“ The end of someone’s life is a very special time in Aboriginal and Torres Strait Islander culture. To ensure people have the care they want, in the place they want, it is important to be able to plan and discuss their wishes,
For example, returning to country at the end of life and having a traditional burial are often important for many Aboriginal and Torres Strait Islander people.
Being able to discuss these wishes with family and their health care team means they are more likely to have the best death possible.”
CATSINaM CEO Janine Mohamed ( Pictured above with the on Ken Wyatt ) says these resources will help health care workers open conversations around end-of-life care in a culturally safe way.
See Ministers Press Release below
New resources launched today by the Hon Ken Wyatt, Minister for Indigenous Health, will help Aboriginal and Torres Strait Islander people discuss their end-of-life care wishes with their families and health care teams.
The Aboriginal and Torres Strait Islander Dying to Talk resources were developed in partnership by Palliative Care Australia (PCA) and the Congress of Aboriginal and Torres Strait Islander Nurses and Midwives (CATSINaM).
PCA CEO Liz Callaghan says the resources were developed after consultations with Indigenous health organisations that identified the need for a specific resource for Aboriginal and Torres Strait Islander people.
“The Aboriginal and Torres Strait Islander specific resources have been developed to support advance care planning and end-of-life discussions,” Ms Callaghan said.
“Focus groups were held with Aboriginal and Torres Strait Islander people to understand what barriers they had in discussing their end-of-life care wishes and planning for death. Those focus groups informed the design and content of the Discussion Starter and the Dying to Talk Cards to ensure they were culturally safe and useful.
“I also thank the Australian Indigenous Doctors’ Association and Indigenous Allied Health Australia for their input on this project.”
Palliative Care Australia is funded by the Australian Government.
New resources to help Indigenous Australians broach end of life discussions
A discussion starter about end of life care, specifically developed for Aboriginal and Torres Strait Islander people, was launched at Parliament House by the Minister for Aged Care and Minister for Indigenous Health, Ken Wyatt.
A discussion starter about end of life care, specifically developed for Aboriginal and Torres Strait Islander people, was launched today at Parliament House by the Minister for Aged Care and Minister for Indigenous Health, Ken Wyatt.
Launching the Dying toTalk resources, Minister Wyatt said that starting a discussion about dying is never easy and can be hard when we want to talk to our families and friends about dying but they don’t want to listen.
“Sometimes, we put these discussions off because its confronting and we don’t want to face our own mortality,” he said.
“No matter what the reasons, I am very grateful to live in a country that has such a strong palliative care system in place and palliative care health professionals who help us tackle these discussions.
“I hope that today, with the launch of these new resources, we edge a little closer to making these conversations less difficult and more open.”
The Dying toTalk resources include a culturally appropriate step-by-step guide to make those difficult discussions about death that bit easier and a set of cards that can be used as a tool to start the conversations.
“Throughout the pages of the discussion paper and on the cards it asks us to consider a number of critical questions,” Minister Wyatt said.
“It’s structured. It’s succinct. It’s clear. It helps start the discussion about what would happen if you or a loved one were sick.”
“When you are sick, what would happen to your family? What would happen to your belongings? What sort of health care do you want? How important is it to visit country? How important is it to be on country when you die?
“These are all questions that need to be asked, and answered when we are still able to make our wishes known to the people we care about.”
The Australian Government provided $95,000 to Palliative Care Australia to develop the Dying toTalk resources which has been co-designed with the support of the Congress of Aboriginal and Torres Strait Islander Nurses and Midwives, Indigenous Allied Health Australia and the Australian Indigenous Doctors’ Association.
“The resources will be distributed across Australia to Aboriginal Medical Services and Aboriginal Health Services which will in turn help Aboriginal and Torres Strait Islander people start a discussion about dying in a way that is helpful, constructive and compassionate,” Minister Wyatt said.
“It will help Aboriginal and Torres Strait Islander people have the most difficult of discussions, with respect and dignity.”
“It is great to see that St Vincent’s Health Australia is not only willing to fund this project, but is willing to walk alongside Apunipima and NPAFACS on how we can best help these communities,”
Mrs Patricia Yusia, a Board Member of Apunipima Cape York Health Council, voiced a sigh of relief about the project.
“It’s going to be a learning exercise and an exercise in trust-building. We need to listen to the people in community, and understand what they want from their palliative care service, so that it will cater to the requirements of those who will access it,”
“From there, an appropriate service model can be developed, and then local stories will spread about how members of the communities will die respectfully, at home, on country and with family.”
Associate Prof Mark Boughey, Deputy Director of St Vincent’s Hospital Melbourne’s Centre for Palliative Care, said – first and foremost – he and his colleagues would listen to the communities about their palliative care needs
St Vincent’s Health Australia (SVHA) has committed $450,000 to bring culturally appropriate palliative care services to five Aboriginal and Torres Strait Islander communities in the Northern Peninsula Area (NPA) of Cape York as part of an MOU with Northern Peninsula Area Family and Community Services (NPAFACS) and Apunipima Cape York Health Council (Apunipima).
