palliative care australia · and meeting with the palliative care sector in her role as patron of...

Palliative Care Australia

ANNUAL REPORT 2014–2015

Contents

Message from the President 3

Message from the CEO 4

Empowering 6

Capacity 10

Leading 13

Partnerships 16

Financial Report 20

Palliative Care Australia Annual Report 20152

Patsy Yates PRESIDENT

Palliative Care Australia (PCA) has made significant progress in community outreach, government relations and policy development in the 2014-2015 financial year.

PCA has worked to further consolidate its role as the key advisor to the Australian Government on behalf of the sector. This work is important to ensure that the needs of people as they approach the end of their life are considered in the development of policy.

There has also been a new focus on community engagement on important issues around death, dying and bereavement under the leadership of CEO Liz Callaghan.

In 2014 Dr Yvonne Luxford resigned from PCA to pursue new opportunities. I would like to acknowledge her leadership and dedication to Palliative Care Australia for the four years she led the organisation. I must also recognise Ms Rita Evans who stepped in as interim CEO until Liz Callaghan was appointed. She provided continuity for staff and a guiding hand through the period and her time and dedication is very much appreciated.

The Board has also had some changes during the 2014-2015 period. We welcomed Andrew Allsop to the Board. Andrew is a former President of Palliative Care Western Australia. I would also like to thank Peter Cleasby for his years of service to Palliative Care Australia as a Board member. Peter’s advice and contribution have been very much appreciated by myself and other members of the Board.

This report provides a snapshot of the work and commitment of the Palliative Care Australia team. Our partnerships with Member Organisations and a range of other peak bodies in health and community care have also been critical to our achievements throughout the year. I would like to acknowledge all who have contributed to efforts to achieve PCA’s mission of quality palliative care for all.

As the President of PCA I commend this report to you.

Palliative Care Australia President Patsy Yates

Palliative Care Australia Annual Report 2015 3

Liz Callaghan CEO

Palliative Care Australia (PCA) continues to provide leadership on palliative care policy and community engagement in Australia. The organisation has contributed to the national discussion on palliative care in the form of policy submissions and position statements, through events at the Federal Parliament in Canberra and through community engagement activities like National Palliative Care Week.

PCA has put a greater emphasis on community engagement during the reporting period looking outside the sector to build awareness of what palliative care is, what it offers Australians and how to access it. With a new funding agreement with the Department of Health has come some strategic goals, outlined in the figure on the following page.

These strategic goals will guide us for the next few years as we aim to see a significant shift in Australians understanding of the sector and death and dying.

We only get one chance to get death right for people and every Australian deserves a good death.

As part of this we have updated and refocussed the website. The changes have made it easier for people coming to the site to find the information relevant to them, whether it be finding a palliative care service or sharing and reading stories of a palliative care experience.

The PCA team has also been involved in a number of events to provide opportunities for Australians to start those important end of life conversations. National Palliative Care Week is our feature event for the year. This year PCA stepped outside the box with National Palliative Care Week promotions, focussed around two origami mascots. It was exciting to see the use of humour grabbing the attention of the broader community, with a big increase in web visits and social media interest following this week.

The policy work has also continued unabated, with a number of submissions and position statements developed and provided to Government. Issues covered are diverse, from paediatric palliative care through to medicinal cannabis. This work is not only important from a policy influencing perspective, but also as a collaboration with Member Organisations and the broader palliative care sector. I appreciate all the time and effort our Member Organisations have put in to contributing to and enhancing these documents during this period.

Building on the policy work has been the events team, particularly with the development and running of the End of Life Parliamentary Friends Lunchbox briefings. These meetings allow PCA to showcase the sector and developments within it to the Members of the Federal Parliament. I am grateful for the ongoing support of our co-conveners Catryna Bilyk and Nola Marino who both give up their time and energy to lead this group.

The Palliative Care Australia team has put in a tremendous amount of work in 2014-2015 with a continued drive and focus to improve end-of-life care in Australia. I thank all of the staff for their hard work and dedication.

