March update: Newcomers and nerves

Status report

Fresh air: Shakeups in both the State and Federal Health Ministries following the appointment of Gladys Berejiklian as Premier are cause for quiet confidence. The new Health Minister, Brad Hazzard, has already agreed to speak at the Cancer Council’s Northern Sydney palliative care campaign launch, occurring Tuesday May 16 at 7:30pm – save the date. On the floor too, Hazzard has spoken eloquently about the need for more palliative care specialist doctors and nurses in response to a question from Greg Piper – an exchange which led to the abrupt removal of Clayton Barr from the chamber. You can read the transcript here, as well as why Jillian Skinner will not be missed in some parts of rural NSW.

Talk of the town: Tamworth has made headlines recently thanks to the ABC, as news of the woeful ‘1960s standards’ of palliative care in the region reached a national audience through the 7pm News, and in-depth interviews on ABC Radio. In Southern NSW, discussions about the state of care in Bega and the South Coast were aired. Timed with ministerial changes, this coverage has proven persuasive in Parliament.

Nerves tested: Changes have shaken palliative care services in Hunter New England, with the loss of the wonderful, innovative Susan Newton who had been in Maitland for 10 years – Newton is the creator of The Virtual Hospice programme for patients, their families, and caretakers – and Professor Katy Clark from Newcastle, following her appointment as Director of Palliative Care for the Northern Sydney LHD. Professor Clark’s Newcastle position remains vacant. Meanwhile, we exposed threats to repeal the Gold Standard 24/7 palliative care nursing service in Newcastle early this year. With great support from the local media and members Tim Crakanthorp and Greg Piper, as well as the ABC, Minister Brad Hazzard has since safeguarded the service.

Time to act: In light of these stories above, I urge you to collect signatures on our petition to increase funding for palliative care across the state. Thanks to a combined effort with the Cancer Council’s CanAct network and the I Care About Palliative Care campaign, we are currently sitting at 84,779 signatures – each time we get 10,000 we force another debate in Parliament. You can read more about our combined effort with the Cancer Council in Dubbo here, as well as CanAct’s stories of palliative care across NSW, and palliative care pledge.

Vital reading

‘Ten Questions’ by the Nurses and Midwives Association: Pertinent handouts for people about to enter an aged care facility.

Have your say on Single Aged Care Quality Framework Consultations’: A development to watch and challenge if the proposed changes could adversely affect the care that people in aged care facilities receive.

On Respect’: A terrific piece by the EOL Professionals blog which explains why palliative care is not everyone’s business.

Stop Accepting Death’: Dr Diane Meier talks to Stat News about how overthinking our own mortality can sap joy from life now.

The Death Talker: What we need to know to help us talk about death’: A moving and informative tome by palliative nurse Molly Carlile. Available online via Amazon, Booktopia, or in your local bookstore.

Aged Care Providers Central to Community Led Palliative Care’: The Australian Ageing Agenda explores why GPs can’t be asked to wear two hats when it comes to palliative care.

How Caring For a Dying Husband Made Life Worth Living’: The best seven months of Tracy Grant’s life were the months she spent caring for her husband with terminal cancer (PBS video).

A Word With… Yvonne McMaster’: I was recently profiled for Health Consumers NSW, the result being this lovely piece on my (and our) advocacy efforts.

Where we are at the end of 2016

Since our fourth Parliamentary debate in September, we’re seeing plans and talk about palliative care pick up in all parts of the state – but despite vocal campaigning, there is still incommensurate action on behalf of the Government.

As the year comes to an end, now is a useful time to assess where we stand so we might zero in on the areas which need more pushing throughout 2017.

Cancer Council campaigning

Talk about palliative care in the media is thanks in large part to the Cancer Council’s vigorous new campaign – I Care For Palliative Care.

This campaign is in full swing – with a meeting with the Premier and Health Minister in July, November saw the launch of the ‘Planning For Change’ event, attended by CAN advocates from all over NSW, including several of our Push for Palliative Ambassadors. The Cancer Council is asking for funding for at least 10 more specialist palliative physicians and 129 additional specialist palliative nurses across NSW, with provisions for the culturally appropriate care of Indigenous Australians.

To this end, the campaign has produced a book of heart-wrenching real life stories which illustrate all too sadly what happens when palliative care is in short supply. Off the back of this activity, media stories have been published in Albury and Tamworth, with the call for pledges making headlines in Dubbo.

To help with the campaign, please consider signing the Cancer Council’s pledge if you haven’t done so already, and share with your contacts far and wide.

Movements around the state

The ACI Palliative Care Network Blueprint for Palliative Care was launched earlier this year, and is now being worked though, slowly but steadily, by some of the Local Health Districts. The process right now is on assessing what needs to be improved in order to meet the “Ten Essential Components” of care included in the blueprint, which include access to specialist palliative care.