People living in remote Cape York communities – in particular the five Aboriginal and Torres Strait Islander communities of Bamaga, Seisia, Injinoo, Umagico and New Mapoon – experience some of the highest levels of chronic disease and poorest health outcomes in Australia yet don’t have access to local palliative care. The nearest palliative care is more than 1000 kms away in Cairns.
St Vincent’s Health Australia – the nation’s largest not-for-profit health and aged care provider and a provider of palliative care services for more than 125 years – said it responded to a need, raised by NPAFACS through Apunipima, for expert guidance to develop a high-quality, culturally appropriate palliative care service tailored and accessible to the communities of the Cape.
The MOU outlines SVHA’s commitment over five years to achieve in partnership with NPAFACS, Apunipima and the communities of the NPA, including:
Participation in the Commonwealth Government’s palliative care education program (Program of Experience in the Palliative Approach or PEPA) which includes capacity for palliative care specialists to visit Aboriginal health services to facilitate palliative care learning.
provision of advanced palliative care training for local staff;
community capacity building through ongoing clinical support;
development of a culturally appropriate model of care and a business plan to establish a permanent palliative care service, and;
provision of specialist care and support of palliative care clients via telehealth.
The NPA palliative care project is an extension of an ongoing partnership between St Vincent’s and Apunipima that already provides primary healthcare services to 11 Cape York communities and advocates for 17 others, including those of the Northern Peninsula Area.
“With the highest levels of chronic disease in the country and an average life expectancy of 58 years, there’s considerable need for high-quality and culturally appropriate end of life care in our region,” said Ms Ugari Nona, President, NPAFACS.
“There are currently no palliative care services north of Cairns, some 1000kms away, and certainly no end of life care services appropriate to the cultural requirements of Aboriginal and Torres Strait Islander peoples in Cape York.”
For the people of NPA’s five communities who have a life-limiting illness, accessing end of life care means leaving the community, leaving family and country to travel to Cairns.
“It’s hard enough for those who are dying to move away to Cairns, but it’s also very hard for the family who can’t be with them,” said Councillor Edward Newman, Mayor of the Northern Peninsula Area Regional Council.
“In most cases, our elders go down to Cairns for palliative care, close to death, and often don’t return – and it’s their family, the community that suffers the burden of them dying away.”
Cllr Newman said St Vincent’s commitment to help address NPA’s end of life service needs has been a welcome step, however sustained commitment, for not just the current Elders but the young people who will one day be Elders and Leaders of the communities, it’s an essential requirement for long-term success.
“This five year plan is a good start, and I’m thankful to have the support of St Vincent’s and Apunipima. However to build community capacity to provide culturally appropriate palliative care across NPA in the long-term, we’ll need at least a 20-year plan – a real long-term vision for the future.”
Project oversight will be undertaken by a steering group comprising representatives from Northern Peninsula Area Family and Community Services, Apunipima Cape York Health Council, St Vincent’s Health Australia and St Vincent’s Hospital Melbourne’s Centre for Palliative Care.
” The report has also pointed out ongoing areas of health inequality in Australia, driven by socioeconomic factors and social determinants.
Communities suffering socioeconomic disadvantage continued to have systematically poorer health including lower life expectancy, higher rates of chronic disease and higher smoking rates.
Aboriginal and Torres Strait Islander peoples recorded improved health indicators in some areas, including lower rates for smoking and infant mortality.
However, the report found life expectancy was shorter by 10 years than for non-Indigenous Australians, and Aboriginal and Torres Strait Islander peoples continued to suffer higher rates of diseases such as diabetes, coronary heart disease and end-stage kidney disease.
The impact of risk factors such as smoking, physical inactivity, poor nutrition and harmful alcohol use have been emphasised as significant contributors to Australia’s rising rates of chronic disease.
This is an opportunity for health leaders and the Commonwealth Government to heed the report’s message that lifestyle factors and social determinants are significant contributors to ill-health, and to address the issues of health inequality and the importance of reform across all of our care systems “
The life expectancy gap between Indigenous and non-Indigenous Australians remains about one decade, according to new statistics.
The latest report from the Australian Institute of Health and Welfare (AIHW) said that while health outcomes had improved for Aboriginal and Torres Strait Islander people, they still remain below those of non-Indigenous Australians.
The biennial report, published today, shows Indigenous males born between 2010 and 2012 have a life expectancy of 69.1 years, a decade less than their non-Indigenous counterparts.
The gap for women was slightly lower at 9.5 years.
Between 2009 and 2013, 81 per cent of all Indigenous deaths were of people under 75. This is more than twice the rate of non-Indigenous Australians, which stands at 34 per cent.
The latest statistics come 10 years after the establishment of the Closing the Gap campaign, which aims to end the disparity on life expectancies.
