

Web: http://www.healthnetworks.health.wa.gov.au/cancer/docs/Evidence_based_guidelines_2011.pdf

Clinical issues - Recognising dying and care in the terminal phase

CareSearch residential aged care (RAC) pages on recognising dying

CareSearch is an evidence palliative care based website developed at Palliative and Supportive Services, Flinders University funded by the Australian Government. CareSearch includes information for health professionals, aged and other community services workers, academics, researchers and for people with a life limiting illness and their carers and family.

In addition to CareSearch clinical evidence pages on end of life care, the ‘care issues’ pages of the residential aged care (RAC) section of CareSearch includes a page on recognising dying.

Web: CareSearch page on recognising dying with residential aged care (RAC) section

Palliative approach toolkit fact sheets on end of life care pathways and understanding the dying process

The Residential Aged Care Palliative Approach Toolkit (the PA Toolkit) is a series of resources developed by the Brisbane South Palliative Care Collaborative (an Australian Government funded entity of Queensland Health). The PA Toolkit provides a detailed guide to implementing a palliative approach in residential aged care facilities, including policies and procedures and education for staff, as well as resources for friends and relatives of residents.

The PA Toolkit’s Resources by topic page, includes a ‘care issues’ section with information on end of life care.

The PA Toolkit’s Resources by title page has resources organised under various headings, including:

  • Clinical practice guides
  • Clinical forms / Tools available in the PA Toolkit
  • Fact Sheets

PA Toolkit fact sheet titles include:

Web: https://www.caresearch.com.au/caresearch/tabid/3581/Default.aspx

Clinical guidelines for adults in the terminal phase (WA Cancer and Palliative Care Network)

This 47 page guide ‘Evidenced based clinical guidelines in the terminal phase’ (2nd edition, 2010) is published by the WA Cancer and Palliative Care Network. It is organised in a colour coded ‘flipchart’ style in five sections: Dyspnoea (Community and Inpatient); Nausea and Vomiting; Pain; Respiratory Tract Secretions; Terminal Restlessness/Agitation.

Web: http://www.healthnetworks.health.wa.gov.au/cancer/docs/Evidence_based_guidelines_2011.pdf

Clinical issues - Bereavement support for staff and families
Disease specific information and links - Cancer

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care. It includes specific clinical indicators related to cancer.

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Cancer Council Australia

Cancer Council Australia describes itself as the “peak national non-government cancer control organisation”, explaining that cancer control “refers to actions to reduce the impact of cancer on people including: reducing cancer risk and incidence; improving early detection and treatment; and improving care and support for people affected by cancer.”

Cancer Council Australia works with its the eight state and territory cancer member organisations, including Cancer Council Victoria, to:

  • undertake and fund cancer research
  • prevent and control cancer
  • provide information and support for people affected by cancer.

The Cancer Council Australia website includes:

The website notes that additional information for health professionals can be found on the website of Cancer Council Australia’s affiliated clinical partner, the Clinical Oncology Society of Australia, the peak national body representing health professionals working in cancer.

Web: http://www.cancer.org.au/ 

Cancer Council Victoria

Cancer Council Victoria’s mission is “Prevent cancer. Empower patients. Save lives”. Their 2017-21 strategy statement states the intention to “reduce cancer deaths and improve quality of life for people living with cancer while empowering the community by leading and integrating research with our prevention, support and advocacy work”.

In addition to a section for health professionals, the Cancer Council Victoria website includes sections on:

The health professional section includes information on:

Web: http://www.cancervic.org.au/

 

Cancer on Better Health Channel

Better Health Channel is a Victorian Government website that aims to help people understand and manage their health and medical conditions. Better Health Channel includes a page on ‘Cancer’ that has been produced in consultation with and approved by Cancer Council Victoria.

Web: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/cancer

Disease specific information and links - Heart Disease

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care. It includes specific clinical indicators related to Heart Disease.

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Heart Foundation

The Heart Foundation is a federated charity comprising eight state and territory divisions, and a national body. The Foundation is “dedicated to fighting the single biggest killer of Australians – heart disease” and helping create “a world where people don’t suffer or die prematurely because of heart disease”.

The Heart Foundation website includes:

The Heart Foundation also runs a Health Information Service 1300 36 27 87 that provides free personalised information and support on heart health, nutrition and a healthy lifestyle.

