Forum Discussion
Battle Undies
I joined this forum in 2010 but didn't really participate until my recurrence in 2016.
There has been some great stuff happening here in the last couple of years--support and humour, the sharing of resources, hint, tips and experiences. There have been occasions where forum members have joined forces to advocate against changes they disagreed with. BCNA initiated some consultation to discuss the way the forum works and the function of the moderators.
I've had a couple of robust discussions with the mods via personal messages, which I think is the respectful way to conduct those dialogs. Each to their own, I suppose. I wouldn't have their job for quids, walking the line between fair and reasonable and trying to shepherd a couple of hundred distressed souls through harrowing experiences is not an enviable task.
I'm seeing some anger and frustration with the forum lately which I think could be better directed. But where?
I'm at the stage where I am interested in resuming some of my advocacy activities. Advocacy was something that I found very satisfying in the past, but I think I needed to be a couple of years out of diagnosis, again, to be able to engage without adding another burden to an already stressful situation.
BCNA does have opportunities for members to participate in their advocacy objectives, but there are many other ways to use your personal story to change the system. I can see people here with great skills and experience but along with that can come anger and frustration: biting your fellow travelers, though tempting on occasions, is probably wasting energy. I'm fairly pissed off about a number of things related to BC V2, but how do I channel that?
Charity, as they say, begins at home. I'll be avoiding getting involved with any scraps and squabble I see here, but what I have been doing is asking my breast care nurses what they think is the most likely point of leverage to improve services. They are telling me the lack of funding for local lymphedema services is something that is could be changed by some consumer pressure. I've now got the contact details for the hospital Board and some inside running on how to contact the relevant ministers and what part state and federal funding and local allocation of resources plays in this dilemma
Ladies, and gents, if you have some energy that needs to be expended maybe that's a better reason to don the battle undies.
Marg xx
35 Replies
- @zoffiel the post above from @lrb_03 probably gives a hint as to why the services are lacking in the hospital you are honing in. No medicare benefits scheme item number. Hopefully the ALA advocacy will help
Take care - Hi, @iserbrown, the lymphoedema site you found is the Australasian Lymphology Association website, the peak body, in Australia, regarding lymphoedema. The area that wevcan see has consumer information, including a find a practitioner link, and general lymphoedema information. The health professionals information is behind a membership "wall". There is actually quite a lot of good information avalable online. The larger problem is access to services. Very few places have good public, funded services for lymphoedema, and even where they do it is a constant battle to maintain funding for the service. Lymphoedema doesn't have a medicare benifits scheme item number, which can make obtaining public funding for a service very challenging.
The ALA is currently trying to advocate and raise awareness around this issue - Maybe - we have 2 metro Encore facilities here both in public hospitals- one north , one south - with hydrotherapy pools at quieter times when perhaps under-utilised.
Given we nearly had only one as private hydrotherapy pool access cost was prohibitive for the Y I think the public hospital pools must have been at a lower rate.
Is a Victorian issue really -just was curious about hydrotherapy pools in Victorian regional public hospitals. The NSW Encore program is extensive including in the regions. - Ok I misunderstood
In my view if you are honing in one facility (Hospital) you probably need to start with their budget to see what their allocation of staff specialists are for your area of interest.
A submission to the Board to spark the interest in a service that is under resourced.
Good luck with it
The subject matter sounds like a subject for a thesis See, several of you have great ideas for your own projects--things that interest any of us personally tend to lead to investigation of options and recognition of gaps in service. I think you should consider what you might be able to do either collectively or as individuals
I'm resolutely sticking to my guns and asking awkward questions about how a hospital that services over 40,000 people has:
- No dedicated lymphedema service
- No arrangements to cover the absence of the only community physio --who quadruples as a pediatric, post surgical, chronic disease and cancer rehab physio--while she is on long service leave for a couple of months.
The physio is a personal friend of mine, she tells me that she could easily fill another two days a week with lymphedema patients that she either has to turn away or spend inadequate time with.
Timing can be everything with an advocacy campaign, there is irrefutable evidence that funding for this service is inadequate. Everyone will blame everyone else for that shortfall.
You can bet that the CEO's PA would be replaced under similar circumstances because they would have budgeted for it. All community physio appointments have been suspended. Urgent cases will be referred to private practitioners through the post acute funding stream. No one seems to be able to explain that to me in terms a lay person can understand. Revise that, no-one knows much about that process because it rarely happens. Not good enough. At all.
@Joannie
After a few good, to not -so-good, to terrible (local!) products, I now get my sleeve and hand from Jobst. Made to measure, wears wonderfully well, and does the job.
- @Joanie no as you are in a pool up to your neck
- Sorry @Afraser found ny folder but only a general document and a couple on non water exercise.