Earlier this year, Prime Minister Malcolm Turnbull pledged that the Government would better engage with Indigenous people in “hope and optimism rather than entrenched despair”.
Indigenous sobriety rate higher than non-Indigenous Australians
While smoking rates have been falling nationally, they remain high among Indigenous Australians, with 44 per cent of Aboriginal and Torres Strait Islander people aged 15 and over describing themselves as a current smoker.
The report states that 42 per cent smoke daily, 2.6 times the rate of their non-Indigenous counterparts.
However, Indigenous Australians drink less alcohol than non-Indigenous counterparts — 26 per cent of Aboriginal and Torres Strait Islander people aged 15 and over had not consumed alcohol in past 12 months.
This equates to a sobriety rate 1.6 times that of non-Indigenous Australians.
Potentially avoidable deaths — categorised as deaths that could have been avoided given timely and effective health care — accounted for 61 per cent of deaths of Indigenous Australians aged up to 74 years between 2009 to 2013.
This was 10 per cent more than their non-Indigenous counterparts.
Australians are living longer than ever but with higher rates of chronic disease, the latest national report card shows.
According to the Australian Institute of Health and Welfare’s Australia’s Health 2016 report, released today, Australian boys can now expect to live into their 80s (80.3), while the life expectancy for girls has reached the mid-80s (84.4).
The single leading cause of death in Australia is coronary heart disease, followed by:
Chronic diseases are becoming more common, due to population growth and ageing. Half of Australians (more than 11 million) have at least one chronic disease. One quarter have two or more.
The most common combination of chronic diseases is arthritis with cardiovascular disease (heart disease and stroke):
Australians have high rates of the biomedical risk factors that increase the risk of heart disease and stroke. Almost a quarter (23%) of Australian adults have high blood pressure and 63% have abnormal levels of cholesterol.
Fron Jackson-Webb, Health + Medicine Editor, The Conversation
The good news is Australians are less likely to smoke and drink at risky levels than in the past.
Australia now has the fourth-lowest smoking rate among 34 OECD countries, at 13% in 2013. This is almost half that of 1991 (24%).
The volume of alcohol Australians consume fell from 10.8 litres per person in 2007–08 to 9.7 litres in 2013–14. This is the lowest level since 1962–63. But 16% of Australians are still drinking to very risky levels: consuming 11 or more standard drinks on one occasion in the past 12 months.
Around eight million Australians have tried illicit drugs in their lifetime, including 2.9 million in the last 12 months. The most commonly used illicit drugs are cannabis (10%), ecstasy (2.5%), methamphetamine (2.1%) and cocaine (2.1%).
Use of methamphetamine has remained stable in recent years. However, more methamphetamine users are opting for crystal (ice) rather than powder (speed).
The bad news is Australians are still struggling with their weight. Around 63% are overweight or obese, up from 56% in 1995. This equates to an average increase of 4.4kg for men and women. One in four children are overweight or obese.
Junk foods high in salt, fat and sugar account for around 35% of adults’ energy intake and around 39% of the energy intake for children and young people.
Most Australians (93%) don’t consume the recommended five serves of vegetables a day and only half eat the recommended two serves of fruit. Just 3% of children eat enough vegetables, though 70% consume the recommended amount of fruit.
Almost half (45%) of adults aged 18 to 64 and 23% of children aren’t meeting the national physical activity recommendations. These are for adults to accumulative 150 to 300 minutes of moderate intensity physical activity or 75 to 150 minutes of vigorous intensity physical activity each week. Children are advised to accumulate at least 60 minutes of moderate to vigorous physical activity every day.
Lifestyle choices have a huge impact on the risk of chronic disease; an estimated 31% of the burden of disease in Australia could have been prevented by reducing risk factors such as smoking, excess weight, risky drinking, physical inactivity and high blood pressure.
Proportion of the burden attributable to the top five risk factors
Preventing chronic disease
Rob Moodie, Professor of Public Health, University of Melbourne
This report outlines a number of positives in Australia’s health – our life expectancy, the health services at our beck and call, major declines in tobacco and road deaths. We’re doing well, it says, but we could do better.
If we took prevention and health promotion far more seriously, we could do a lot better.
The report nominates tobacco use, alcohol, high body mass and physical inactivity as the chief causes of preventable illness and the chief causes of our increasing level of chronic illnesses. Yet national investment in prevention is declining.
Tobacco use is rapidly declining because of really effective measures (plain packaging, advertising bans and increasing price through taxes) that save lives and enormous amounts of money over a lifetime for people who used to smoke.
However, we can’t seem to make any major dent in the commercial, industrial and lifestyle diseases related to junk food and drinks, harmful consumption of alcohol and car dependency.
We’ve known what will work for many years but the power of some of these unhealthy industries is still overwhelming – a situation in which our politicians fear these industries and their associations more than they fear the voters.
