Below is the active timeline of Little Haven’s fight for recognition and equitable funding from State and federal Governments for Gympie’s long running and successful Community Based Palliative Care model.
With no information forth coming from the Policy Review team, having exhausted all avenues within QHealth and with the ringing of "there's no more funding for palliative care" in my ears, it was off to Canberra for a meeting with the Federal Health Minister Hon. Greg Hunt - arranged by our local federal MP LLew O'Brien. A meeting with the the Shadow Health Minister Catherine King was also arranged through Senator Murray Watts office. The messaging was simple
Does the current Federal Health department or the Labor Party wish to provide the leadership needed to implement the cost neutral recommendations of the Productivity Commission, thus improving access to home based care for all Australians with all the societal and political goodwill this will engender?
To quote Commissioner Stephen King in recent correspondence “As the Productivity commission is generally known for being quite restrained in our recommendations. I think you can quite rightly point out that when a conservative economic body considers the shortage of end-of-life care to be a problem for both the economy and for society, it is time to take action.”
On the 9th October 2018, President Brandy Murley and CEO Sue Manton met with current Qld Health Minister Steven Miles at Little Haven's request to discuss the current Palliative Care Policy review progress and specifically;
A response from the Minister regarding our funding review – as promised by Minister Dick and Nick Steele in previous meetings.
- The opportunity to discuss our concerns this policy review will hand all funding for Palliative Care solely to the HHS's
- Recognition of the benefits of this model of care for QHealth in providing end of life care options for all Queenslanders.
Ahead of our meeting we provided the following background information. Meeting Notes Minister Miles 9.10.18.
Also in attendance at the meeting was Ali King - Senior Policy Advisor, Nick Steel and Kathleen Forrester Qld Health -Healthcare Purchasing and System Performance Division
Little Haven was provided the opportunity to present our issue AGAIN - with the Departmental representatives stating the time frame for the review has been broadened and they were aiming for information to be released in December. Certainty of funding was guaranteed at current levels for five years. We shall now wait for the information from the policy review to be released in December.
Extract from CEO AGM Report; This week In writing my report I emailed Nick Steele, (Deputy Director General Qld Health) and David Harmer (Senior Director, Strategy Policy & Legislation Branch) reminding them “It’s now a year since we met with the then Qld Health Minister, Cameron Dick and 8 months since their visit to Little Haven.” And of both the Minister and their commitment given several times to fix our funding, and come back to us with a renewed funding arrangement by September.
For what it’s worth this is the update received at 10 am today … “The timeframe and scope of the review has broadened and they’re now aiming for December. Certainty of funding at current levels is clearly provided for until 2023, however they have no insight into whether this will be increased”. How very benevolent of them.
So what now. Be Indignant!!! If you hold any position of influence – Politicians, Journalists, Branch members keep asking the question - Why is Little Haven the poorest funded of the NGO’s receiving less than ½ the funding of our Sunshine Coast equivalent and ½ again of our Brisbane equivalent. And if they fob you off with inanities like – “they can’t fund Little Haven while others in the regions have no access to Palliative Care… Ask How so? When in the absence of services like ours patients are forced into the far more expensive and overburdened hospital system.
We know the value of our service and the only thing that threatens it is a health system that lacks foresight and leadership - that pays lip service to end of life care by commissioning enquirers while ignoring the recommendations. A regional health minister that visits the center, hears the story yet does nothing to right the inequity (to quote the Commissioner) for this very best of regional services.
Little Haven joined with all other NGO Specialist Palliative Care Service Providers at a QHealth funded workshop to add further input to the Palliative Policy Review. After years of rehashing this dialogue with QHealth it's fair to say many in the room (members of the Hospice Services Network) felt a large degree of frustration at being told first up they were unsure of the implications to the review of the Premiers announcement last night of a Parliamentary Inquiry into Aged Care, Euthanasia and Palliative Care. It remains to be seen if our insights shared along with our submissions to the review will be heard. The benefit of meetings like this is the open sharing of information between services, which only served to highlight how even among like minded services there is a great disparity of funding - Little Haven as the most regional provider is also the poorest funded.
