Home Health and wellbeing

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



  • Emma17Emma17 Member Posts: 46
    edited July 2021
    BCNA has always been about metrics and money.  There are unrelenting appeals for donations and merchandise-for-sale every time one visits the home page.

    Its informational resources (e.g. webcasts, My Journey, Hopes & Hurdles) have been financed by the public - federal government grants, corporate partnerships, donations, and fundraising campaigns at national (Bakers Delight) and local levels - but are not freely available.  At every turn BCNA requires names, postcodes, diagnostic info., etc. in order to obtain access to resources.
    Similar non-profits such as Cancer Council, Pink Hope, National Breast Cancer Foundation, Heart Foundation, Osteoporosis Australia, Diabetes Australia et al. provide their informational resources freely to the public without the hurdles imposed by BCNA's metrics/data collection scheme.  I suspect the metrics collection is dictated by the Board.

  • TonyaMTonyaM Member Posts: 2,745
    I was surprised and disappointed that these important phone counseling services are to be cut.I can understand a reduction in hours/days if lack of callers reflected that- but we’ve not been told those statistics. I think it’s a shame to do this in the middle of Covid lockdowns too when many people are confined to home. There are many ladies in my bc support group who aren’t tech savy and just can’t use My Journey online or ‘symptom tracker’. The phone is their preferred communication mode.
    Didn’t Greg Hunt just throw a $6 mil grant BCNA’s way? Where’s that going? Look,I get it,money is dispersed where needed across the organization but surely the phone counseling service is important. Couldn’t there be a compromise and at least keep counseling services for  those with metastatic bc? Or perhaps limited days? Stats would surely show which days had highest volume of counseling calls.And in regards to Giovanna, she was terrific and will be sorely missed.
  • AllyJayAllyJay Member Posts: 896
    @TonyaM...I agree. That was a point I made the other day. Many people "of a certain age" are not very tech savvy. I'm a member of a writing group where most of the members are no longer young. The great majority of them have said to other members who say something like..."I email that page to you"...or "There's a link on wherever"...only to be cut short with a reply of, "Sorry, I don't know how to do all that, can you post it to me". Ditto other groups I belong to. From what I know, advancing age is a huge determinator in developing breast cancer, so obviously there's a huge cohort of people who, like me, only know the basics. The generation of people who are very familiar with all these gadgets will come to the fore in a few years, but in the mean time, I, and many others are cut off from knowledge via this means. In any case, if I'm in crisis, I want to actually speak to someone who has ears and a mouth...I don't want to use my thumbs to click over a tiny screen for support.
  • FLCloverFLClover Sydney Member Posts: 1,455
    @AllyJay 👌🏻👌🏻 I’m younger, and still not very tech savvy. I haven’t even opened the My Journey to yet cos I can already see myself stressing over it. I also want a person to speak to in a crisis. And in terms of older women, you’re absolutely right. My mum is 58, and doesn’t even know how to turn a computer on. I’m not even sure she understand its purpose. She can only use a very simple phone to call, and can’t even text cos she can’t remember how. And I’m not exaggerating. She’s hopeless with technology.  Woe to her if she had to be on a site like this, and I hope it never happens. 

    @TonyaM made some extremely good points 👌🏻👌🏻👌🏻. 