Our collective health would have been much better if we’d been able to follow the guidance of our own national task forces and learnt from other countries. The report card should read, “Doing well, but could have done a lot better”.
Fran Baum, Matthew Flinders Distinguished Professor and Foundation Director at the Southgate Institute for Health, Society & Equity, Flinders University
Australia’s Health 2016 shows many Australians are not getting a fair go at health. There is a gradient across society whereby the richer the area you live in, the longer you can expect to live. The difference between the highest and lowest is four years.
Deaths by socioeconomic group: 1 = lowest; 5 = highest
The gradient is evident from early life. Children most at risk of exclusion – those from poor areas who experience problems with education, housing and connectedness – are most likely to die before they reach 15 years from potentially preventable or treatable causes.
Our most glaring inequity is the ten-year life gap between Aboriginal and Torres Strait Islander Australians and others. Indigenous life expectancy is 69.1 years for males and 73.7 years for females.
Compared with the non-Indigenous population, Indigenous Australians are:
3.5 times as likely to have diabetes and four times as likely to be hospitalised with it or to die from it
five times as likely to have end-stage kidney disease
twice as likely to die from an injury
twice as likely to have heart disease.
Australians living outside major cities have higher rates of disease and injury. They also live in environments that make healthy lifestyles choices harder (such as more difficulties buying fresh fruit and vegetables) and so their risk of chronic diseases is increased.
The data on who has private health insurance coverage points to the emergence of a two-tiered health system, where those who can afford to pay receive better access and quality of care. Just 26% of those in the lowest socioeconomic group have cover compared to about 80% of the top group.
Coverage with private health insurance and government health-care cards
Cost of care
Professor Stephen Duckett, Director of the Health Program at Grattan Institute
Over the last decade, health expenditure grew about 5% each year, above the 2.8% average growth in Gross Domestic Product (GDP). As a result, health took up an increasing share of GDP.
Spending more on health means Australia spent less on other things. This is not necessarily bad, as long as the benefits from that increased expenditure – such as increasing life expectancy or increased quality of life – are worth the increased costs.
But spending above GDP growth cannot continue indefinitely. And the last few years saw an increase in rhetoric about health spending increases being “unsustainable” from so-called “futurists” and politicians.
This is the first in the How Australians Die series that focuses on the country’s top five causes of death and how we can drive down rates of these illnesses. Tomorrow’s piece will explore the second leading cause of death: cancers.
The top three WHO leading causes of death for Aboriginal and Torres Strait Islander Australians in 2014 were Ischaemic heart diseases (I20-I25), Diabetes (E10-E14) and Chronic lower respiratory diseases (J40-J47).
Compared to the non-Indigenous population, death rates were 1.7 times higher for Ischaemic heart diseases (I20-I25), 5.9 times higher for Diabetes (E10-E14) and 3.0 times higher for Chronic lower respiratory diseases (J40-J47) for Aboriginal and Torres Strait Islander Australians.
There were 2,914 deaths registered across Australia in 2014 where the deceased person was identified as being of Aboriginal and Torres Strait Islander origin. This represents 1.9% of all deaths registered.
Diseases of the heart and the vessels running to and from it are the number one reason people die in Australia, and we’re not alone. They are the number one cause of death in the world.
According to the Australian Bureau of Statistics, ischaemic heart disease (IHD) is the leading cause of death in Australia. In 2014, 20,173 people died from it.
But ischaemic heart disease is not really the disease itself. Rather, it is the term used to cover the clinical manifestations of coronary heart disease such as heart attacks and angina.
Coronary heart disease
Coronary heart disease is almost always a consequence of atherosclerosis. This is a build-up of cholesterol and other material in the walls of our arteries (tubes that carry blood and oxygen to the heart). The build-up can cause heart attack and block access to the brain, leading to stroke – another of Australia’s top killers.
Ischemia describes insufficient oxygen supply to the heart muscle. Lack of oxygen can cause discomfort in the chest, such as a tightness or squeezing known as angina. This is most often brought on by exercise but is more serious when it happens at rest.
Persistence of angina over time, particularly at rest, can lead to death of some heart muscle. This is called an acute coronary syndrome, or colloquially, a heart attack. We used to call this myocardial infarction. No wonder people find the terminology confusing.
The Australian Bureau of Statistics classifies ischaemic heart disease as the leading cause of death in Australia. Cerebrovascular diseases (stroke) are the third, heart failure is at number seven; hypertensive diseases are at 13, and cardiac arrythmias at 19.
But there is considerable overlap among these, which is why this article has combined them under one umbrella. Hypertension (high blood pressure), for instance, is a major cause of stroke and a risk factor for coronary disease. At least half of heart failure is due to coronary heart disease, while the most common cardiac arrhythmia (irregular heartbeat), atrial fibrillation, is often caused by hypertension, heart failure or coronary heart disease. Further, atrial fibrillation is the cause of about one-third of strokes.
