Suggestions for letter to federal minister for health

Yes I agree Romla and Afraaer  We need a united voice all singing one song 

I think whilst there are many issues that need addressing it is better to focus on one issue and garner as many fellow voices together thru an organised lobby group such as BCNA .In my recent experience emails from individuals such as myself whilst resulting in further information from appropriate bodies may yield little impetus for change .

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.

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. 

Hi @steplightly have recently covered all bases with emails re Prolia - happy to provide my original email and the responses from the distributor Amgen , the Office of the Federal Minister for health and others . Essentially the Federal gov has complex admin processes in play for a drug to be registered on PBS. The distributor is motivated by profit and the number of women who might use Prolia due to bc treatment may not be large enough. On top of this is Federal budget deficit considerations of which the Health budget is a major player.

I applaud your courageous decision however to speak up about matters that concern you - it is the only way change ultimately occurs however be aware it may be a long slog and requires many voices.

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

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 ❤️

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.