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Hi, When I had radiation I was offered physio, OT, dietitian, social worker etc by the nurse the first time I went. I did see the social worker (I had non breast cancer problems) and she put me onto community services for someone who does things like domestic help, help taking me shopping etc. The companies who do these sorts of things often have waiting lists and don't always have the resources to help, but they are there for those in need.
I'd suggest if you need domestic help talk to a social worker.
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Oh I so agree about the referrals - and the prescriptions! I am on some medications for life, and think I am old enough to manage it all by my myself. Pet peeve is chemists who ask if you are happy on the medication. I appreciate it's largely conversational chit chat, but you do wonder what they plan to do if someone says they're not. Recommend something else?1
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Hey ladies, just in regard to referrals, my oncologist told me I will need a new referral to see her for my next appointment and she told me to ask for an indefinite referral so I don't have to keep chasing it up - so must be able to do it
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Hey! I have to agree wih Socoda, I get indefinite referrals and Ive been doing this 5yrs with no renewal, specifically for ongoing care with my Breast Surgeon and Oncologist. Cheers Melinda xo0
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@melclarity ... I wonder then?? Thats what the Northern Hospital told me when I handed them an indefinite - that it only lasts 3 years.... I guess I will have to wait & see if they ask for a new one in 3 years0
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Hi! I have a dear old friend that went to see a Specialist recently and was told that he needed a new referral. He had previously had an "indefinite" (funny word in this instance) referral but was told it has been over 12 months since your last visit so it is no longer valid.
I think we need clarity around this. We all hand over these indefinite referrals to make life easier for ourselves and the staff at the specialists office however the interpretation differs!
As we know when you are in active treatment the last thing you want is to be bogged down with paperwork and having to do return visits unnecessarily.0 -
I recently got an indefinite referral for my oncologist from my GP. My GP said that indefinite referrals aren't actually indefinite, but last for three years. But that is still better than constantly having to get new referrals!!0
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I was told byt The Northern its a medicare thing, they only recognise indefinite as 3 years & wont pay if a new referral isn't presented...0
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@Di_BCNA
My feedback would be that this info about Care/Management Plans needs to be in as many places as possible. We are all different in when this might be needed and in how/when we access info. Not everyone has a breast care nurse (I never have had any contact) and my GP was not very good with anything about this (only after I asked). I found out from reading posts on here and then googling for more info.
I guess I also never saw myself as needing something like this. Thought I could take care of everything myself. But I have benefited twice now from these Plans. First to have access to a physio a couple of months after I finished treatment. She told me to get one actually, when I first contacted her for an appointment.
Then again 2 years down the track when I wanted help with bone density issues. Again the facility I contacted told me how to organise the Plan.
This network has been my best source of information and I nearly always find things on here just when I recognise the need. There is so much learning takes place when you are first diagnosed but that learning is ongoing and I still find my circumstances and needs changing now 3 1/2 years after diagnosis. I never knew anything much about who or what was available to help with recovery, side effects etc.
I imagine there are a lot of people out there suffering because they simply don't know where to access the help they need or even that there is someone who could help. So, yes put it out there in as many places as possible. 1 -
@Deanne
Thanks Deanne -- I think you're right. Navigating the health system is a constantly frustrating exercise in trying to find out what you don't know and what you need to know. I think it's a great reminder to not feel silly about asking questions all the time, or being embarrassed to HAVE to keep asking. I know I hate feeling silly when I have to ask lots of questions -- it's something I'm still working on!
I'll make sure I flag that section in the My Journey Kit information guide as needing review and we'll keep an eye out for other places for this information. Thanks again to everyone who has raised it here and made suggestions.
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@Cate64 that is odd, maybe it depends where you go and who specialists are? Dont know, my surgeon is private and at a private hospital. X0
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@Di_BCNA
another important thing is that every state/territory has different rules.
Lympodema financial help is different depending on where you live.1 -
@Soldier Crab
I know! Makes it even more confusing, doesn't it? Which reminds me -- for anyone who hasn't caught up, we did make quite a big update to the Financial and Practical Assistance fact sheet in July this year, so there's quite a bit of information in there about the different financial schemes available (PATS, Utility relief schemes, financial counselling, community assistance organisations etc.). If anyone would like to have a look, here's a link to the PDF on the BCNA website: https://www.bcna.org.au/media/3658/bcna-financial-assist-fact-sheet.pdf.
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