Although ischaemic heart disease is responsible for 20,173 deaths in 2014, the number of deaths due to the above circulatory diseases in 2014 was 38,741.
History of heart disease
Heart disease is not new. CT scans of Egyptian mummies who lived 3,500 years ago show they had narrowings in their arteries, which means they had coronary heart disease. Pharaoh Merneptah, for instance, who died in 1203 BC, had severe coronary disease.
The real and documented epidemic of heart disease occurred after the second world war. This could in part be explained by higher rates of smoking, blood pressure and poor diets after and during the war. Rates increased for three decades at this time.
Then they fell; first in Australia and the United States, and then in other developed countries. Half of this fall could be attributed to public health measures such as tobacco control and availability of blood pressure and cholesterol treatments; the other half to better treatment of people with heart disease.
A province of Finland, North Karelia, initially held the dubious record for the highest rates of heart disease in the world. In the early 1970s, the region had around 672 per 100,000 people dying from heart disease. The mantle then passed to Eastern Europe and Russia where rates are currently 320 per 100,000 people. This is astounding compared to Australia where the rate is 54 per 100,000.
In 1990, heart disease was the third-highest cause of death in developing countries, but by 2013 it was number one. The rates rose from 70 per 100,000 people to 91 per 100,000 people in those years respectively. This is because the developing world acquired the habits of the developed world. There are now more people in the world who are overweight than underweight.
Hypertensive diseases are rising in most developing countries, together with diabetes, while smoking remains common. Infections and trauma used to cause death in people too young to have heart disease, but that is no longer the case due to antibiotics, immunisations and better safety standards.
In 1990, there were 12.3 million deaths globally from heart disease. By 2013, this had risen to 17.3 million. Most of this 40.8% increase occurred in developing countries and in disadvantaged people in developed countries like Australia.
Every country in the world is at some point in the transition from low to high to medium rates of heart disease related to their stage of development. There is nothing inevitable about heart disease being the number one cause of death in Australia or the world as a whole.
The stereotype of a harassed executive having a heart attack no longer applies. Heart disease has become a blue-collar disease or one seen initially in urban populations in developing countries.
Where to from here?
Today (and for the foreseeable future) global rates of heart disease are driven by development, inequality and prosperity. The rate of heart disease deaths was almost double for Australians in the lowest socioeconomic group compared to the highest socioeconomic group, and 20% more for those living in remote to very remote regions compared to those in major cities. They were 40% higher for Indigenous Australians compared to their non-Indigenous counterparts.
For years, we have been comforted by falling rates of heart disease deaths in Australia. But as the population increases, ages and people survive diseases such as cancer earlier in life, the burden on the health system has not been falling to the extent that rates would suggest.
Alarmingly, in people aged 55-69 both rates and the absolute number of people dying from heart disease have increased, according to the latest data.
As Australia has become one of the fattest nations in the world, with rates of diabetes increasing and other metabolic consequences leading to heart disease, overweight and sedentary men and women with multiple risk factors have replaced the thin male smokers who died of heart disease in the 50s.
Response to our NACCHO Aboriginal Health Newspaper from our members, community, stakeholders and Government has been nothing short of sensational over the past 3 years , with feedback from around the country suggesting we really kicked a few positive goals for Aboriginal health.
NACCHO is the national peak body for Aboriginal health. It is entrusted to represent the needs and interests of Aboriginal health on behalf of its members in the national arena.
NACCHO has and continues to be a living embodiment of the aspirations of Aboriginal people
10 good reasons to advertise in the NACCHO Aboriginal Health Newspaper :
Highly targeted health sector from CEO’s to all staff audience
Quality production and guaranteed national distribution in partnership with the award-winning Koori Mail 14,000 printed copies
Spend any surplus dollars before the end of the financial year
Article space offered with ad bookings
Newspaper also distributed at NACCHO events and workshops
1500 copies posted to the CEO’s of Australia’s top Aboriginal health organisations and NGO’s and Government departments
Thank you ‘burst’ through NACCHO’s social media network naming all advertisers
Over 100,000 audited readers
Targeted at Aboriginal consumer / clients
Support NACCHO vision to Close the Gap
Our media partner Koori Mail Turns 25 this week
The Koori Mail is an Australian media institution, 100% owned and controlled by Aboriginal people. The fortnightly newspaper circulates all states and covers the issues that matter the most to black Australians. 25 years since its first print, the Indigenous paper is still breaking ground for Indigenous journalism.
NOW ALSO AVAILABLE
10 June 2016
Final Ads artwork
17 June 2016
29 June 2016
We are now looking to all our members, programs and sector stakeholders for advertising, compelling articles, eye-catching images and commentary for inclusion in our next edition.