Web: https://heartfoundation.org.au/

Heart Conditions on Better Health Channel

Better Health Channel is a Victorian Government website that aims to help people understand and manage their health and medical conditions. Better Health Channel includes a page on ‘Heart Conditions’ that has links to further specific pages on topics such as: Congestive heart failure; Heart disease and stroke; Heart conditions – Angina.

Web: https://www.betterhealth.vic.gov.au/conditionsandtreatment/heart

Disease specific information and links - Chronic Obstructive Pulmonary Disease (COPD)

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care. It includes specific clinical indicators related to Chronic Obstructive Pulmonary Disease (COPD).

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Lung Foundation Australia

Lung Foundation Australia describes itself as a “national charity dedicated to supporting anyone with a lung disease” and “the first point-of-call for patients, their families, carers, health professionals and the general community”.

Lung Foundation Australia works to:

  • Promote the importance of lung health
  • Promote early diagnosis of lung disease
  • Support those with lung disease, their families and carers
  • Promote equitable access to evidence-based care
  • Fund quality research

The Lung Foundation website includes:

Lung Foundation Australia is part of the Lung Health Alliance, a collective of national respiratory not-for-profit organisations working together to improve the lung health of individuals and communities in Australia and to contribute to the global effort for lung health. The other members of the alliance include: Asthma AustraliaAustralian respiratory councilCystic Fibrosis AustraliaNational Asthma Council AustraliaThe Thoracic Society of Australia and New Zealand.

Lung Foundation Australia also runs a Information and Support Centre on freecall 1800 654 301.

Web: http://lungfoundation.com.au/ or freecall Information and Support Centre 1800 654 301

COPD on Better Health Channel

Better Health Channel is a Victorian Government website that aims to help people understand and manage their health and medical conditions. Better Health Channel includes a page on ‘Chronic Obstructive Pulmonary Disease (COPD)’ that has been produced in consultation with and approved by Lung Foundation Australia.

Web: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/lung-conditions-chronic-obstructive-pulmonary-disease-copd

Disease specific information and links - Kidney Disease

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care. It includes specific clinical indicators related to Kidney Disease.

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Kidney Health Australia

Established in 1968 as the Australian Kidney Foundation, Kidney Health Australia is the national peak body for kidney disease and promotes good kidney health through delivery of programs in education, advocacy, research and support.

The Kidney Health Australia website includes sections on:

  • Your Kidneys with information about types of kidney disease and kidney cancer and treatment options, including Supportive Care, along with Kidney Health Information Service
  • Connect with information about event, forums and support groups
  • Advocacy with information about key issues and policies

There is also a section for Health Professionals with a range of information, including:

Web: http://kidney.org.au/

Kidney Health Information Service 1800 454 363

Run by Kidney Health Australia, the Kidney Health Information Service provides a free, national, phone support service for people living with and/or affected by kidney and urinary disease. The service offers information, support, referral and advice to patients, families and health professionals.

Web: http://kidney.org.au/your-kidneys/support/patient-and-carer-support/kidney-health-information-service or Ph: 1800 454 363

Kidneys on Better Health Channel

Better Health Channel is a Victorian Government website that aims to help people understand and manage their health and medical conditions. Better Health Channel includes a page on ‘Kidneys’ that has been produced in consultation with and approved by Kidney Health Australia.

Web: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/kidneys

Disease specific information and links - Liver Disease

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care. It includes specific clinical indicators related to Liver Disease.

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Liver Disease – Cirrhosis of the liver

Better Health Channel is a Victorian Government website that aims to help people understand and manage their health and medical conditions. Better Health Channel includes a page on ‘Cirrhosis of the liver’ with information on various topics including: symptoms, causes, complications, diagnosis and treatment.

Web: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/cirrhosis-of-the-liver

Disease specific information and links - General Neurological Diseases

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care. It includes specific clinical indicators related to general neurological diseases.

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Definitions and A to Z listings of neurological disorders 

The World Health Organisation describes neurological disorders as “diseases of the central and peripheral nervous system. In other words, the brain, spinal cord, cranial nerves, peripheral nerves, nerve roots, autonomic nervous system, neuromuscular junction, and muscles”.

These disorders include Alzheimer’s Disease and other dementias, Stroke, Motor Neurone Disease (MND) Multiple Sclerosis and Parkinson’s Disease (which each have separate drop down menu information on this page of our website).

Other neurological disorders include: Cerebral Palsy; Huntington’s Disease; Leukodystrophy; Mitochondrial myopathies; Rett Syndrome; Spina Bifida; and many more.

