I read, today, an intersting article on the ABC website about some of the issues faced by rural and regional people who have breast cancer or are at high risk of developing it. I'm not as remote as the woman who was featured, but even here there are struggles.One of the biggest issues is affordable specialist care. There are few, if any, public services and you do not always get informed about them. You get referred to the company that covers your region even if there are more affordable services within reach. I've spent ten years fighting this fight, and I know what the facts are.ABC interviewed an oncologist who agreed that, yes, there are unique challenges that lead to poor outcomes for county folk. Distance is one thing, cost is another. If you are on a pension or low income and have to fork out specialist fees that are well above the metropolitan rates it makes a shitty situation even worse. It is a pity ABC did not ask that individual what they, and their business, was doing to address equity of access for rural and regional people. I really do wish they had asked that. I wonder what the answer would be? Last time I asked a member of that business that exact question, in a public forum, the response was 'Be careful what you wish for, you wouldn't want to be waiting in clinics like the big public hospitals.' Really. Most of us have either money or time. You should not have to go into debt to fund services that are bulk billed elsewhere. This shit infuriates me.

This is the first time I have posted a comment. I have been "lurking" and reading since I was diagnosed in June 2017. So here goes! I am very remote, living some 2,300 kms from my treatment centre. Accessing treatment as an older remote woman is hard. I drive 220 kms (a 3 hour trip, allowing for flooded creeks, poor roads and delays due to cattle on the road) before I even get to the airport. A travel day to Perth usually begins at 8:00 am and ends in Perth at 5;00 pm. A clinic visit requires a week away from home with all the expense whilst "living" on an aged pension.I would like to see implemented a system similar to the Lion's Bush Vision truck. I am very lucky that once a year a Lion's Bush Vision truck visits my town equipped with all the necessary gear to undertake appropriate vision exams. This truck has saved my sight. It would be wonderful if a similar program could be put in place to provide our annual mammograms to those of us who now no longer qualify for the Breastscreen program. It would save 1 trip a year with all the associated costs with being away from home, not only financial but the social and emotional costs. Surely such a system cannot be too hard to implement. I certainly am not the only remote woman with breast cancer and I will admit that I have entertained the idea of not attending clinic visits for after care because of the cost and distance involved.

Sister, I am going to stick my 2 bobs worth in and say you are right on the nail. It is a lack of vision, creativity but more so funding. I have been told by medical staff that if I want better health care and better access to health care I need to consider moving to the city. At our local hospital we now have the ridiculous position of fly in fly out doctors!! If the Lions organisation can put together a big truck to bring top class opthalmology services once a year to remote regions it cannot be too difficult to put into practice a breast cancer monitoring truck for those of us in the regions requiring after care. Alas Sister I think you are correct - it is $$$$.Ah, the Kimberley. Yes it is on bucket lists but most people visit once. Very few say they would want to live here. Those of us who do, love it but pay a big price. Zoffiel, remembeer the advert "a cuppa tea, a Bex and a good lie down". Younger members may have to "google" what a Bex is! I have not had to deal with European Wasps but I did have to deal with a bungara (large lizard) trying to come through the cat door! The joys of life in the bush!

Hi all -great discussion. I so feel for those in rural and remote areas have also done some work there. I really do hope @Zoffiel that you can get to the meeting and please tell us how the heckling goes. I think we might all love a photo of you in your beekeepers suit

Agreed @Zoffiel. Would have liked to retire in a more rural location but a recent experience with country medicine changed it. My husband broke his humerus due to a bike accident over Christmas down at our most popular beachside town Victor Harbor. They had no doctor in the hospital when thousands were holidaying down there over Christmas and only 1 nurse in casualty over the holidays. All 8 beds in casualty became full , my husband lay next to a bloke being resuscitated after cardiac arrest and the single nurse was so busy I cleaned the cuts and abrasions off my husband. Whilst Victor is the grey capital of SA normally we felt it was god’s waiting room for other reasons.

No, I didn't think that I'd be blowing my retirement savings on routine bills well before I was ready to leave the workforce either. And yes, if you are going to get sick this is probably the best country in the world to be living in. It's just so frustrating sometimes. There is also the irony of you living in a region that is on the bucket list for so many travelers--same as here. People say Oh, I love the Northeast. Yeah, it can be pretty, but that isn't much use when you need services that are either hugely expensive or nonexistent. Right, that's my grumble for the day. I was up before dawn in a beekeeper's suit brandishing a cordless blower with an improvised extension hose blasting permethrin into a couple of European wasp nests. Something else I can't afford to get someone else to do. It must have been psyching myself up for that that put me in a combative mood. I'll have a cup of tea and a nice lie down now.