Maximum 600 words (word file only) with image
Please Note: All submitted advertising and editorial content is subject to space availability and review by the NACCHO Newspaper editorial committee
Example full Page Ad April and June edition
This 24-page newspaper is produced and distributed as an insert in the Koori Mail, circulating 14,000 full-colour print copies nationally via newsagents and subscriptions.
Our audited readership (Audit Bureau of Circulations) is 100,000 readers!
Our target audience also includes over 1,500 NACCHO member and affiliate health organisations, relevant government departments, subsidiary indigenous health services and suppliers, as well as the end-users of Australian Indigenous health services nationally.
Your advertising support means we can build this newspaper to a cost-neutral endeavour, thereby guaranteeing its future.
Note: the earlier you book your ad or submit an article for consideration, the better placement we can offer in the printed newspaper. All prices are GST inclusive. Discounts are available to not-for-profits, NACCHO member organisations and industry stakeholders. All prices include artwork if required.
“It’s very important that it belongs to the local community.And the community chose the stories, artwork and analogies that would be best to make it work.
The river is compared to the blood flow through the body,” says Rachel. “If it’s dammed with silt and trees then nothing gets past, like when an artery gets blocked. Or if the river floods it kills the land it goes over, which can be like a bleed in the brain.”
Rachel Peake, Stroke Care Coordinator in from Hunter New England Health.
A book of personal stroke stories from Aboriginal community members is proving effective at getting authentic, relatable information across to others in the community and raising stroke awareness.
All the words in Stroke: Written by the Mob for the Mob come from the Aboriginal people of the Kamilaroi/Gomeroi/Gamilaraay/Gamilaroi nations. The booklet was published by the Hunter New England Local Health District of NSW.
“It’s very important that it belongs to the local community,” says Rachel Peake, Stroke Care Coordinator in from Hunter New England Health. “And the community chose the stories, artwork and analogies that would be best to make it work.”
The stories were gathered through a series of yarning sessions, which let people direct the conversation themselves. This makes sure that nothing important is missed, and that the authentic voices of the participants come through.
The result is a relaxed mix of humour and art. This includes the painting on the booklet’s cover, a representation of stroke and the brain created by students from the Peel High School. This picture also demonstrates the analogy of the river, which is central to the booklet’s message.
“The river is compared to the blood flow through the body,” says Rachel. “If it’s dammed with silt and trees then nothing gets past, like when an artery gets blocked. Or if the river floods it kills the land it goes over, which can be like a bleed in the brain.”
Since its publication the booklet has taken on a life of its own, with hardly any copies left from the original print run of 2000. This is partly due to people’s pride in their own family members, demonstrating that the booklet is reaching the community it was created for.
As Rachel says, “This is the message the community wanted: if they’re given a voice, they can educate their own people.”
You can find the Stroke: Written by the Mob for the Mob booklet on enableme and InformMe, as well as a series of videos of respected community members telling their own stories.
“We know that Aboriginal and Torres Strait Islander people are up to three times more likely to have a stroke than non-Indigenous Australians, The good news is most strokes are preventable and treatable. However communities need to be empowered to protect themselves from this insidious disease.
In Australia, stroke is the leading cause of long-term disability in adults, accounting for 25 per cent of all chronic disability. The NSF reports that roughly 50,000 strokes occur per year with over 437,000 people living with stroke across the country. While severity varies, two thirds of victims, like Tania, are left with impeding disabilities.
The Stroke Foundation has called on the Federal Government to fund an urgent $44 million campaign to address the gap in stroke care.”
Stroke Foundation Chief Executive Officer Sharon McGowan
The Stroke Foundation is calling for increased stroke awareness initiatives in Aboriginal and Torres Strait Islander communities.
Sharon McGowan said better education about the risks and signs of stroke was crucial to help close the unacceptable health gap which threatens the lives of thousands of people each year.
“Stroke is a serious medical emergency which requires urgent medical attention. However too many Aboriginal and Torres Strait Islanders are unable to recognise the signs of stroke.
“We believe everyone deserves the chance to lead a healthy life. More must be done to educate people about stroke prevention and awareness in the community.
“We are calling on the Federal Government to fund a national campaign to increase awareness of the signs of stroke and how people should respond,” she said.
The Stroke Foundation has a simple acronym to help people remember the signs of stroke:
Face – has their mouth drooped?
Arms – can they raise both of their arms above their head?
Speech – is their speech slurred? Can they understand what you’re saying?
Time – Call triple zero (000) immediately. Do not delay.
Ms McGowan said it was vital that more Aboriginal and Torres Strait Islander people were able to recognise these signs in themselves and their family members.
“Stroke is a sudden interruption of blood flow to the brain. Without the blood to deliver oxygen, the stroke affected parts of the brain start to die. This can lead of death or significant disability for those who survive a large stroke,’’ she said.
“Unfortunately awareness of the signs of stroke in Indigenous communities is low. It is vital that people can recognise the signs of stroke and know to call triple zero immediately
For Tania Lewis, an Awabakal woman, stroke was something that only happened to older people.