Palliative Care Australia CEO Liz Callaghan


FOCUS AREAS FOR PALLIATIVE CARE AUSTRALIA

To empower the community to assist people living with a life limiting illness, their carers and families to make informed decisions.

To build capacity for health professionals and service providers to provide care and support for people living with a life limiting illness, their carers and families.

To lead and inform the policy agenda in relation to palliative care.

To strengthen and build collaboration and partnerships that serve to meet the needs of people living with a life limiting illness, their carers and families.

EMPOWERING CAPACITY LEADING PARTNERSHIPS

Liz Callaghan (CEO); Lesley Harris (Corporate Services Manager); Catherine Fullford (Corporate Services Officer); Philippa Kirkpatrick (Policy Manager); Frith Rayner (Communications Manager); Gretchen Irvine (Events Manager); Elizabeth van Wyk (Decision Assist Project Manager); Heidi Moore (Community Awareness Coordinator); Enyonam Glover (Quality Linkages and Decision Assist Program Officer); Sophie Brown (Communications Officer); Anna Manzoney (Communications); Rob Gill (ehospice editor)

CURRENT PCA STAFF


Palliative Care Australia has a remit to improve Australians understanding of palliative care and the benefits of high quality care for people as they face a life-limiting illness.

PCA engages in a number of national health days, raising awareness of the need for palliative care to be a consideration in health planning for these diseases. However, there are a number of specific

NPCW Activities 2015

Palliative Care Australia hosted a number of events to promote the week.

PCA Patron Governor General, Sir Peter Cosgrove AK MC (Retd), planted a Lone Pine at Canberra’s Clare Holland Hospice to acknowledge the close relationship between hospice care and veterans – more of whom are coming into palliative care services.

The Lone Pine project aims to plant the trees around hospices in Australia which would like one to recognise the connection.

NPCW was officially launched by Assistant Minister for Health Fiona Nash at an End of Life Parliamentary Friends Lunchbox on Tuesday 26 May 2015.

The event was preceded by parliamentarians receiving a keep cup and a badge with the ‘dying to talk’ logo and a note to begin a conversation about death and dying with constituents over a cup of tea or coffee.

COMMUNITY ENGAGEMENT

activities the organisation leads and undertakes to develop community awareness and understanding of palliative care.

Without a good understanding of palliative care, what it offers and how to access it, Australians may miss out on having their end-of-life wishes recognised.

NATIONAL PALLIATIVE CARE WEEK 2015

‘Dying to talk; talking about dying won’t kill you’ was the theme for National Palliative Care Week (NPCW) 2015.

Celebrated this year from 24-29 May it introduced two new characters to the conversation about palliative care. Origami dinosaurs Pal and Carey starred in the posters and advertising material circulated by PCA.

In 2015 there was an increased focus on community engagement through social media channels and a series of ‘competitions’ were held in the four weeks leading up to NPCW. It was through this process that the dinosaurs were named. PCA also sought favourite funeral songs and this list was turned into a YouTube video list that could be downloaded.

EMPOWERING


EMPOWERING

The idea of coming together and talking about dying was emphasised throughout the week.

Members of both houses took the message to heart and there were nine mentions of the week in Parliament. Several Members (12) also posted about the NPCW events on their own social media pages.

The lunchbox also launched the PCA “dying to talk’ video campaign and the two prominent Australians featured also spoke at the event.

Well-known Australian entertainer Jean Kittson spoke of her experiences talking to and meeting with the palliative care sector in her role as Patron of the Palliative Care Nurses Association. Love Your Sister’s Connie Johnson, who has terminal cancer, spoke from her personal experience of palliative care and living with a life-limiting illness.

The Guide to a Social Media Afterlife was released at this meeting, a document that has since been distributed by a variety of groups, including to all 18 branches of the NSW Trustee and Guardian.

Other events included PCA CEO Liz Callaghan helping launch the Australian Commission on Safety and Quality in Health Care’s National Consensus Statement: Essential Elements For Safe And High-Quality End-Of-Life Care - an important document that sets out good care pathways in a hospital setting.