There are various published ‘A to Z’ lists of neurological disorders including one on the brainfacts.org website utilising information form the American based National Institute of Neurological Disorders and Stroke (NINDS) with over 400 disorders listed.

Web: http://www.brainfacts.org/diseases-disorders/diseases-a-to-z-from-ninds/

 

Brian and nerves on Better Health Channel

Better Health Channel is a Victorian Government website that aims to help people understand and manage their health and medical conditions. Better Health Channel includes a range of pages under a heading ‘Brain and nerves’ that has been produced with input from organisations such as Brainlink and the Florey Institute of Neuroscience and Mental Health.

Web: https://www.betterhealth.vic.gov.au/conditionsandtreatment/brain-and-nerves

Disease specific information and links - Parkinson's Disease

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care. It includes specific clinical indicators related to Parkinson’s Disease.

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Parkinson’s Australia, including freecall information line 1800 644 189

Parkinson’s Australia is the national peak body and charity representing people living with Parkinson’s and their family, friends and carers.

The Parkinson’s Australia website includes:

In association state/territory based associations, including Parkinson’s Victoria, Parkinson’s Australia runs a freecall information line 1800 644 189.

Web: http://www.parkinsons.org.au/ or freecall information line 1800 644 189

Parkinson’s Victoria, including freecall information line 1800 644 189

The mission of Parkinson’s Victoria is that: “People living with Parkinson’s have access to comprehensive, relevant and flexible services, encouraging independence and quality of life” and “Funding for Parkinson’s research supports improved quality of life outcomes for people living with the condition, and the search for a cure”.

The Parkinson’s Victoria website includes a range of information for those living with Parkinson’s, their families and carers, peer support groups and health care professionals.

Parkinson’s Victoria also service Victorian calls the to the national freecall information line of Parkinson’s Australia.

Web: http://www.parkinsonsvic.org.au/ or freecall information line: 1800 644 189

Parkinson’s Disease on Better Health Channel

Better Health Channel is a Victorian Government website that aims to help people understand and manage their health and medical conditions. Better Health Channel includes a page on ‘Parkinson’s Disease’ that has been produced in consultation with and approved by Parkinson’s Victoria.

Web: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/parkinsons-disease

Disease specific information and links - Motor Neurone Disease (MND)

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care. It includes specific clinical indicators related to Motor Neurone Disease (MND).

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Motor Neurone Disease (MND) Australia

The MND Australia website explains that Motor Neurone Disease (MND) is “the name given to a group of diseases in which the nerve cells (neurones) controlling the muscles that enable people to move, speak, breathe and swallow undergo degeneration and die. Motor function is controlled by the upper motor neurones in the brain that descend to the spinal cord; these neurones activate lower motor neurones. The lower motor neurones exit the spinal cord and directly activate muscles.  With no nerves to activate them, muscles gradually weaken and waste. MND can affect a person’s ability to walk, speak, swallow and breathe. Motor Neurone Disease (MND) is known as amyotrophic lateral sclerosis (ALS) in many parts of the world, and also as Lou Gehrig’s disease in the USA”.

MND Australia describes itself as “the national voice representing all Australians who share the vision of a world without MND”, working with a national network state/territory MND associations, including MND Victoria to advocate, educate and raise awareness. MND Australia’s goal is to empower Australians impacted by MND to live better for longer.

The MND Australia website includes a wide range of information about MND, including the MNDcare website designed for health, disability, aged and community care professionals

Web: https://www.mndaust.asn.au

MNDCare website

MNDCare is a website of MND Australia specifically designed for health, disability, aged and community care professionals as “evidence based and best practice … for getting motor neurone disease care research into practice”.

MNDcare aims to help people to:

  • assess the needs of the person with MND and their carer
  • get evidence based and best practice MND information
  • make referrals to the right provider at the right time
  • provide a coordinated, multidisciplinary team approach to MND care

The website includes access to MND Aware online training for health and community care professionals.

Web: http://www.mndcare.net.au/Home.aspx

MND Victoria

MND Victoria is affiliated with MND Australia and provides and promotes the best possible care and support for people living with Motor Neurone Disease (MND). This includes a range of information about services to support people with MND and other pages designed for friends and family and health professionals.

Web: https://www.mnd.asn.au/

Motor Nerone Disease on Better Health Channel

Better Health Channel is a Victorian Government website that aims to help people understand and manage their health and medical conditions. Better Health Channel includes a page on ‘Motor Neurone Disease’ that has been produced in consultation with and approved by MND Victoria.