“Never had I ever come across one or heard much about them. I had nothing to do with them,” she tells.
But in 2011, Tania suffered a severe stroke at the age of 39 that would leave her with permanent right-sided hemiplegia – paralysis of one side of the body.
Tania with husband Leonard at the Barmedman Mineral Pool in 2007. Barmedman is Len’s home town and where the couple were married in 1989.
“When I woke up, I didn’t know what was going on. I couldn’t communicate. I couldn’t tell anyone I was still here. It was really scary. I’d never seen the effects of a stroke.
“First, I lost my voice, then my vision, my [ability to] swallow and my movement of all my body parts. I lost all my bowel and bladder function. I’ve still got bad sight but I can see again. My speech took about six months.”
In Australia, stroke is the leading cause of long-term disability in adults, accounting for 25 per cent of all chronic disability. The NSF reports that roughly 50,000 strokes occur per year with over 437,000 people living with stroke across the country. While severity varies, two thirds of victims, like Tania, are left with impeding disabilities.
Tania Lewis, an Awabakal woman, and her husband Len, a Wiradjuri man, have been best friends since childhood. Now married 27 years, they live in Bonnels Bay, NSW with their teenage daughter, Faith. In 2011, their relationship faced the ultimate test when a severe stroke left Tania paralysed. This is their story.
The burden of stroke doesn’t just fall on the patient, but can take a significant toll on family and carers.
“The doctor at the hospital tried to take Power of Attorney and Guardianship away from me and give it to the Guardianship Board, because he didn’t believe that [my husband] Len or anyone could look after me,” Tania recalls.
“I was put through hell. I figured life wasn’t worth living anymore because they took everything away from me. I couldn’t go home to my family. So I tried to off myself.
I figured life wasn’t worth living anymore because they took everything away from me. I couldn’t go home to my family.
“Then all of a sudden, one day the doctor said, ‘You can go home. We can’t rehabilitate you anymore’. At home, I was having seizures for a while. My hubby wouldn’t sleep. He and his mum would take shifts looking after me. We tried to get assistance but there was nothing for young people. So one day, my husband collapsed on the lounge room floor from exhaustion. It was just a nightmare. That’s how I ended up in aged care.”
Tania spent the next two and a half years between three aged care facilities.
“I wouldn’t wish it upon nobody,” she says.
It was during her nightly ritual of chatting with her daughter via Facebook that Tania typed “young people in nursing homes” into Google. The search engine’s results would lead to her life-changing encounter with the YPINH.
“With help from the Aboriginal Disability Network, they advocated to get me out and get the right support equipment at home. Whatever I need, physio, OT – they’ve got my back. I can’t thank them enough for what they’ve done for me.”
Today, Tania is working with the Aboriginal Disability Network, helping Indigenous Australians navigate their way through the National Healthcare System.
It has long been recognised that Aboriginal and Torres Strait Islander people have a life expectancy that is approximately 20 years less than non-Indigenous Australians (Australian Bureau of Statistics). Recent data from the ABS shows that up to 80 per cent of the mortality gap can be attributed to chronic diseases such as heart disease, stroke, diabetes and kidney disease.
For many Aboriginal communities, especially those in remote regions, socio-economic factors play an important role. Kerin O’Dea from Darwin’s Menzies School of Health Research cites unemployment, poor education outcomes and limited access to fresh foods as key factors in her paper, Preventable chronic diseases among Indigenous Australians.
Lifestyle related risks such as smoking, alcohol misuse, stress, poor diet, and inadequate physical activity also need to be addressed, according to the Australian Institute of Health and Welfare .
But the first step, McGowan says, is for indigenous stroke sufferers to recognise the signs of a stroke in themselves and their family members. The NSF recommends the F.A.S.T. test as the most effective way to remember the most common signs of a stroke.
Face: Check their face. Has their mouth drooped? Arms: Can they lift both arms? Speech: Is their speech slurred? Do they understand you? Time: Is critical. If you see any of these signs call 000 straight away.
“If I had known that because I’d lost my vision I had suffered a stroke, I could’ve put two and two together and got help, but I didn’t know anything,” Tania says.
“I was a heavy smoker, but not anymore – no way. Life’s too important. I didn’t ever know anything about a stroke – I was more thinking when you smoke, you can have lung problems and lose your fingers, like on the packets. But they don’t say anything about a stroke – they don’t advertise that stuff.”
The Stroke Foundation has called on the Federal Government to fund an urgent $44 million campaign to address the gap in stroke care. For more information on stroke and the campaign, visit strokefoundation.com.au.
Declaration of Interest : Colin Cowell Editor of NACCHO NEWSPAPER is a recent #stokesurvivor , following this advice he was in hospital within 15 minutes avoiding serious damage
The delivery of high-quality, culturally sensitive and respectful palliative care services to Indigenous communities is critically important.