All aspects of aged care, including palliative care and euthanasia, will be canvassed in a new Queensland government inquiry, the premier Annastacia Palaszczuk, has announced. What will this mean for the current palliative care policy review and Little Haven? We'll have to wait until the Inquiry terms of reference are released, which is unlikely to happen until the current abortion bill is passed in parliament.
3 of the Little Haven "Family" spoke so beautifully at the Ignite Talk “Dying to Know” event held on the Sunshine Coast last night. Presentations were
short, fast-paced talks to help grow the capacity of individuals and community groups to take action toward end of life planning. Nurses Carolyn Mandersloot, Amy Cadd and Carolyn's daughter Indiana were wonderful representatives and advocates for Little Haven Palliative Care. Amy and Carolyn devote a lot of their time to community education and increasing understanding of issues of death and dying.
Lisa also collaborated with Gympie Women’s Health to develop a four week program entitled “Live, Love, Grieve” with guest speaker from Taylor Street Legal Service and Gympie Funerals. The workshop was well-received and will be repeated in the near future.
Committee President, Brandy Murley, Carers Advocate, Ray Currie, Clinical Coordinator, Bronwyn McFarlane and Business Manager Sue Manton left disheartened following 2nd visit to Little Haven from the Queensland Department of Health. Hoping for an announcement of our funding review, as previously promised, the visit instead was merely to seek ideas and further input to assist with the Department’s review of palliative care services. At a time when we thought the review should be nearing completion a very frustrated business manager noted how little progress had been made. David Harmer (Senior Director, Strategic Policy & Legislation Branch) and Belinda Lewis (Policy Review Lead) admitted despite the Productivity Commission report being cited as a guiding document in the review neither had read the report. After a passionate discussion, Mr Harmer reaffirmed the earlier commitment made in September 2017 by the then Health Minister, The Hon. Cameron Dick to review & "fix" Little Haven's funding.
As part of the PHN Greater Choices at home program funding project officer Jo Pennell established an inter-agency steering committee to ensure local palliative care activities align with state and national end-of-life/palliative care strategies and standards. The committee with representatives from all palliative care providers in the region met for the first time and will continue to work together with second monthly meetings planned.
We are heartened that Jo has engaged with Little Haven so enthusiastically- showing a lot of respect and interest for our model of care and plans to take a 'deep dive' in when she goes out on the road with our nurses later this month.
Little Haven was represented at the Good Life Good Death Expos held in Brisbane in December and Townsville on June 29th / 30th on "A Good Death is Not an Oxymoron". Little Haven and our model of care are now well known in regional Qld and currently we are helping/advocating where possible for the Coen community in FNQ and a Townsville NGO as they seek to improve care at the end of life for people in their regions wishing to "remain on country". The Townsville Expo funded by PCQ was the perfect opportunity to meet and continue discussions with representatives from these regions.
As a member of the Hospice Services Network Qld, Little Haven CEO Sue Manton spoke at the PCQ National Palliative Care Week Dinner on "What Matters Most". Speaking of Carolyn's long weekend, providing support for a wife and teenage son as they cared for their husband and father. A beautiful story of courage in adversity, dignity in decision making and care and the comfort a strong spiritual belief can bring. These are the stories of community based palliative care and they need to be told in the hope the Policy makers will Listen. My-Weekend-22-May-2018
This was PCQ’s first parliamentary information session and with 25 MPs attending, chatting and posing for photos. We were told 3 MPs attending these events is quite common, and 15 would be great … so 25 was extremely exciting. A great way to start National Palliative Care Week.
It was lovely to see local member Tony Perrett among the attendees and I was very proud to hear him before I saw him (as you do with Tony) saying "We know all about Palliative Care in Gympie - We have Little Haven"
Sorry the spelling error was on the photo - not mine
In the lead up to National Palliative Care Week Little Haven CEO Sue Manton requested a meeting to further discuss the current review of Palliative Care policy, community based palliative care and the recently released Productivity Commission Report into Human Services and End of Life Care. Please see attached information provided in support of the request. We were advised a stand alone meeting would be arranged in the near future. (As an asisde - this didn't happen and a further request was made in October). Minister Steven Miles
Llew O'Brien congratulates Gympie's Little Haven Palliative Care for Recognition in PC inquiry report
The high quality service that is delivered by Gympie’s Little Haven Palliative Care has been recognized in the Productivity Commission Inquiry report - Introducing Competition and Informed User Choice into Human Services: Reforms to Human Services. “For decades we’ve known Little Haven provides high quality care to people with terminal illness in the Gympie region,” Mr O'Brien said. “It’s wonderful to see the Productivity Commission after an extensive review of end of life care across Australia has not only recognized the incredible value of the service, but made national adoption of community based Palliative Care their number 1 recommendation."