Makes me see red | BCNA Online Network

kmakm
Member
7 years ago
Sic 'im @Zoffiel
MoiraC
Member
7 years ago
Hi all -great discussion. I so feel for those in rural and remote areas have also done some work there. I really do hope @Zoffiel that you can get to the meeting and please tell us how the heckling goes. I think we might all love a photo of you in your beekeepers suit
Sister
Member
7 years ago
If I were him @zoffiel , I'd be shaking in my boots - best not go in looking like a terrorist, though...wait until you can see the whites of his eyes!
Zoffiel
Member
7 years ago
Gargh indeed, Kate.
I've just discovered that the individual who got my panties in a bunch this morning is speaking at a regional forum later this month. You ripper. I keep saying I won't get back into organized advocacy, but I might just go and have a bit of a heckle. I'm an accomplished heckler and if I can convince someone to give me a microphone at question time I won't have to stand on my chair and yell. Let's see if he can answer the question his colleague tried so desperately to dodge last year. We've had some interesting exchanges over the years and I'm sure he will be thrilled to see me.
Maybe I'll don my beekeepers suit (only $38:62 delivered) I think it is quite fetching and an ideal outfit to wear when dealing with poisonous creatures. They probably won't let me carry the blower full of permethrin.
Annie_C
Member
7 years ago
Sister, I am going to stick my 2 bobs worth in and say you are right on the nail. It is a lack of vision, creativity but more so funding. I have been told by medical staff that if I want better health care and better access to health care I need to consider moving to the city. At our local hospital we now have the ridiculous position of fly in fly out doctors!!
If the Lions organisation can put together a big truck to bring top class opthalmology services once a year to remote regions it cannot be too difficult to put into practice a breast cancer monitoring truck for those of us in the regions requiring after care. Alas Sister I think you are correct - it is $$$$.
Ah, the Kimberley. Yes it is on bucket lists but most people visit once. Very few say they would want to live here. Those of us who do, love it but pay a big price.
Zoffiel, remembeer the advert "a cuppa tea, a Bex and a good lie down". Younger members may have to "google" what a Bex is! I have not had to deal with European Wasps but I did have to deal with a bungara (large lizard) trying to come through the cat door! The joys of life in the bush!
kmakm
Member
7 years ago
Politics. NBN. Vested interests. Lobbyists. Squeaky wheels. Entrenched power structures. It's like how roads get far more funding than public transport. Public transport obviously serves the greater good, but they don't make money. Despite the fact that they serve the community and the environment far better in the long run.

Time and again the case is made and proven that prevention, health screening and early intervention provides much better medical outcomes that ultimately save huge amounts of money. The problem is they take a lot of money up front and there's nothing shiny to photograph at a ribbon cutting ceremonies.

And once again, gender. Women's pain is not taken as seriously as men's. It's harder for us to get adequate pain relief. We are still often being told it's in our minds, we're being hysterical. We are expected to accept it and suck it up. Endometriosis is a prime example. Fortunately this condition is finally getting a bit more attention. Just yesterday @tigerbeth's male oncologist told her an AI had "no side effects". I mean, ffs, that borders on negligent! The leaflet that comes with the pills has a huge list of possible side effects. You may not get any, or only a few, but to say it has NO side effects is willfully ignorant.

Garrgh this all makes me SO angry :#

https://www.smh.com.au/lifestyle/health-and-wellness/the-surreal-things-women-do-to-have-their-pain-taken-seriously-20180220-h0wct8.html
Sister
Member
7 years ago
It is appalling that this is the case in 21st century Australia. Why? Is it lack of funding? Lack of vision and creativity? Or protection of turf (and therefore $).
Zoffiel
Member
7 years ago
No, I didn't think that I'd be blowing my retirement savings on routine bills well before I was ready to leave the workforce either. And yes, if you are going to get sick this is probably the best country in the world to be living in. It's just so frustrating sometimes. There is also the irony of you living in a region that is on the bucket list for so many travelers--same as here. People say Oh, I love the Northeast. Yeah, it can be pretty, but that isn't much use when you need services that are either hugely expensive or nonexistent.
Right, that's my grumble for the day. I was up before dawn in a beekeeper's suit brandishing a cordless blower with an improvised extension hose blasting permethrin into a couple of European wasp nests. Something else I can't afford to get someone else to do. It must have been psyching myself up for that that put me in a combative mood. I'll have a cup of tea and a nice lie down now.
Annie_C
Member
7 years ago
I agree with you on the issue of common sense @Zoffiel; it certainly is lacking. Western Australia's health care system is "City Centrified". All major health problems are automatically referred to city based health systems.
The only problem I can see with access to Breastscreen services is just that- screening only. Couple that with the van visiting the Kimberley region every 2 years leads to an unsatisfactory service. Also you have to be in town or available for the 2 weeks in June every second year the van visits. I was not in June 2015 due to family engagement and so missed out on a screening. So, prior to June 2017 when my world slipped on its axis and tossed me off, my previous mammogram was June 2013.
Telehealth is not big here in the Kimberley, usually due to equipment problems, lack of internet access, lack of bandwidth and often lack of health/medical staff.
Please understand that I am grateful to the system that sends me to Perth every 6 months even if it is for a 2 hour clinic visit, but I would rather get on an aeroplane and fly to Perth and get on another plane and go somewhere exciting - not a clinic visit. Travel and clinic visits on an age pension do not gel. Both are not financially possible. This experience is not what I had planned for retirement!!
Zoffiel
Member
7 years ago
The qualifying for a mammogram through Breastscreen is something BCNA does have a position on https://www.bcna.org.au/about-us/advocacy-agenda-2018/position-statements/breastscreen-australia/
I think you have exactly the sort of story that would be very salient in that campaign @AnneC It is a huge impost on you to have to travel so far for what can be, in my experience, a very brief review. Particularly if it is only bloody red tape that prevents you doing something much more sensible, cost effective and convenient.
Teleconferencing for medical appointments in remote areas is something that just doesn't seem to be getting 'legs' either. Imagine being able to attend a doctor closer to you and have them do a consultation with your specialists online..Yes, there could be risks involved, but surely for reviews it could be an option if there are no huge red flags that you are bringing to the appointment.
Common sense just isn't that common. I've had issues with Breastscreen here insisting on referring those needing follow up screens to their headquarters in Melbourne when there are perfectly suitable options much closer to home. It's all about the money trail and it is disgraceful. Another example of people not being properly informed of their options because the system has been set up to do something that is not in the patients best interests. Grrr.