In good news, it has been confirmed that there will be a new palliative care unit at the beautiful Mona Vale Hospital site. In Wagga, builders have been appointed for the construction of the Forrest Centre. The centre has been billed as a 10 bed hospice – my understanding is that it is a slow stream palliative care unit within an aged care facility. You can find out more here.

The much-needed palliative physician position for Albury is now being advertised, while progress in Maitland is disasterous following the recent resignation of Maitland’s inspirational palliative physician.

Meanwhile, the NSW Audit Office has begun investigating palliative care data across the state.

News from our Ambassadors

At the end of the year, we now have 56 Ambassadors across the state attuned to the palliative care shortages in their local communities. Their news points consistently to black holes in specialist staff availability and palliative care units – see which areas you would like to get involved with in the new year:

On the Central Coast, we have an energetic group of advocates headed by Oana McBride and Margaret Pearce of the Tuggerah Lions Club, pushing for more specialist palliative care staff and a designated palliative care unit to be included in the grounds of Wyong Hospital as it is rebuilt.

The plight is similar in Orange, with the Push For Palliative community there focused on the inclusion of a palliative care unit in the new hospital, and more specialist palliative care staff. Fundraising by the Manning Valley (Taree) group is helping to assist their community when they need palliative care, and to advocate for more specialist availability more broadly.

Meanwhile, Lucy Haslam and Mitch Williams in Tamworth are strenuously calling for a full time specialist physician, many more nurses, and allied health. The need is so great as the region has currently only one FTE palliative care nurse for a local population of 60,000 – with many more in the broader district.

Signatures on our petition to increase funding to palliative care stand at 84,529.

Some inspiration…

I recently attended PCNSW’s 2016 conference in Broken Hill at which the Health Minister spoke and conceded, “I do realise that we must still do much more.”

Among the presenters, including Sarah Wenham, Melissa Cumming, and Anthoulla Mohamudally, all of whom spoke magnificently, was a moving presentation by BJ Miller. If you haven’t heard BJ speak before, his renowned TED talk, now viewed 4.7 million times, is a must-watch and powerful reminder of just how important palliative care is.

See you in 2017!

Our Petition in Parliament

On Thursday September 15, we had our third debate in Parliament for our petition demanding increased government funding for specialist palliative care in NSW. The turnout was terrific, with both galleries full to brimming over and some senior Ministers in the Chamber too!

It started with the Health Minister, Jillian Skinner who said “the NSW Government is committed to ensuring that NSW residents receive appropriate care that meets their palliative and end of life care needs”. She outlined what had already been done by her government, especially the end of life care packages which have already helped about 5,000 people over three years – a drop in the bucket in NSW which has an annual death rate of 47,000!

She put some of the responsibility for palliative care provision on the Local Health Districts and asserted that “the number of specialist medical and nursing staff alone is not necessarily a good measure of the extent to which the needs of people who are dying and their families and carers are met.”

She went on to say that, “the Government is committed to growing the palliative care workforce and has been since 2011”, but later speaks of the (only) seven additional training positions for physicians which have been created since 2011.  With so few funded positions created for palliative physician training the past five years, it is little wonder that (as she says) “recruitment…..of staff specialists is particularly challenging”.

The second speaker for the Government, Mr Adam Crouch, essentially repeated what the Minister had said but slipped in one thing which could help in some areas, namely “the NSW Government will be exploring options to develop social impact investment initiatives to compliment existing palliative care”. That could mean that an NGO or other body could value-add to what the existing palliative care services are doing in a cost-effective way. We all know that palliative care, whether it is provided in the community, in aged care facilities or in acute hospitals, is cost-effective.

In response were three excellent and heartfelt speeches from three Labor members: Member for Maitland, Jenny Aitchison; Member for the Blue Mountains, Trish Doyle; and Member for Wyong, David Harris. All spoke supportively of the demands made by the 83,335 petitioners, namely for better resourcing of the specialist palliative care workforce.

Trish Doyle (pictured below) really got to the crux of the issue – that properly funding specialist palliative care would relieve suffering while relieving much pressure on the Government purse. She cited Dr Anthony Ireland’s and my research to say that “an investment of $27 million would reduce costs elsewhere in the health system by some $140 million, with reduced presentations at emergency departments and shorter average length of stay for patients who attend a hospital”.

We ended the day with photographs on the steps of NSW Parliament House, with the group joined by Jenny Aitchinson and Trish Doyle.

Once again, my many thanks to everyone who was able to make it on the day from far and wide – from Wagga, Maitland, Southern Highlands and the Central Coast. And to those who sent their well wishes in their absence. Your presence and support definitely made an impact on the day – let’s keep pushing!