Web: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/motor-neurone-disease

Disease specific information and links - Multiple Sclerosis (MS)

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care. It includes specific clinical indicators related to Multiple Sclerosis (MS).

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

MS Australia

MS Australia describes itself as “the national voice for people with multiple sclerosis”. They work closely with MS Research Australia, who fund research into better detection, treatments and a cure, and state/territory member organistions including Multiple Sclerosis Limited (Australian Capital Territory, New South Wales, Victoria & Tasmania).

The MS Australia website includes sections on:

Web: https://www.msaustralia.org.au/

Multiple Sclerosis (MS) on Better Health Channel

Better Health Channel is a Victorian Government website that aims to help people understand and manage their health and medical conditions. Better Health Channel includes a page on ‘Multiple Sclerosis (MS)’ that has been produced in consultation with and approved by the MS Australia.

Web: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/multiple-sclerosis-ms

Disease specific information and links - Frailty

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care. It includes specific clinical indicators related to frailty.

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Department of Health and Human Services on older people in hospital and frailty

The older people in hospital section of the Victorian Department of Health and Human Services (DHHS) includes a section on frailty, with information on screening and assesment for frailty and responding to frailty. The site also includes links to further information including: the Global Ageing Research Network and their ‘Whitebook on Frailty’Frailty.net, an international educational resource to assist health care professionals involved in the care of older persons implement frailty into their clinical practice; The Australian and New Zealand Society for Geriatric Medicine (ANZSGM) and their position statement on frailty in older people.

Web: https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/older-people/frailty

Centre of Research Excellence in Frailty and Healthy Ageing at the University of Adelaide

The website of the University of Adelaide Centre of Research Excellence in Frailty and Healthy Ageing includes some useful background information on defining frailty and treating frailty.

Web: https://health.adelaide.edu.au/cre-frailty/about/

Disease specific information and links - Dementia

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care. It includes specific clinical indicators related to dementia.

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Alzheimer’s Australia website

Alzheimer’s Australia describes its vision as “a leader in the prevention of dementia, while valuing and supporting people living with dementia”. The Alzheimer’s Australia website provides access to a wide range of resources for health professionals and people affected by dementia and their carers, families and friends, including:

The ‘About dementia and memory’ loss section of the site also includes a series of ‘Help Sheets’ organised headings including:

  • About dementia
  • Changed behaviours and dementia
  • Looking after families and carers
  • Caring for someone with dementia
  • Residential care and dementia
  • Information for people with dementia
  • Younger onset dementia
  • Tips to assist social engagement
  • Dementia Q & A

Web: https://www.fightdementia.org.au/ (national) or https://vic.fightdementia.org.au/ (Victoria)

National Dementia Helpline 1800 100 500

The Australian Government funded National Dementia Helpline is run by Alzheimer’s Australia. The Helpline is a free confidential phone and email information and support service which provides:

  • information about dementia and memory loss.
  • information on how people may be able to reduce the risk of getting dementia.
  • information about government support services (including My Aged Care, the Carer Gateway, Centrelink).
  • information about services.
  • emotional support to help people manage the impact of dementia.

The Helpline is for anyone interested in dementia, concerned about their memory, anybody who has been diagnosed with dementia or who works with people with dementia, or anybody who simply wants to know more.

Web: https://vic.fightdementia.org.au/helpline or Ph: 1800 100 500

Asking questions about Dementia can help – What to ask your health professional about dementia

The 36 page booklet ‘Asking questions about Dementia can help – What to ask your health professional about dementia’ was jointly published in 2011 by Alzheimer’s Australia NSW and Palliative Care NSW. It is designed for people who have recently been diagnosed with dementia and their families as well as families of people with advanced dementia and includes a focus on advance care planning. The publication remains available for download from the Palliative Care NSW website.

Web: https://palliativecarensw.org.au/site/wp-content/uploads/2011/07/PCNSW-Asking-Questions-Booklet.pdf

Dementia – Information for carers, families and friends of people with severe and end stage dementia

The 3rd edition of the 40 page booklet ‘Dementia – Information for carers, families and friends of people with severe and end stage dementia’ was published in 2011 by The University of Western Sydney, Blue Mountains GP Network Incorporated and the Nepean Blue Mountains Local Health Network of NSW Health. It covers topics such as: Types of dementia; Stages of dementia; Time frame for dementia; Cognitive (thinking) ability; Physical symptoms and medical issues.

