Suggestions for letter to federal minister for health

onemargie

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 PBS
3. No out of pockets for private patients
4.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 ❤️

Zoffiel

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.

onemargie

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 ❤️

steplightly

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

Romla

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.

steplightly

Afraser

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.

Romla

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 .

steplightly

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

Zoffiel

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.

Afraser

That's a really good idea. Does anyone have a direct contact?

Romla

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 

Romla

He might have graduate students who might like to research post bc life. 

Romla

Flinders Uni also has an interest in this area called the Finding My Way program - an online course for people with bc  

Romla

The program focusses on physical/mental well being and the practical aspects mentioned impact on these 

onemargie

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