In addition Ms Callaghan attended the launch of a new palliative care research project – Listen, Acknowledge and Respond. This consortium project aims to improve the care of the mental health of patients nearing the end of their lives.

On 29 May 2015, trivia nights were held across capital cities including Sydney, Canberra, Adelaide, Perth and Brisbane. These provided a good opportunity to engage the community in a non-threatening environment.

Along with the keep cups and badges distributed to politicians, Palliative Care Australia also circulated Avant card postcards around Australia featuring the dinosaurs.

This postcard was later awarded the ‘Best Postcard for May” as determined by a nominated external judge, a designer.

The postcard was shortlisted for Postcard of the Year. The postcards were supplemented by bus shelter advertisements which were placed in eastern seaboard states.

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National PalliativeCare Week 201524–30 May

palliativecare.org.au

We need to plan for death, just as we plan our lives, because we only get one chance to do it well.Become an advocate for palliative care and dying well at:

Palliative Care Australia is fundedby the Australian Government

an initiative of

Palliative Care Australia hosted a

number of events to promote National

Palliative Care Week 2015.


Website

Palliative Care Australia transitioned to a new website in 2015.

The focus moved from PCA as an organisation to broader community engagement with portals to make it easier for individuals to find the information most relevant to them. The website also seeks to actively engage the community with polls, a page for sharing palliative care stories and a number of videos about palliative care experiences.

Media

PCA continues to feature in the media in print, online and on broadcast news. PCA has released 29 media releases in the period on a range of topics from medicinal cannabis trials through to the need for palliative care in a range of disease areas. PCA continues to be contacted for comment on a range of topics in the sector and the CEO regularly gives interviews.

Social

Social media is one channel PCA employs to maintain and build connections with people working in and interested in palliative care in Australia and around the world.

Social media engagement has grown significantly during the period and remains a key channel for connecting with the sector and the community.

Palliative Care Australia increased its social media presence in 2014–2015 with a 62% increase in Facebook followers and further development of its Twitter presence.

ENGAGEMENT CHANNELS

EMPOWERING

1 July 2014 30 June 2015 Increase

1592 2584 62%

Rebrand

Palliative Care Australia and its Member Organisations undertook to rebrand under the same banner during 2014. The new logos were launched in October 2014.

For the first time in the organisation’s 23 year history, all state and territory palliative care organisations are united under a national brand.


EMPOWERING

Palliative Care Australia transitioned to a new website

in 2015.

The most popular Facebook post

was about National Palliative Care

Week.


Palliative Care Australia has national Standards for Providing Quality Palliative Care for all Australians, and administers the National Standards Assessment Program.

The Standards are used to define the criteria for quality, with specific elements that should be met by services depending on the different levels of palliative care services being provided.

This is a quality improvement program available to all specialist palliative care services across Australia. It enables services to engage in continuous quality improvement through self-assessment against the National Palliative Care Standards, action plan development and implementation, as well as peer mentorship.

The peer mentorship component of this activity ceased at the end of 2014. During 2014-2015, there were 135 active services providers involved in the National Standards Assessment Program.

CAPACITY

SECTOR ENGAGEMENT AND COLLABORATION

In 2015, Palliative Care Australia commissioned an evaluation of the National Standards Assessment Program.

The review found that the program has been successful in its coverage and engagement with specialist palliative care services, but notes that there is a burden of compliance and suggests that opportunities for data analysis and driving collaboration between services are not fully used.

Work will be undertaken through 2015–2016 to develop a strategy for the National Palliative Care Standards and the National Standards Assessment program, taking into consideration the proposed revision to the National Safety and Quality Health Service Standards.

Palliative Care Australia will be seeking to capitalise on the proposed inclusion of additional actions in the National Safety and Quality Health Service Standards relating to end-of-life care to ensure that all people receiving care in Australian health services receive safe and high quality end-of-life care.


CAPACITY

In August 2014, Palliative Care Australia collaborated with Kidney Health Australia to host the Parliamentary Friends End of Life Group meeting. At this meeting the Palliative Care For Chronic and End-Stage Kidney Disease Position Statement was launched by PCA President, Patsy Yates.

