Aboriginal Health #racism and #cancer #WCPH2017 : The inoperable, unstoppable @Proudblacksista Colleen Lavelle and other strong stories

“People will forget what you said, people will forget what you did,

but people will never forget how you made them feel. – Maya Angelou

These strong words are so true. I look at how my behaviour has changed with the brain tumour. I shudder when I think of the things I have said to my children.

I think it was about eight or nine years ago I was diagnosed with a brain tumour,

The reason I’m vague on it is I actually don’t think it’s a day to remember. It’s not a celebratory day.

Thinking about my four children motivates me to keep going

I’ll be buggered if I am going to have the [child safety] department or someone like that come in and take care of my kids.”

Cancer is a leading cause of death among Indigenous Australians, but fear, stigma and shame mean it is rarely spoken about.

Ms Colleen Lavelle’s a Wakka Wakka woman, from Queenslandknown as @Proudbacksista  tumour has been deemed inoperable, which means it’s considered terminal.

Hear or Download hear her Radio National Interview 

Or

Watch ABC TV report

Photo above from previous NACCHO News Alert

NACCHO Aboriginal Health : Death by #racism: Is bigotry in the health system harming Indigenous patients ?

NACCHO and Cancer over 60 articles

NACCHO Cultural Safety

Federal Government Website

Cancer in Aboriginal and Torres Strait Islander people of Australia

Colleen lives in Brisbane and through her blog she has become a support person for other Aboriginal people facing cancer, helping them with practical matters and being a friendly voice on the other end of a phone line.

She also accompanies some patients to hospital appointments and would like to see it made easier for Aboriginal volunteers to do such work.

“If you come from the Torres Strait and you’ve come down here and someone’s speaking to you really fast, rattling off all these medical things you’ll kind of be going, ‘what?’,” she said.

“If you’ve got someone, one of your own mob there it makes it easier.”

 Recently Colleen wrote for Croakey /We Public Health

Close the Gap should be so much more than a photo opportunity or a morning tea. There are ways that everyone can help. I am going to share ten simple ones that I have been trying to get happening for years.

  1. More Indigenous hospital liaison officers – Whatever title you use, we need more people in the hospital working for us. Big hospitals often only employ two, that is not even close to being enough. They should be employed around the clock.
  2. Indigenous hospital volunteers – Hospitals need to have a separate army of volunteers, who deal exclusively with Indigenous patients, to spend time with the person from a remote area in a city hospital. To sit with someone having a long treatment. Just a friendly face in an alien environment.
  3. Cultural Awareness Training (CAT) – Should be compulsory with all hospital staff, from the cleaner to the director. This training should address the issues and problems in health, but also needs to be localised to have the Traditional Owners from the area to share their knowledge. To truly let people understand, I am not talking a one of two-hour session a year, but a long, fully-formed training, with refresher courses each year. All medical and Allied Health professionals should do, and be assessed on, Cultural Awareness on a regular basis, and this needs to be registered. It is not good enough when a health professional does one course on Indigenous People and 20 years later still think that was enough. General Practice also need to have CAT, even if they are not signed on to CTG, because they are going to be seeing Indigenous patients.
  4. General Practice incentive payments – GPs must lose their incentive payments if they sign on for the incentive and, during that time they don’t see an Indigenous patient. Again, they should lose the bonus if they are signed up and do not annotate the prescriptions for patients.
  5. Indigenous people have the right of choice – We should be able to see a private GP or the local Indigenous Medical Service, or both if we want, but some funding seems to steer us towards the Indigenous Medical Service. This can be hard if it’s a long way from your home and you have to depend on public transport.
  6. Employ more Indigenous people in the health sector, not just  doctors – It can be as simple as a receptionist, who makes a difference.
  7. Indigenous patients must be heard – Not just in the surgery but on national committees. Our experiences must be more than just fodder for researchers or funding applications.
  8. Buck-passing – PHNs, Division of General Practices and other organisations, must stop handing over Indigenous units to others. You have patients that see so many doctors, you have to be responsible. Handing units over to Indigenous Medical Services etc, is passing the buck. It takes away our free choice. It is a way of saying you are not interested in our wellbeing.
  9. Respect – Invite Elders to your hospital, clinic, whatever, on a regular basis, consider having an Elder in residence at your local hospital.
  10. Recognise and celebrate our important dates – It smacks of racism if a hospital is decked out in green and shamrocks everywhere for St Patrick’s day and come NAIDOC, there is a morning tea, hidden away, with only a few people involved. Share it. Don’t even get me started on Australia Day. (Okay, just a little bit) Understand that we don’t think it’s great to wave the flag or want to be in your premises when you have complete overkill of decorations and start talking about how wonderful it is.