    @Emma17 I’d noticed that too, but chose to ignore it. A bit hard to ignore now though, with these recent changes. Makes it even more obvious it’s not really about the members. 
  • AllyJayAllyJay Member Posts: 896
    @FLClover...I'm 63..58 when diagnosed. I think I'm one of the few people over the age of 10 who doesn't have a mobile phone...I hate them with a passion. When I was first diagnosed, my adult daughter gave me her old phone with $20.00 credit on it. After much practice, she felt happier for me having the damn thing. I made one phone call on it, and that was a practice call. A few weeks later, I tried to use it, and found out that I had no credit. I was horrified to find that the money runs out after thirty days and that you have to buy more credit. What absolute rubbish. For that $20.00, I could have phoned some bloke in Outer Mongolia, riding on his yak, and spoken to him for half and hour. I asked my daughter if that meant that when you were, say two days off from your credit expiring, and you had fifteen dollars left, did you then phone every Dick, Tom and Harry that you knew, just to get your money's worth. No thank you...I've managed to live for half a century without one and don't feel the need. As far as the computer goes, I can get onto google and facebook and also this group. If I come across something that needs to be opened or sent, or photos, I have to ask my husband or daughter to help. It may be all straightforward for some, but not for others. Once my husband got a bit short with me about how simple and straightforward it all was. I passed him my knitting pattern and asked him to do the next row. K12, SKPO, yfwd P2, K2tog, yfwd, K12 and so on. I added that there was a glossary which explained it all and that, really, it was quite simple and straightforward. He never castigated me again. Yes, there are Luddites out there, but hey, we matter too.
  • June1952June1952 Regional VictoriaMember Posts: 1,523
    Please, everyone who has commented on this thread, please send a personal message direct to the CEO to ensure she knows first hand of your concerns.  She may not have time or inclination to read all posts but she (or her assistant) will read personal messages.  BCNA has to keep up with member views.

    @Kirsten_BCNA will get your message to her.  
  • FLCloverFLClover Sydney Member Posts: 1,455
    @AllyJay my mum knits too, she has since she was a teenager. She’s knitted us and our kids soooo many fantastic outfits. She knits blankets and rugs too. I think she used the same line on us when we got impatient with her after explaining for the upteenth time how to open a text message (not send it, just open one to read it). But she had a point. I’ve always rejected her offers to teach me to knit cos it looks so complicated, yet she could do it with her eyes closed. So we all started being more patient. But even so, I still disagree that everyone needs to be technologically skilled. There’s still a simple world out there, and it need to be retained and respected. Not everyone is into gadgets and they shouldn’t have to be. And not everyone should need a credit card to pay for basic services either. We need to keep the world a bit simpler. I think the pre-tech world was a lot less stressful in some ways  and much kinder. 
  • TonyaMTonyaM Member Posts: 2,745
    Hey @FLClover and @AllyJay, I reckon we are doing really well to be on this online network! Heaps more Luddites( love that word,don’t know what it means) out there,way worse than us,struggling away.I will also mention those who are in low socioeconomic groups and can’t afford internet and not to mention those in regional areas who CAN’T get internet connection.Even some suburbs on the outskirts of Sydney can’t get connection like Kenthurst for goodness sake! They have landlines.
    I agree with everyone here that when you are in crisis mode,you want to speak to a real person. That’s why there’s Lifeline,Beyond Blue, Cancer Council etc etc. so you can talk to a sympathetic expert.Tell me if I’m wrong,but McGrath nurses don’t have a telephone counseling service do they? They are attached to hospitals and yes,you could call them IF they were available but they don’t man telephones.Cancer Council are great but have to cover a wide range of cancers and may not have bc expertise at the time of your call.I just feel it’s a shame to dismantle a unique service instead of streamlining it to keep it going for  those really need it.
  • AfraserAfraser MelbourneMember Posts: 4,018
    Can I commend @June1952’s message and ask those with concerns/suggestions to send them to the CEO? While it’s useful to share these online, it’s really important that they become formal requests. Including provisions of statistics. 
  • AllyJayAllyJay Member Posts: 896
    @June1952...The email refers to "your preferred BCNA contact". This is my preferred BCNA contact. This forum, which all members have easy access to, and where each person can see what other members are feeling. If people in the office have, as you said, "neither the time nor the inclination" to read the posts, then that in and of itself says a lot to me about how "in touch" some are. This is where the rubber meets the road for many members for day to day camaraderie, support and general chit chat. This is where those in offices will see who we are, how we tick and how we feel. When we do then have to phone into the helpline, surely a three dimensional idea of who the person in crisis is, on the other end of the line is important? Not for the member who has phoned to hear "Sorry, who did you say you are?  Hang on a sec..tick..tick..tick..tick...aaah yes, here you are...how can I help you?" as your details appear on a screen before them. I'd be happier for something along the lines of "Hello XYZ, how can I help you today", and then a general comment to show the caller that the person has at least an idea of who's on the phone, before the frantic tapping of the keyboard to get a rough idea of who they are speaking to? I never open and read emails. I have an email for the bank and so on, but really, there could be months between checking in.
  • Emma17Emma17 Member Posts: 46
    edited July 2021
    It defies logic and commonsense that a Breast Cancer-specific non-profit, founded by Lyn Swinburne 20+ years ago to provide support to the people directly affected by breast cancer, cut specialty cancer nurses from its Helpline/Member Support Services (or whatever corporate double-speak has been coined for the new 'unit').

