BCNA's Helpline refocus - some changes being made to the Helpline

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Comments

  • Zoffiel
    Zoffiel Member Posts: 3,374
    Regarding communications, which may be useful now we have attracted some corporate attention:

    In linguistics, the Gunning fog index is a readability test for English writing. The index estimates the years of formal education a person needs to understand the text on the first reading. For instance, a fog index of 12 requires the reading level of a United States high school senior (around 18 years old). The test was developed in 1952 by Robert Gunning, an American businessman who had been involved in newspaper and textbook publishing.[1]

    The fog index is commonly used to confirm that text can be read easily by the intended audience. Texts for a wide audience generally need a fog index less than 12. Texts requiring near-universal understanding generally need an index less than 8.

    The email about the changes comes in at a robust 17.7. Which is language appropriate for someone with post grad quals

    I rest my case.

  • June1952
    June1952 Member Posts: 1,935
    Hi @Zoffiel - well said in your post - you may be a bit slow to read of this issue but I am sure your letter direct to Kristen will make a huge difference.  As you say, you have supported this forum and BCNA for a very long time so I am surprised you were not one of the select few asked for input 😂😂  Please do send a PM to Kirsten as well.  I am sure she will be willing to speak with you to gain your perspective on the changes.
  • Kirsten_BCNA
    Kirsten_BCNA Staff Posts: 57
    Thank you all for your comments and I can certainly hear many frustrations.  

    I would welcome a chance to talk to you and hear your issues directly and clarify any questions you have.

    I am very happy for you to email me so we can arrange a time to set up a phone call.  I am also very happy to have these out of hours to help with those who are working.  To arrange a time please email me on kpilatti@bcna.org.au 

    I want to reassure you that the Helpline is still very much up and running with our trained breast cancer expert staff able to help answer your questions. Almost all of the questions that we receive from more than 9,000 Australians each year have never required a nurse but I am very happy to discuss this further with you. 
  • arpie
    arpie Member Posts: 8,080
    @wendy55 - I am SO sorry that you had to go thru this added stress when you were already feeling 'down' - specially when all you wanted ... was some compassion and understanding.  Thank you for posting your heartfelt, sad post. 

    Your recent (non) helpline experience (and it was 2 weeks BEFORE the supposed 'stop date')  is EXACTLY why I put the email up for everyone to read & respond to (and remember this is a PUBLIC POST!) 

    This shouldn't have happened to you and I don't want it to happen to anyone else (but sadly, I know it already HAS! :(  )

    More than one member has already said they did not receive the email so there would still be more who are not even aware that the Helpline has been mutilated .... we were so blessed having Nurses like Rosie and Giovanna on board  - who knew the ins & outs of the whole Breast Cancer scene - and their absence is a sad loss to the members' credibility of BCNA.

    You are 100% correct, Wendy, that without the Breast Cancer Nurse and Mets Counselling Service, the helpline almost becomes redundant, as people will mostly be directed offsite for counselling, or to already published material on the site - that friendly 'I understand what you are going thru, I may be able to help' chat (eg the indepth knowledge off the top of their heads about existing trials and new ones coming up) just won't be there.  :(  I think that just the thought of not having that expertise available to members - may drive members away from BCNA.

    Basically ...  If it ain't broke - DON'T try & FIX IT! 

    The Patient's perspective of Breast Care Nurses (keeping in mind that a LOT of members - particularly in rural areas - don't get to see one at all during their breast cancer treatment.)
    https://www.tandfonline.com/doi/abs/10.5172/conu.2006.23.1.46 