The unspoken illness: Cancer in Aboriginal communities

Cancer is a leading cause of death among Indigenous Australians, but fear, stigma and shame mean it is rarely spoken about.

Aboriginal Australians are less likely to be diagnosed with cancer, but significantly more likely to die of the disease.

Often, symptoms and diagnoses are ignored because of the fear surrounding cancer.

Cancer in Aboriginal communities:

  • Indigenous Australians have a slightly lower rate of cancer diagnosis than non-Indigenous Australians
  • The Aboriginal cancer mortality rate is 30 per cent higher
  • Indigenous Australians are more likely to be diagnosed when cancer is advanced
  • They are less likely to participate in cancer screening programs
  • Lung cancer is the most common cancer among Indigenous Australians

Lateline spoke to some Aboriginal people about how they dealt being diagnosed and how they’re trying to break down taboos in their communities.

Rodney Graham: Bowel cancer

Rodney

Rodney Graham literally ran away from his diagnosis in 2015.

For seven months he didn’t go back to his doctor after he was told he had bowel cancer.

Eventually though, he mustered the courage to deal with the diagnosis and get treatment.

He had to travel 700 kilometres from his community of Woorabinda, in central Queensland, to Brisbane to be operated on.

“A big city like that, I don’t even like going to [Rockhampton] really. I can’t stand Rocky. But Brisbane that was a step up you know,” he said.

Now Mr Graham is happy to talk about his illness and wants to help others in his community face up to cancer.

“It might happen to someone else and they say, ‘Well we’ll go see Rodney, he knows all about it’,” he said.

“I’ll give them some advice and see how it goes from there.”

Mr Graham gave up drinking years ago and he said it probably saved his life.

“I think if I was still drinking I wouldn’t be here, you know what I mean,” he said.

Aunty Tina Rankin: Cervical cancer

Aunty Tina has survived cancer, but seen several close relatives succumb to the disease.

“One minute you’re sitting down there with that person, that person is so healthy, and then the next time you see them they’re that sick, they’re that small you can hardly recognise them,” she said.

“People think of it as the killer disease.

“They see people in cancer wards and to look at those people it puts them into a depressed state, and they go home thinking that they’re going to end up like that.”

Aunty Tina said people need to know there is help available for cancer sufferers.

She is part of the Woorabinda Women’s Group who are working to raise awareness in the community about cancer so sufferers don’t feel isolated.

“When you’re well and up and running, you’ve got that many friends,” she said.

“All of a sudden you get sick, you find out you’ve got cancer, you’ve got nobody, it feels as if you’re on your own.

“There were times when I just wanted to go and commit suicide through the depression.

“But I sit down and think about things, I pull myself out of that deep hole.”

Sevese Isaro: Lost his father to cancer

Sevese Isaro, or Tatay as he’s known locally, is Woorabinda’s radio host.

He knows first-hand how hard it can be to talk about cancer, having lost his father to the disease just a few years ago.

“Everyone just tried to stop talking about it,” he said.

“I fell back into drinking, everybody just went their own way.”

He said many people don’t go to the doctor when they suspect they could have cancer.