You can read the entire transcript of the debate here.

Palliative care debate in NSW Parliament, September 15

A quick one! Next Thursday, September 15, marks an important date for our campaign. This is the date our petition for greater palliative care funding will be debated in NSW Parliament for the third (and hopefully final) time.

Join us 4:30pm on Thursday, September 15th (arrive early)
At NSW Parliament House, 6 Macquarie St Sydney

To get to this stage is in itself a truly monumental achievement – over 83,000 signatures, two debates in Parliament, and a state-wide movement has led to this moment. Let’s fill the gallery and make sure we’re heard!

Victorian end of life and palliative care framework

I heard it had $7.2M funding. ? annual or over 4 years?

The Victorian government has released the long awaited end of life and palliative care framework. The framework aims to deliver care where and when people require it and ensure people from all walks of life can determine what happens to them at the end of their life. It recognises that palliative care services alone cannot meet the growing demand that our society will require for care in the final stage of life.

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Orange Push For Palliative – forum recap

Vision from the Orange Push For Palliative

Late last month, the very organised Tracy Wilkinson, along with Jen Hazelton and many other Push For Palliative volunteers in Orange, organised what was a very successful forum which saw over 350 in attendance, from the local community, health community, the media and politics.

Scroll down for access to full-length videos of each speaker from the day – including Gail and Juliette O’Brien, Dr Joseph McRae, A/Prof Amanda Walker, a panel discussion and open forum session. Use these as resources to spread the word amongst your friends and loved ones!

  • The day started with formalities – a welcome from Mayor of Orange City Council Mr John Davis, and welcome to country by Mr Jamie Newman of the Orange Aboriginal Medical Service.
  • The audience then heard an emotionally charged speech from Gail and Juliette O’Brien, wife and daughter of the late Dr Chris O’Brien, and a harrowing first-hand account of Chris’s last few days.
“The cruel irony of it, his own death such a mess, and after he has done so much.” – Juliette O’Brien
  • The next few talks were from Government and LHD representatives. Chief Health Officer of Public & Population Health, representing the Hon. Jillian Skinner, Dr Kerry Chant spoke about the NSW Government Plan for palliative care 2012-2016 but focussed on advance care planning.
  • Richard Cheney, the District Director of Allied Health for Western NSW LHD, and Catherine Nowlan General Manager of the Orange Health Service then took the stage to discuss current plans and future directions. The audience was largely unimpressed, particularly by comments that the old Orange Base Hospital never had any sort of palliative care ward.
  • Local GP, Dr Joseph McRae received a standing ovation for his rousing speech, almost in direct rebuttal to Catherine and Richard’s presentation, about the need for palliative care in Orange, and the role General Practitioners can play in the last days of life.
  • A hard act to follow, the next speech was by myself, Dr Yvonne McMaster, in which I wrapped up the actual, sobering state of palliative care around NSW – and a little bit of the history around our Push For Palliative.
“At the sunset of our lives, may the way you pass away, be the way you want it to be.” – A/Prof Amanda Walker
  • A/Prof Amanda Walker, the Clinical Advisor to the CEC End of Life Care, and Senior Staff Specialist in Palliative Medicine for the SWSLHD (and self-confessed cat lady!) provided a very helpful, heartfelt and highly entertaining speech on Advance Care Directives – how to write them, how to communicate them, what they can and cannot do. Highly recommended for anyone interested in the subject.
  • A change of pace for the rest of the afternoon – the audience heard two short stories from the experience of two carers and local voices from the Orange community, Alison Dutton and Bev Glover.
  • Donna Moody, the First Assistant Secretary of the Ageing and Aged Care Services Division of the Commonwealth Department of Health, spoke helpfully about the Commonwealth Government’s role in end of life care and aged care – providing information, signposts and resources to help navigate the current complex system and get the most out of it.
  • This was followed by a panel discussion, facilitated by Michael Croke, featuring Ruth Jones (Director of Cancer Services & Innovation WLHD), Dr Louis Christie (Palliative Care Services Medical Officer, OHS/LHD), Dr Ken Hazelton (General Practitioner), with Jamie Newman (Aboriginal Medical Service) and myself returning to the stage.
  • Finally, it was time for the audience to have their say. Push For Palliative volunteers took multiple small groups of 5-10 audience members to jot down collective thoughts on what ideal palliative care provision would look like in Orange. The results have since been collated and will inform future advocacy.

You can access all the videos from the day here.

Push For Palliative: March-April update

Dear friends,

It’s been a while since my last update – so much has happened! I’m just back from Port Macquarie and the inaugural Push For Palliative meeting there with Ambassadors Phillipa Passfield (Port Macquarie), Judy Hollingworth (Manning Valley) and other stakeholders – very positive steps.