    For those in Vic that live around the Mornington Peninsula area ... Jo Lovelock is A Breast Cancer Nurse, who's HAD breast cancer who you can contact.  0477 770 360
    https://www.morningtonpeninsulamagazine.com.au/jos-loving-touch-is-making-a-difference/
  • Keeping_positive1
    Keeping_positive1 Member Posts: 555
    Almost 9,000 questions asked each year, could have been answered by the Helpline staff?  If that is the case then they will not need to direct callers to ring Cancer Council or other organizations to speak with a nurse there.  I think the transparency within which BCNA are operating is as clear as mud.  Nurses are already undervalued, and this stance just makes it worse.  Bring back a nurse for the members to chat with, and so be it if I ask something within the phone call that can be answered by someone else.  Trained nurses are gold, even if BCNA think otherwise!
  • AllyJay
    AllyJay Member Posts: 957
    On page one of this thread, BCNA say that there will no longer be qualified nurses available on the phone as the comment above on this page says that 9,000 questions asked per annum, didn't need a nurse. However.... there will be quote" trained expert breast cancer staff". Who are they, where did they train and what were they trained in? Do they work off of flow charts where they ask a question and the reply sends them off in one stream, which then replicates down the line...follow the arrow (it's not hard)? My 'favourite', and I use that word very much with glossal organ firmly wedged in buccal pouch, that is tongue in cheek, is the word :Onboarding"...relating to medical professionals. I think it means... wait for it...passing the buck. When desperate people need a trained nurse, they need a trained nurse, not some "trained expert". As some may know, I used to be a very active skydiver, with 1, 634 jump under my belt. According to statistics, a reserve parachute is needed in about 1% of all jumps. Now these little doodads are important to have, expensive and bulky too. I only ever used mine once, not the 16 times that the statistics said I should, but f**k me George...I was glad I had one. Maybe it is only one in a hundred, or one in five hundred who need a nurse...right then... right now...not to be "onboarded" to someone completely unknown. Also, there is still all this harping on about this app, that whatsit and the next gadget. Not all members have or want these electronic nuisances impeding  their peace and quiet. We all matter. Rather cut expenses on office furniture (yes I read the financial report of 2020, which was very hard to find, I might add)...or vehicles...or pot plants..or some other person, but not the persons at the pointy end, please.
  • Keeping_positive1
    Keeping_positive1 Member Posts: 555
    edited July 2021
    Wouldn't you think a medical person would be of benefit to have amongst the fold at BCNA?  Perhaps employ a nurse part-time?
  • Zoffiel
    Zoffiel Member Posts: 3,374
    Thanks @June1952. Unfortunately, what I said was so critical, hateful and obscene it needed to be removed. I'll say it again, later. Like a lady.
  • Zoffiel
    Zoffiel Member Posts: 3,374
    Right, let's try again. Like a lady. Because I really like having my tone monitored. 

    I have been around here for a long time. Over the years I've quietly connected many members with the nurses knowing that they would receive kind and well informed advice. In many cases Rosie or Giovanna had already been keeping an eye on the person in distress. There was an existing relationship which could then develop into something long term. Ive never detected any 'confusion' about that

    I'm pretty unhappy about what this organisation is choosing to spend money on. Not sure if I can say this, but I'll give it a crack. The people who bcna are supposed to be supporting do not need another marketing guru, or impenetrable communications loaded with mothering statements. They don't need an anonymous call centre that shoots them off to other organisations.

     They need compassionate, expert advice. From someone they know and trust.

    This member is getting pretty disillusioned with the whole organisation. This member also hopes that she is not being classified as one of the 'pink sector' mentioned in a previous post. That would be truly offensive. 
  • Julez1958
    Julez1958 Member Posts: 1,241
    I had a look at the BCNA material on the CEO and it contains this statement:
    ” Kirsten believes members are at the heart of BCNA”.
    I find that what has occurred here does not accord with that statement.
    There was no survey of members prior to making these major changes ( and as others have said, they will impact the most vulnerable members) .
    Furthermore, the statement about the phone calls not needing a nurse appears to have been plucked out of the air and not in accordance with the emails on this thread.
    I know my own phone call with Giovanna seeking advice about my possible double mastectomy and reconstruction was very much informed by her experience and knowledge as a breast cancer nurse and was invaluable.
    I don’t think a series of one on one phone calls where the aim is to silence the members with the energy to raise this issue, I think there needs to be a proper formal consultation with the members.
    Also ,the Board know about this?
  • Cath62
    Cath62 Member Posts: 1,449
    We hope all these messages resonate @Kirsten_BCNA. Please we know this is not you personally but we ask you to escalate our concerns. Maybe the CEO can hold a zoom call with us all especially since we are 'the heart of BCNA'.
  • iserbrown
    iserbrown Member Posts: 5,716
    Some comments on here are they are not technology savvy hence Zoom won't cut it for all.