In November 2014, Palliative Care Australia collaborated with the Neurological Alliance Australia to host the Parliamentary Friends End of Life Group meeting. At this meeting the Palliative Care and Neurological Conditions Position Statement was launched and distributed to all state and territory health jurisdictions.

In February 2015, the end of life parliamentary friends group discussed paediatric palliative care. It was at this meeting that Palliative Care Australia launched ‘Marmaduke’s Story’ which relates the

END OF LIFE PARLIAMENTARY FRIENDS GROUP

palliative care journey of one family caring for their young son at home with the help of palliative care community support. Palliative Care Australia is grateful to Simon Waring and his family for sharing their story.

A further parliamentary friends group was convened for National Palliative Care Week as reported above.

Dr Frank Brennan, Palliative Care

Physician speaks at the event.


PCA WORKS COLLABORATIVELY WITH A NUMBER OF

ORGANISATIONS TO DEVELOP POLICY SUBMISSIONS AND

POSITION STATEMENTS

CAPACITY

Palliative Care Australia represents the palliative care sector to the Australian Government. To this end, a number of submissions were developed, representing the views of the palliative care sector to ensure that palliative care and issues relating to end-of-life care were considered in the development of policy. PCA works collaboratively with a number of organisations to develop policy submissions and position statements.

Submissions 2014

AugustMedical Services (Dying with Dignity) Bill 2014.

SeptemberSenate Select Committee on Health.

OctoberNational Registration and Accreditation Scheme for Health Professionals.

November

Assessment of the Australian College of Rural and Remote Medicine education, training and professional development programmes.

Submissions 2015

February

Senate Inquiry into the Availability of New, Innovative and Specialist Cancer Drugs.

MarchSenate Inquiry into Regulator of Medicinal Cannabis Bill.

Aged Care Sector Statement of Principles – through the Aged Care Sector Committee and National Aged Care Alliance.

MayIndependent Hospital Pricing Authority draft work programme 2015–2016.

Draft Clinical Practice Guidelines for Dementia

Home Care Packages Programme – extending consumer directed care to consumers and home care providers.

LEADING


CAPACITY

Palliative Care Australia collaborated with the Neurological Alliance Australia to develop a joint position statement on Palliative Care and Neurological Conditions. The position statement identifies actions to improve access to and provision of palliative care for people with neurological conditions, including:

POSITION STATEMENTS

Andrew Potter, National Advocates Program, Multiple Sclerosis Australia, consumer speaker.

• Improved education for neurologists about palliative care and palliative care staff about neurological conditions.

• Early, comprehensive and accessible information on palliative care for people with neurological conditions, their family and carer/s, particularly for people with more rapid onset conditions such as motor neurone disease.

• The development of a national framework for people living with neurological conditions outlining a pathway for palliative care service provision.


CAPACITY

Palliative Care Australia collaborated with Kidney Health Australia to develop the Palliative Care For Chronic And End-Stage Kidney Disease position statement. The position statement identifies actions to improve access to and provision of palliative care for people with end stage kidney disease, including:

• Education for renal health professionals and general practitioners about the articulated pathways and referral systems, in all jurisdictions, to palliative care services for people with chronic and end stage kidney disease.

• Up-skilling and appointment of specialist doctors or nurse practitioners to improve access to treatment and palliative care services for remote, rural and regional patients, particularly for Aboriginal and Torres Strait Islander peoples.

• A central national resource point for written, digital information and education for patients, carers and health professionals on palliative care associated with kidney disease. National implementation of a validated tool to objectively measure the symptom burden associated with end stage kidney disease with an associated quality improvement indicator.

• Targeted implementation strategies to promote advance care planning amongst renal health professionals, people with chronic and end stage kidney disease, their families and carer/s.

• More accessible information and education for health professionals, patients, their family and carer/s on palliative care and kidney disease.

• A national project/research to evaluate which delivery model(s) of palliative care for someone with chronic and end stage kidney disease are cost and resource effective and enhance the patient’s quality of life.