But Port Macquarie is only the latest in a long string of community action which has taken me up and down the NSW coast and inland over the past 2 months. Please read on for more – and major events still to come.

From Bowral to the office of Gladys Berejiklian: Bringing you up to speed

In early February I was able to meet with stakeholders and clinicians in Bowral. The region has better palliative care services than in much of the state, but there is still a lot of room for improvement. On that front, the Highlands Cancer Council has been instrumental in educating the public on what good palliative care looks like. Two good pieces in the local paper and online have come out of this action (here and here).

From the Southern Highlands to the South Coast – later in February I was in Milton to attend a community meeting there, where I was also very pleased to visit the Milton Hospital, and see plans for two excellent palliative care suites underway, both with amazing views of the surrounding countryside.

Wedgetail Retreat in the hills behind Tweed Heads was next in early March. Wedgetail is the only community-funded hospice in NSW, but it provides a vital snapshot of what a dedicated community and extraordinary leader (Meredith Dennis) can achieve – 4 beds in a beautiful environment, staffed 24/7 by registered nurses. The area will also be host to a PCNSW-sponsored conference in July. Details here and below.

A few speaking engagements and Cancer Council events filled out March, starting at the Tuggerah Shores Lions Club about the needs for care on the Central Coast – which is shaping up to be a real hotbed of activity – followed by the enlivening Dungog Relay For Life and the opening of the luxurious Greenwood Nursing Home in Normanhurst.

$180M in annual savings could be made through greater investments in  palliative care.
And just last week, Dr Tony Ireland and I were very privileged to have a meeting with Gladys Berejiklian. We were able to present the 10,000 latest signatures on our petition, and the revised business case for our cause, which strongly indicates $180M in annual savings could be made through greater investments in palliative care for both community and acute hospitals.

Push launching on Central Coast: Oana McBride and Lions Club team up

Things are heating up in the Central Coast, thanks largely to Ambassador Oana McBride, and the Tuggerah Shores Lions Club. Oana has spearheaded local talk about the great need for a hospice in the area, securing several moving pieces in the media (please read here and here).

With the Central Coast event in mind, I also met with all the State politicians from the Central Coast to talk about the specific needs for palliative care there.

All this has culminated in the launch of a Push For Palliative group for the Central Coast, in cooperation with The Lions Club. The meeting takes place this upcoming Sunday, and I greatly encourage any locals to attend. Please let your friends know too!

April 24th from 10am at the Mingara Recreation Club, Tumbi Umbi.
For more details click here, or contact Margaret (0412 622 400).

Upcoming events

As usual there is a lot happening over the next few weeks and months. Have a look below for events or meetings happening in your local area, and feel free to contact me if you’d like to co-ordinate calendars.

  • Tumbi Umbi, April 24: A very important launch meeting for Push For Palliative in the Central Coast. Held at the Mingara Recreation Club from 10am. More info.
  • Brisbane, May 2: Capacity Australia is hosting a workshop in Brisbane titled ‘Talking Death and Death Law’. If you are at all interested in End Of Life care and communication, this is a must. Register at www.capacityaustralia.org.au. More info.
  • Medicinal Cannabis – Rosehill, May 14-15: Hear about medicinal cannabis in the treatment of epilepsy, and side effects of chemotherapy and cancer at the Medicinal Cannabis Symposium, Rosehill Gardens Exhibition Hall. My good friend and medicinal cannabis campaigner Lucy Haslam will be speaking, along with many others (including Premier Mike Baird). Tickets a must. Book here, or find out more here.
  • Orange, May 29: Important! The Orange Push For Palliative Forum will be held from 10am-4pm in the Orange Ex-Services Club. Gold coin entry to hear Chris O’Brien’s wife and daughter,  NSW Chief Health Officer, Dr Kerry Chant, Prof Amanda Walker, and myself. I cannot emphasise how important this event will be – dedicated newsletter coming soon. More info.
  • Penrith, June 3: The NEPEAN Blue Mountains will hold the 27th Annual Supportive and Palliative Care Conference in the Chairman’s Club Lounge in Pepper Stadium (cnr Mulgoa and Ransley Rd) from 8:15am-4:45pm. More info.
  • Kingscliff, July 21: As mentioned above, PCNSW is sponsoring a conference to be held at the Wedgetail Retreat. Registrations are now open here.

And a few links to round it off…

Back in March, I was fortunate enough to meet with Prof Michael Greco who heads up a website called Patient Opinion, where people can provide feedback about medical, hospital and nursing home treatment. Check it out!

And lastly, this resource from the Australian Centre for Health Research, called ‘Conversations’, is a helpful guide for conversations about the end of life, with the aim of improving End Of Life care.

Warm regards,
Yvonne