In the Australian context, a recent press release from NACCHO highlights some of the key issues, including the need to partner with Indigenous communities to develop and implement culturally appropriate services.
In the spirit of respectful, inclusive communication and ongoing learning, we invite you to join us for an online “Palliative Care Yarning” tweet-chat on 31st March 2016.
This tweet-chat will be an opportunity to discuss some key issues in palliative care for Indigenous and First Nation peoples, including Aboriginal and Torres Strait Islander people in Australia.
When? Thursday, 31st March 2016
4:00pm AWST Perth
5:30pm ACST Darwin
6:00pm AEST Brisbane
6:30pm ACDT Adelaide
7:00pm AEDT Canberra, Sydney, Melbourne, Hobart
9:00pm Wellington, Auckland, Christchruch
What? Topics for discussion:
T1 What does high quality Indigenous palliative care mean to you?
T2 How can we improve equity in palliative care delivery to Indigenous communities across remote, regional and urban settings?
T3 How can existing services collaborate with Indigenous communities in palliative care? (eg training, advocacy, service delivery)
T4 How will the services of the future deliver high quality Indigenous palliative care?
As always, we ask that you include the topic tag (e.g. T1) in your response to each topic, and include the #PALLANZ hashtag in your response.
As the #PALLANZ community is international, we respectfully encourage use of the term ‘Indigenous people’ where referring to Indigenous and First Nations people and communities from across the world during the tweet-chat. The @Palliverse moderator for this tweet-chat (@csinclair28) will be responsive to any specific requests or feedback from participants regarding appropriate and respectful language.
You don’t have to be an expert, a Twitter whiz, or even live in Australia or New Zealand to join – in fact, we strongly encourage those new to Twitter and from beyond our shores to join us and share your views!
Palliative care for Aboriginal and Torres Strait Islander people needs to be delivered with cultural awareness and respect, says Palliative Care Australia (PCA) chief executive officer (CEO) Liz Callaghan.
Ms Callaghan says quality palliative care for Aboriginal and Torres Strait Islander people occurred in some parts of the country, where services have worked with the community’s organisations to develop appropriate models of care, but there are many parts of Australia where this is not the case.
“Palliative care, like the rest of the health system, is not one size fits all. It should recognise the individual and that includes acknowledging the needs of an Aboriginal person or a Torres Strait Islander person.
“For many Aboriginal or Torres Strait Islander people returning to country to die is important, as is telling the story of their life.”
Ms Callaghan says the Implementation Plan for the National Aboriginal and Torres Strait Islander Health Plan 2013-2023 was significant.
“This plan takes forward the vision for the National Aboriginal and Torres Strait Islander Health Plan 2013-2023 but the focus for palliative care is limited to older Aboriginal and Torres Strait Islander people, their families and carers. There are no key performance indicators for palliative care.
“While some aspects of palliative care are recognised in the Health Plan, but we would like to see measurable goals put in place to drive change where it is needed.”
According to Ms Callaghan the latest Close the Gap report shows improving health outcomes for Aboriginal and Torres Strait Islander people, but there is still some way to go.
“This is reflected in palliative care. While the report does not examine palliative care, we know anecdotally that culturally appropriate care is not done well everywhere in Australia. Some parts of the county offer exceptional levels of care, but we need to see that good work spread.
“Culturally inappropriate care at the end of life can cause unnecessary suffering and distress for Aboriginal and Torres Strait Islanders, their families and communities.”
She says it is important that non-indigenous health care workers develop culturally safe practices through education, ongoing training and appropriate engagement with local Aboriginal and Torres Strait Islander communities.
“Many Aboriginal and Torres Strait Islander people have one or multiple chronic illnesses, particularly as they age. These people should have access to culturally appropriate care at the end of life that will help them to manage the symptoms of their illness so they can continue to live their lives well,” Ms Callaghan says.
Do you belong to an Aboriginal or Torres Strait Islander community that could benefit from learning more about caring for people when they are getting ready to ‘finish up’?
PEPA offers a tailored workshop program for Aboriginal and Torres Strait Islander communities and healthcare providers predominantly caring for Indigenous people. This includes most staff from Aboriginal Health Services (Indigenous or non-Indigenous) and healthcare providers in Indigenous communities. A culturally safe program for Aboriginal and Torres Strait Islander health workers, health practitioners, hospital liaison officers and community workers, in most cases, elders and other community members may be invited to attend events.
The workshop aims to increase community awareness in caring for people who are unwell and not going to get better. This program is flexible and customised to local needs within each state and territory.
The program is underpinned by the principle of Cultural Respect in that interventions and services should ‘not unwittingly compromise the cultural rights, practices, values and expectations of Aboriginal and Torres Strait Islander peoples’*. The program has been developed with steering from the PEPA for Aboriginal and Torres Strait Islander Health Workers Reference Group, which includes representatives from Aboriginal and Torres Strait Islander health, policy and education sectors.