Decision Assist is a multifaceted program funded by the Australian Government, which aims to build capacity, linkages and access to palliative care and advance care planning services for older Australians, by providing support and education to general practitioners and aged care staff.

The program was launched nationally in Canberra on 28 October 2014.

It is being implemented by a consortium of leading national health, aged care and academic organisations including Austin Health, the Australian and New Zealand Society of Palliative Medicine, Flinders University, Palliative Care Australia, Queensland University of Technology, the University of Queensland, Leading Age Services Australia and Aged and Community Services Australia.

PARTNERSHIPS

DECISION ASSIST

It includes a 24/7 telephone advisory service for health professionals, specialised workshops, improved linkages between palliative care and aged care services and a dedicated website featuring the latest information and advice about advance care planning and palliative care.

As the prevalence of ageing Australians with progressive chronic diseases and frailty continues to increase, aged care providers face increasingly complex ethical, legal and clinical challenges associated with the management of timely and appropriate palliative care for these older patients.

Decision Assist aims to address those challenges and ultimately deliver the best quality care to older Australians, by providing up-to-date information and support on advance care planning and palliative care.

Ehospice launched in October 2012 to provide a cohesive resource of international news and information on the latest developments in hospice, palliative and end-of-life care and the Australian site was the first to go live.

In the past three years ehospice has expanded to 13 editions and is now published around the world in English, French, Spanish and Portuguese.

Palliative Care Australia has published 194 articles in the financial year. Analysis form the reporting period shows the Australian site rates well on page views. There were 132 downloads of the mobile app and 3018 people from around the world registered to receive Australian edition alerts.

During the period Australian site ranked third behind the United Kingdom and United States sites.

Other Partnerships

PCA is involved in a number of broad alliances, most notably the Close the Gap Steering Committee and the National Aged Care Alliance.

EHOSPICE


PARTNERSHIPS

The PCA Board provides governance

and oversight of operations.

Professor Patsy Yates (President)

Dr Jane Fischer (Vice-president)

Mr Phil Plummer (Treasurer)

Mr Andrew Allsop

Associate Professor Richard Chye

Professor Peter Hudson

Professor Fran McInerney

Professor Lindy Willmott

Ms Liz Callaghan (Chief Executive Officer)

GOVERNANCE

The role of the Palliative Care Australia Board is a skills-based Board and its role is to provide governance and oversight to the operations of Palliative Care Australia. The Board is:


PARTNERSHIPS

Patsy Yates PCA President (Chair)

Liz Callaghan PCA Chief Executive Officer

Philippa Kirkpatrick PCA National Policy Manager

John Hanks PCACT President

Greg Crawford PCSA Deputy Chair

Tracey Watters PCSA Chief Executive Officer

Stephanie Dowden PCWA President

Jennifer Lowns TASPC President

Carol Douglas ANSPM President

Andrew Allsop PCA Board

Jane Fischer PCA Board

Linda Hansen PCNSW Executive Officer

Fran McInerney PCA Board

Susan Grant PCNT

Rachel Bovenizer PCVIC

Jane Jupe TASPC

Palliative Care Australia’s National Policy Advisory Committee provides strategic advice. It has worked closely with PCA and Member Organisations on the development of important documentation for the organisation. The NPAC has been involved in the development of the strategic plan, providing essential advice on position statements and input into submissions. The contribution of Member Organisations with their ‘on the ground’ experience working with services and the sector is invaluable to PCA.

Members of the National Policy Advisory Committee are:


THE ROLE OF THE PALLIATIVE CARE AUSTRALIA BOARD IS

TO PROVIDE GOVERNANCE AND OVERSIGHT TO THE OPERATIONS OF PALLIATIVE CARE AUSTRALIA

FINANCIAL REPORT 30 JUNE 2015


t 02 6232 4433 e [email protected] w www.palliativecare.org.au f Facebook t Twitter

a Street: Level 1/21 Napier Close, Deakin ACT 2600 Mail: PO Box 24, Deakin West ACT 2600

PALLIATIVE CARE AUSTRALIA

Palliative Care Australia received funding from the Australian Government.

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