“They know that there’s something wrong with them, but they don’t want to go because they’re frightened of the answer,” he said.

“I guess people once they hear the word cancer they start getting frightened and they automatically give up hope.”

If you or anyone you know needs help contact your local ACCHO or call

NACCHO Aboriginal Health : Death by #racism: Is bigotry in the health system harming Indigenous patients ?

 racism

” Death by racism should be a category on death certificates, because the racism in hospitals is hindering the recovery of many Aboriginal and Torres Strait Islander people.

Spend some time as a patient in a hospital and you soon find out that the medical profession is full of bigots and people who might not consider themselves racist, but have preconceived ideas on race and hold outdated beliefs in racial stereotypes.”

 We need cultural awareness programs on all levels of the system, writes Colleen Lavelle for IndigenousX : Our stories, our way” – each week, a new guest hosts the @IndigenousX Twitter account to discuss topics of interest to them as Aboriginal and/or Torres Strait Islander people. Produced with assistance of Guardian Australia staff.

NACCHO background info

Read previous 69 articles NACCHO Aboriginal health and racism

Read previous 10 articles NACCHO Aboriginal health / Cultural safety

 ” The National Cultural Respect Framework for Aboriginal and Torres Strait Islander Health 2016–2026 (the Framework) was recently launched by the Australian Health Ministers’ Advisory Council .

This ten year framework seeks to guide delivery of culturally safe, responsive, and quality health care to Aboriginal and Torres Strait Islander people and communities.

Download the COAG Cultural Respect Framework here :

cultural_respect_framework_1december2016_1

I have been in and out of hospital for years with a brain tumour and have experienced the bigotry within the system first hand. I have also collected stories from Indigenous people around the country and a common thread is either: “Is it me or do they treat all of us like this?” or “Am I being overly sensitive?”

Indigenous cancer patients have even had pain relief denied to them. This might happen for a couple of reasons. First, because apparently some people think we Indigenous people can cope with more pain than our European counterparts. Let me state now that that ethnocentric view is not true. Another common view is that we are “faking it” to get drugs. Now, I don’t know about you, but if someone has cancer and is crying in pain, it’s pretty obvious they are not trying to get some cheap thrills.

A similar misconception is that we are drunk. I have even heard of cancer patients having their blood alcohol level tested before a doctor will see them. This assumption that we all take drugs or drink is outdated and just insulting.

Traditional people from remote communities have had to deal with their cultural mores being completely overlooked. Men have been shamed by having a young female nurse attend to them, when a male nurse is required. The same happens to our women too: a male attendant will try to do something that should only be done with or by a female. And when women ask to have another female in with them, they are quite often overlooked. I can’t understand why our cultural needs are overlooked when other peoples have their cultural rules respected.

The medical system seems so against us in so many ways, particularly if we are sent to a hospital away from home and English is not our first language. Good luck trying to find a translator to help! Governments, both at state and federal level can’t say they are doing all they can when our needs are not even considered important. All we hear are excuses like, “The cost is prohibitive for translators, patient transport, mobile medical units …”

We are the first people of this country and as such we shouldn’t be constantly overlooked. Perhaps fewer trips to the Gold Coast and a little bit more money into Indigenous health could help.

There are ways to make the road to good health better. For starters, no doctor or nurse should be allowed to work with Aboriginal people unless they have had cultural awareness training. It should be a requirement that all medical professionals do a cultural awareness course, with a refresher course after every year. Make it part of the accreditation process. It should be a part of the Close The Gap scheme that every general practice has to sign on to do cultural awareness. Even if it’s just one person in the practice doing it online. There could also be an incentive, such as the practice receives money for each Indigenous patient they see.

If every doctor and nurse across the country had this training and if hospitals and health executives spent quality time with Aboriginal and Torres Strait Islander patients, they might learn we are not so different. We might have some different needs, but they shouldn’t compromise the levels of compassion, caring and proper medial attention that we need.