Read full Press Release Here
Very exciting day. The Final Report of the Productivity Commissions Human Services Review was publicly released today. The Commission's number 1 Recommendation for reforms to End-Of-Life Care is the roll out of Community Based Palliative Care across every jurisdiction in Australia.
Download the full End-Of-Life Inquiry report and recommendations here. There are 2 formats, PDF that will open in another tab or a Word Doc that will download to your computer.
Local Member Tony Perrett rose in State Parliament today and spoke, calling for funding certainty from the Labor Government to match community needs. We thank him for his ongoing advocacy on our behalf. Click the image below to read MP Perrett's Media Release
Meeting with Pattie Hudson PHN CEO, Brandy Murley and Sue Manton LHPC to discuss financial support for Little Haven. We were happy to receive a commitment for one off funding $112K for after hours support to be paid in 2 installments of $42,500 commencing in June and $27,900 upon successful implementation of PalCare Software (July). They also funded and recommended our board attend a one day workshop by SMS Marketing aimed to "improve the income generation of Little Haven staff", which we did in due course.
With the local PHN being one of the chosen 11 pilot sites for the Greater Choices at Home Palliative Care Measure, Little Haven is working collaboratively to improve access to community based palliative care for all in our region.
Hosted by the SCHHS Specialist Palliative Care Services all community palliative care providers were invited to present a 5 minute overview of their services and brainstorming service direction needs. Little Haven has a deed of standing order with the SCHHS for provision of community palliative care services however despite the majority of referrals coming from the HHS scripted funding is completely inadequate.
After consistent advocacy to our PHN (Central Qld Wide Bay Sunshine Coast) to work collaboratively with Little Haven to build capacity and sustainability of our service and seek input and clarity of how funds will be allocated if the PHN is successful in securing funding though the federally funded Greater Choices at Home Palliative Care measure-- CEO Sue Manton was invited by Pattie Hundson (PHN CEO) to a meeting at PHN office to discuss the implications for the region of this project funding. Also in attendance was Jane Campbell (PHN); Jo Pennel (PHN) and Cang Dang (SCHHS)
Little Haven CEO will continue pressure for equitable funding for our community based palliative care model and to ensure something useful comes of this additional $8.3 million funding boost and does not just become an exercise in scoping and resource production rather than increasing genuine palliative workforce capacity. More information on the Greater Choices at Home Palliative Care Project can be found here
Local Federal MP Llew O'Brien ahead of their meeting with The PHN brought newly elected Nationals Deputy Leader and Cabinet Minister for Sport, Rural Health and Regional Communications, Bridget Mckenzie, to the Little Haven centre to meet the team, tour the facility and discuss funding.
Today the senior hierarchy of QLD Health visited Little Haven for the first time in living memory. Nick Steele - Dept Director General Health, David Harmer - Senior Director Strategic Policy and Planning and Anthony West - A/Senior Director Community Services Funding Branch, Healthcare Purchasing. They spent 3 hours meeting with the LHPC team and touring our facilities including our 2 Palliative Care rooms in the Gympie General Hospital.
They came bearing good news. Palliative Care Policy Review is now Queensland Health's number 1 priority! We have come a long way since Sue Manton met with the Community Funding Unit at their head office in Brisbane on the 16/12/2016, when she was informed that Palliative Care was not on Queensland Health's radar. They also confirmed the requested $100K funding has been approved to assist with Iso 9001 and NQSHS accreditation process and implementation of Patient Management Database system PalCare along with a promised review of the Little Haven contract and funding arrangement to be delivered by September 2018.
Little Haven's Business Manager Sue Manton has served on the Board of Palliative Care Queensland since 2014. At this years AGM she was elected as Secretary of the states Peak Palliative Care body. This is important as Sue has made it clear since joining that her priority with the State Council is the recognition, equitable funding and access to Community Based Palliative Care for every community in Queensland.