Web: http://www.uws.edu.au/__data/assets/pdf_file/0008/7100/Dementia_Booklet_Final2011_PDFfor_web.pdf

Talking About Dementia and Dying: A Discussion Tool for Residential Aged Care Staff

The 20 page booklet, ‘Talking About Dementia and Dying’ was published in 2011 by the Wicking Dementia Research and Education Centre of the University of Tasmania. It is designed for residential aged care staff and includes information on:

  • Why talking about death and dying with the families of people with dementia is important
  • Dementia is a terminal illness
  • Preventing inappropriate care at the end of life
  • When to talk about dying for the person with dementia
  • How long will the person with dementia live?
  • Nine Key Steps to holding a conversation about dying

Web: http://www.caresearch.com.au/caresearch/portals/0/documents/whatispalliativecare/nationalprogram/localPCgrants/Utas-Dementia-and-Dying-Book.pdf

The Wicking Dementia Research and Education Centre, including Dementia MOOCs

The Wicking Dementia Research and Education Centre describes itself as “unique in Australia as an integrated dementia centre that is active across a range of disciplines, seeking to improve the lives of people with dementia and their carers” and “at the forefront of translational research and support for issues confronting people with dementia and their carers”, with projects being carried out in Tasmania and nationally, across research fields such as neuroscience, medicine, nursing, psychology and sociology, health, economics and policy.

The Wicking Centre aims to:

  • Better understand the diseases affecting the brain that cause progressive decline in functioning affecting memory, problems solving skills, function and social behaviour;
  • Develop evidence-based models of care provision for people with dementia and their carers;
  • Explore the trajectory of brain and functional changes in ageing through dementia;
  • Provide educational programs to build knowledge and understanding of dementia within the community.

In addition to their research and online Bachelor of Dementia Care (Diploma and Associate Degree also available), the Wicking Centre runs two dementia MOOCs (Massive Open Online Courses) which are free of charge:

Web: http://www.utas.edu.au/wicking/home

Dementia on Better Health Channel

Better Health Channel is a Victorian Government website that aims to help people understand and manage their health and medical conditions. Better Health Channel includes a page on ‘Stroke’ that has been produced in consultation with and approved by Alzheimer’s Australia.

Web: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/dementia

Disease specific information and links - Stroke

Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)

The 2 page Proactive Identification Guidance (PIG) from the UK based Gold Standards Framework (GSF) Centre in End of Life Care provides guidance for clinicians to support earlier identification of patients nearing the end of life leading to improved proactive person-centred care. It includes specific clinical indicators related to stroke.

Web: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/PIG/NEW%20PIG%20-%20%20%2020.1.17%20KT%20vs17.pdf

Stroke Foundation (Australia) including additional websites ‘Inform me’ and ‘Enable Me’

Established in 1983 (and operating since 1996 under its current name) the Stroke Foundation describes itself as “the voice of stroke in Australia” that “partners with the community to prevent, treat and beat stroke”. The Foundation works to:

  • Raise awareness of the risk factors, signs of stroke and promote healthy lifestyles.
  • Improve treatment for stroke to save lives and reduce disability.
  • Improve life after stroke for survivors.
  • Encourage and facilitate stroke research.
  • Advocate for initiatives to prevent, treat and beat stroke.

The Foundation website includes detailed information about stroke and a what we do section with information on prevention, support and treatment programs, along with research.

The Foundation also runs two additional websites:

  • Inform me is a dedicated website resource for health professionals to improve the treatment of stroke care. Membership is offered to health professionals working in stroke care, including those currently studying.
  • Enable me is a website designed to provide information, tips and techniques to equip people in their stroke recovery.

Web: https://strokefoundation.org.au/

Stroke Association of Victoria

The Stroke Association of Victoria is a peer support/volunteer based community support service for people re-entering their lives after having a stroke. The Association has representatives across Victoria, focused on ensuring community inclusion for stroke survivors, teaching independent living skills and sharing self-managed rehabilitation techniques.

Web: http://www.strokeassociation.com.au/

Stroke on Better Health Channel

Better Health Channel is a Victorian Government website that aims to help people understand and manage their health and medical conditions. Better Health Channel includes a page on ‘Stroke’ that has been produced in consultation with and approved by the Stroke Foundation.

Web: https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/stroke