1. Accessing super and or Centrelink payments for people with cancer - get rid of the red tape and make it easier to apply and receive 2. Prolia and other cancer drugs to be put on the PBS3. No out of pockets for private patients4.no threshold to claim travelling and fuel costs to and from treatment 5. Funding for post care e.g allied health professionals This is just a start as I have to walk my pooches then get ready for work but feel free to add to the list and I'll write the letter Margie ❤️

Hi everyone I will give some further thought to this as I have already written to bcna policy team to possibly advocate for a "disability light" a time framed one not income light and have been advised they havent looked into this concept yet It would work along the lines of what zoffiel said and assessable along the whole treatment and recovery process It could be "Whole team" assessed including allied health people. Icome at dsp rate plus any carer payment and all entitlements for primary support I will keep refining thoughts This is an incredibly important issue given the numbers of dignosis each week Ali x

Hi Romla, I guess I am an advocate at heart and have a very strong sense of Social Justice. For me personally the Centrelink stuff isn't an issue at this point in time, which I am very thankful for. While I have used all sick days for surgery and a brief time off work and then kept working through my only treatment radiation, I am also thankful I remained well right through. I would like to be part of the chorus for change if it is at all possible. I will be reading the financial impact report by BCNA and also doing investigations into DSP criteria and other payment criteria and see if I can see possible options to suggest in a helpful way.

Strongly agree with dealing with one issue at a time. I know it's frustrating but several issues will simply guarantee it will get bounced around from one Department to another, as no-one will have responsibility for all. And nothing will come of it. Anything outside a Minister's power to fix (preferably relatively painlessly) won't get looked at. Agree about social security as a top priority (just look at the words - seriously!!), but regional disadvantage is also a powerful jab in the ribs (votes!). In social security, one of the main thrusts needs to be the narrow, narrow borderline between being a productive, tax paying responsible member of the workforce and facing penury because of illness and not being able to access an adequate safety net, even though it's there - it's not about seeking handouts, it's about equity and better recognition of impact. I'm all for enforced screenings of I, Daniel Blake for MPs and government staff. Happy to be contacted if I can help with anything.

I've been on committees that have banged away at some of these issues for years. If I can make a suggestion, keep this simple.Access to sickness benifits for people actively having cancer treatment, regardless of what their employment status was when diagnosed, should be 'doable'. It should also be possible to build a more flexible policy regarding temporary disability payments to cover us while we are trying to figure out if our bodies are ever going to recover enough to go back to work.There has already been a fair bit of publicity about those of us that slip through the cracks and end up in dire financial difficulties. That issue tacks nicely onto the report that BCNA has just released regarding the costs of BC treatment. What they have stated in the report is that they have not made any allowances for loss of income when calculating their figures. If you start looking at the costs of having cancer apart from the out of pocket medical items, those figures would be truly shocking. As far as the gap payments for private health--unfortunately that isn't a ministerial issue unless they want to start regulating what medicos can charge for services. They will not go there. Any changes like that would reflect across the whole health system.Access to rehab services, particularly in rural and regional areas is a major, major issue. That also ties with the Patient Transport Assistance payments. I've been lobbying for ten years to have a more realistic limit brought in. The response from two successive health ministers has been 'If we lower the limit to 75km, then the people who live 74km away will still complain.' Seriously.I don't know what everyone else thinks, but I reckon you are better off attacking one issue, or two that tie tightly together. My vote probably goes to the problems with social security. Marg.

I think you're right Marg. the Centrelink issue is the main one hey. If it's ok I'll copy paste some of what you've said and looks like a long slog ahead after what you've already tried to do. Maybe the media thing will help I don't know ??? Margie ❤️

Suggestions for letter to federal minister for health

18 Replies

onemargie
Member
8 years ago
Thanks marg for your encouragement I'll give it a crack anyway and let you all know xx
Zoffiel
Member
8 years ago
Don't give up yet, @onemargie
The thing about advocacy is that new people have to keep joining the fight. The pressure has to be maintained. I was heavily involved in a variety of committees for years and worked closely with the Cancer Council Victoria. I firmly believe that five years on a committee is long enough, so fresh heads need to get involved.
Yes, it can all seem a bit pointless, but these are real issues that will only be addressed if we keep banging on about them.
melclarity
Member
8 years ago
@Zoffiel I actually have to agree with you, we need the backing and support to get things looked into and moving. Loveyoursister I think would be interested in helping to advocate for better assistance on all levels.
onemargie
Member
8 years ago
Sounds like I'll be pushing shit up hill then doesn't it.souns like going to the media is gong to end up with no change either. How fucked is it that we have to be on here on this forum in the first place number one and number two have to even speak about the issues we've all bought up on this post alone. They shouldn't even be an issue in the first place for fucks sake. Margie
Romla
Member
8 years ago
The program focusses on physical/mental well being and the practical aspects mentioned impact on these
Romla
Member
8 years ago
Flinders Uni also has an interest in this area called the Finding My Way program - an online course for people with bc
Romla
Member
8 years ago
He might have graduate students who might like to research post bc life.
Romla
Member
8 years ago
I have been talking to Professor Ian Olver today - he has recently returned to SAto head the Samson Institute at Unisa and was formerly head of Cancer Council Australia .He is an internationally recognized medical oncologist and a compassionate human being - he has both profile and opportunity to research these aspects of bc patients - might be worth a shot. He is an early riser and chatted by emails to me at 6am this morning - his email address is online
Afraser
Member
8 years ago
That's a really good idea. Does anyone have a direct contact?
Zoffiel
Member
8 years ago
Loveyoursister is a new player with a high pubic profile at the moment While their initial focus may be research for cure, I'd wonder how receptive they would be to using a tidal wave of public support to lobby for the sort of changes in general survivorship welfare that are long over due.
Bless you all at @BCNA but your wheels turn slowly (though surely) and I wonder if a more 'agile' consumer led online push may pave the way for a research based approach from the mother ship later.
Noise makes news. I think we are in accord that the focus needs to be narrow if it is to travel any distance. 2 years ago I'd have had a go at this. I'm too tired now and would just stuff it up.