Very pleased to see the Queensland branch of the Australian Medical Association (AMAQ) joining our call to all political parties for proper funding for Palliative Care in their 5 point Election manifesto, as reported in the Gympie Times Home care 'time bomb' warning - MDs join funds campaign 23rd November 2017.
AMA Queensland president Bill Boyd said:
"Palliative care has been ignored for too long ..... As our population ages we will see huge increases in the number of elderly people requiring palliative care services. If we're struggling now, how will we cope in five or 20 years?"
Today we appreciated a visit at Little Haven from Local MP Tony Perrett and Qld Shadow Minister for Health John-Paul Langbroek.
The Little Haven board is committed to advocating to all political parties for recognition of our demonstrated outstanding model of Community Based Palliative Care and for Government to fund it equitably and sustainably. We are also committed to advocating for this level of care to be available to every regional Queenslander.
This year this community is working to raise the $600,000 shortfall for our service due to inadequacy of Government funding at less than $300,000. Regional Queenslanders deserve better.
Watch the Video to see the election pledge from the LNP to immediately provide $300,000 in funding to little Haven with a full review our our funding. Fortunately Tony was re-elected as the local member, unfortunately the LNP was not so we go back to square one again lobbying the State Labor government who offered us nothing during the campaign.
Click the image below and it will take you to the Gympie Times site in a new window to watch the video
After first floating the idea in November 2016 with Palliative Care QLD today we held the Inaugural meeting of the Hospice Services Network Qld held in Brisbane.
Representatives from Little Haven, Cittimani, Karuna, Ipswich Hospice, Toowoomba Hospice, Hopewell Hospice and Hummingbird House attended. This meeting facilitated by Palliative Care Qld is an important milestone, because this group as community driven frontline Palliative Care Service providers have a wealth of knowledge to share.
Together we have a proud history of delivering compassionate care to 1000's of Queenslanders in our communities, whilst most of Australia is still talking about it. An opportunity to discuss our common goals and difficulties and work together on ensuring the sustainability of our services, because as it is said "A rising tide, lifts all boats"
Red Letter Day! Finally in Maryborough, Sue Manton LHPC Business Manager was sitting in a room face to face with Queensland Health Minister Cameron Dick, QHealth Deputy Director General of Health Nick Steele and Scott Lisle, Acting Executive Director SC Hospital and Health Service.
"Unlike every other meeting with Qld Health I left with a sense of hope. The Minister was very complementary of our service and the work we do and acknowledged the funding issues and that it was his responsibility to fix it. Offering an assurance they would be back to us this year with a reviewed contract and funding agreement. Encouragingly he also said they are looking at Palliative Care service delivery policy. And now we wait." Sue said.
We submitted a detailed submission to present at Palliative Care Australia's national 'Connection with Communities' conference that was held in Adelaide over the 6th to 8th of September 2017. Once again Little Haven's successful and working model of Community Based Palliative Care was not something that our Peak Body was interested in having presented at their conference. Instead PCA accepted submissions by scholars who talk about connecting with communities rather than those who are actually doing it. They'd rather focus on compassionate community models coming out of the UK than the grass roots Hospice services with a long history of a working compassionate community model in regional Australia. Why is that?
In response to the letter received from Queensland Health Minister on the 23rd August 2018 LHPC Business manager Sue Manton submitted a detailed requested to meet with the Minister and/or the Premier in Maryborough whilst they were there for the upcoming Community Cabinet.
Queensland Health Minister Cameron Dick wrote to Little Haven in response to the minister’s office having received 33 letters of support for Little Haven from 13 GP’s and 20 community members. In that letter the minister made the claim that funding for Little Haven was difficult as the Federal Government was drastically cutting funding of Palliative Care funding over the coming years.
In light of that Minister Dicks advised to the LHPC board was to:
“The board of Little Haven should reconsider its client admission / intake policy in recognition of its finite revenue.”
In other words only admit terminal patients who are in the last 3 months of their prognosis and cap the number of patients. For the LHPC board - this is just not acceptable or an option.
At request of the Productivity Commission LHPC Business Manager Sue Manton compiled and submitted LHPS's 3rd submission and significant documentation for their consideration in compiling their final report and recommendations, which is due for submission to the Minister in October with public release at sometime in the future.
Download our 3rd submission to the Productivity Commission here. It is in PDF Format
The Local branch of the Labor Party writes to QLD Health Minister Cameron Dick requesting a review of Little Haven’s funding.
Today in the House of Representatives I spoke about the important service Little Haven provides to people with terminal illnesses and chronic conditions, who require palliative care.
Palliative care services, like Little Haven, have long been neglected. It is essential we treat the dying with the respect and dignity they deserve. These people have built our communities, nursed us, and taught us, and we owe it to them and their families to support palliative care services.
Video of the speech is available on Llew O'Riens Facbook page - to watch click the image below - it will open the video on facebook in a new window.
Traveled to Melbourne to attend the Productivity Commission public hearings inquiry into Human Services Reforms. At the hearing we were allocated 30 minutes to address and answer questions from the Commissioners. It is heartening to have our Community Based Palliative Care model scrutinised by economists whose comments and questions included:
“there's a lot of magic in this very best localised service, and for what it's worth, something that we are struggling with is the difference between supporting the local where the magic exists and having a system where you don't - it's not determined by luck that you are dying in the place where there is a magic local service for that….. And you know, in my mind is, we're in Melbourne today. I'm off to a suburb in Melbourne. How do I make this work? “ Commissioner Innis
Submitted or application for one off Queensland Department of Health funding for Quality Measures, Accreditation & Data management. LHPC had been invited to apply for one off project funding for quality management measures in the boards meeting with QHealth at Nabour in June . This one off funding is important as it will enable Little Haven to gain full international accreditation and implement industry leading PallCare Software, as clearly defined in our strategic plan.
As reported in the Gympie Times article Grim view for Gympie cancer care funding 12 July 2017.
QHealth funds approximately one-third of Little Haven's expenses. The gap in Little Haven's 2016/17 financial year is about $500,000.
This has now become beyond the ability of a small community, albeit a very generous community. This year, Little Haven will post a deficit of $160,000.
"In contrast to assertions (by Health Minister Cameron Dick) in The Gympie Times, we were told there was no more palliative funding available for community care and they have no plans to redirect funding allocated elsewhere," Sue Manton said.
Federal QLD Labor Senator Claire Moore, who has a special interest in Palliative care, travelled to Gympie to meet with us to discuss and see first hand our Community Based Model of Palliative.
Our Federal Member Llew O'Brien brought federal Assistant Health Minister David Gillespie to Little haven to have a first hand look at our facilities and what a successful Community Based Palliative Care organization looks like.
President Brandy Murley, Clinical Coordinator Bronwyn McFarlane, Carer Advocate Ray Currie and I met at Nambour Hospital with QHealth Assistant Senior Director, Strategic Policy and Legislation, Branch Graham Kraak, Anthony West QHealth Community Funding Unit & Cang Dang SCHHS Service Director Community Integrated and Sub-Acute Services.
Whilst we were again told there was no additional long term funding, we were invited to apply for one off project funding for quality management measures. Whilst this will not solve our sustainable funding issues it is important as it will enable Little Haven to gain full international accreditation and implement industry leading PallCare Software, as clearly defined in our strategic plan.
Productivity Commission Draft Report released – To our delight Little Haven and our model of care was highlighted throughout the report. This was the start of our second submission with our comments and feedback on recommendations of the draft report.
Coinciding with National Palliative Care Week an on air Interview with Annie Gaffney ABC Sunshine Coast – offered again an important opportunity to publicly showcase our incredible model of community based care. Read more.
Listen to Interview
As per directive from Cameron Dick’s office we met with the SCHSD at Little Havens office. While Kevin Hegarty did not attend, he sent Kerrie Hayes –Executive Director of Clinical Services, Cang Dang- Service Director Community Integrated and Sub-Acute Services and Dr Louise Welch to basically tell us there was no more funding. Instead the message was clear – we should rationalise our admission numbers “close our books”.
Not satisfied with this, we requested they arrange a meeting with the Department of Health’s Strategic Policy Unit who set the funding agenda within the Department.
In the May budget the Federal Govt announced $8.3m in new money to Primary Health Networks for coordination of end of life care. We requested a meeting with The Director of the Wide Bay Primary Health Network (PHN) Pattie Hudson, to implore them to be one of the 10 pilot sites for this funding initiative.
Subsequently they have applied for this funding however we where then told this money under the funding guidelines was not for frontline services like Little Haven. Once again it appears there is no lack of money in Palliative care – there’s just no appetite to get it out to the grass roots front line service providers.
Armed with funding information from our phone conference Federal Assistant Health Minister David Gillespie MP phone conference we wrote to Qld Minister for Health Cameron Dick (read our letter and his response here) setting out our case and requesting a face to face meeting. At this point the minister refused to meet with us instead directing the SCHSD Executive Director Kevin Hegarty to meet with us on his behalf in a meeting scheduled for May 24th.
As a follow up to that meeting Our Local Federal Member Llew O'Brien orchestrated a Conference call with the Federal Assistant Health Minister David Gillespie MP. This was our first opportunity to put our case to the Federal Government who is ultimately responsible for Health funding. His response was the Federal Government provides the states with considerable funding for palliative care including funding for home based palliative care.
President Brandy Murley and I arranged a very productive first meeting at LHPC with Sharon and Llew O’Brien MP – Federal Member Wide Bay where we presented our issues, which has proven to be the beginning of a very productive working relationship with Llew championing Little Haven’s cause with the Federal Government.
Submitted Gympie Times Letter to the Editor in response to Gympie Times article Dealing With Death feature 3rd March which quoted -
“Health Minister Cameron Dick said each hospital and health service was best placed to determine how their share of the palliative care funding was spent.”
The GT letter and subsequent social media campaign galvanised the local GP’s and wider community to take up our fight for equitable and long term funding. To date the minister’s office has received 33 letters of support for Little Haven from 13 GP’s and 20 community members – All of which helped apply pressure to the Govt.
The Inaugural Glitz and Glamour fundraising event and the associated coverage by Seven News Sunshine Coast on Little Havens service and the very brave Bessie McClay. The Seven evening news story was turned into a video by Channel 7 and was viewed almost 22,000 times. Featuring what we do and our need for equitable funding from the State Government.
Thank you Jennifer and Bessie McClay for sharing your story. Families across the region are doing a beautiful job of looking after their loved ones during their end of life journey.
Little Haven's community based Palliative Care nursing service is there in the background currently supporting the needs and wishes of 78 patients and carers 24/7 to remain at home for as long as possible. Care in the right place at the right time.
Thank you 7 News Sunshine Coast for covering our story.
We had applied to be a presenter at the Compassionate Communities Symposium in Sydney coordinated by Palliative Care Australia. The stated goal of the symposium was
The Symposium will bring together community leaders from local government, not for profit organisations and community groups to develop ways to support people at the end of their lives.
Once again we where overlooked by our Palliative Care peak body who to-date have refused to even acknowledge that right here in our own country we have a Community Based Palliative Care model that is world standard.
Pushed for and got a meeting with QHealth Community Funding Unit Anthony West and Racheal Vowles at QHealth HQ in Brisbane. The community funding unit is responsible for the bulk of our Qld Health funding. Left the meeting furious and in tears as I was told
“increased funding for Palliative Care is not on the QHealth agenda".
Little Haven registers comminitybasedpalliativecare.org Domain name and Twitter handle @compalcare. Website built (Behind a construction wall for now)
The Productivity Commission’s Human Services Review Issue Papers released - prioritising end of life care as one of the six areas where outcomes could be improved both for people who use human services, and the community as a whole. Commenced work on our submission to highlight Little Haven’s Community Based Palliative Care model to this national inquiry.
As a board member of Palliative Care Qld, Sue Manton started discussions with the State Council to create a collaborative of the 7 NGO community driven models of Hospice Care who receive government funding from the Qld Health community funding unit.
Sue Manton's half hour Community Based Palliative Care in Regional Areas presentation was our first opportunity to showcase our long history of international standard community based Palliative care and call for equitable funding to our industry peers and decision makers.
View Full Presentation here Community Based Palliative Care
Meeting in Gympie with Dr Louise Welsh, Clinical Director, Specialist Palliative Care Service, Sunshine Coast Hospital and Healthcare Service to discuss Palliative care funding. Told there was no more funding and we were
"Lucky to get what we get".