    I fear that the Helpline staff who went over and above their Position Descriptions - strictly Breast Cancer - may have inadvertently contributed to the cut in services.  Giovanna is acknowledged across the BCNA community as a woman possessed of profound compassion and empathy.  She supported and counselled people diagnosed with breast cancer and also volunteered her research skills and compassion to those whose loved ones may have been struck by a related health issue.  And here's where the metrics enter, once again - duration of phone calls, numbers of phone calls, subject matter of phone calls, time spent on research, X, Y, & Z...  

    BCNA's Pink Lady logo and website is hopelessly outdated, the barrier-free publicly available information hasn't been updated in a long time, but be sure BCNA's sophisticated telephone and Online Network tracking systems are collecting and analysing data at a granular level.

    God forbid any BCNA supports are offloaded to McGrath.  The McGrath nurse knew nothing about me when she phoned me prior to surgery (she was noticeably absent from pre-surgery appts w/surgeon).  She engaged in guessing when I asked her specific questions about lymphoscintigraphy (her guesses contradicted the surgeon's information sheet) so I dismissed her.  I had no need for her and I mandated that my file was closed to her.  Someone on these boards has mentioned the lack of initiative by McGrath nurses and guessed that nurses become a McGrath nurse for the 'prestige'.  My sense of their motivation to become a McGrath nurse is more selfishly-driven - they are tired of life on the wards so they seek a desk job with regular hours where they can paste on their 'empathy face' and rub a few arms and shoulders...supposedly this is 'support'.

    @June1952 I'm following your advice and directing this to @Kirsten_BCNA
  • June1952June1952 Regional VictoriaMember Posts: 1,523
    Thank you @Emma17.  The more members who send a personal message direct to Kirsten, the more they will understand the need for such an important position within the organisation and hopefully restore the role ASAP.

    @FLClover, you raise some important issues re the requirement for technology - my brother-in-law who had dementia and lives in a nursing home is expected to have and use a plastic card !!!  Not happening.

    @TonyaM - you are correct !  McGrath nurses can be excellent apparently but not every BC patient has access to one.

    The BCNA position is the first point of call for members of all ages when needing assistance with BC issues and that role has the information and expertise but can still refer callers elsewhere if there is a need - they know where the help is.  Mostly that first call is the only call necessary and is an immediate response.
  • Keeping_positive1Keeping_positive1 Member Posts: 434
    Taking away the breast care specialist to chat with when we are in need of support is a big step backwards.  My guess is the helpline will be the next to go!  With all the telephone numbers already provided on the BCNA website, who will ever need to speak to a person from BCNA?  BCNA has lost its heart!
  • Julez1958Julez1958 SydneyMember Posts: 607
    I want to echo the comments on value ( or not) of breast cancer nurses.
    I was a private patient at St Vincent’s Private Hospital in Sydney for my mastectomy.
    I was allocated a breast care nurse but I never spoke to her or met her before my surgery.
    When I did see her she seemed very overworked and even though she promised to follow me up she never did.
    I ended up calling BCN helpline and had a  conversation with Giovanni to settle me down.
    I will indeed send a personal message to the powers that be at BCNA but agree with other comments that the forum is the “ beating heart” of the organisation and if no one in authority at BCNA is following the forum that’s a bit sad.
  • Keeping_positive1Keeping_positive1 Member Posts: 434
    Really would like to know how many was in the "small Consumer Representative group" and whether they were given an option of whose job got "cut",  as BCNA mentioned it came down to funding!  So they chose to cut the Breast Care Specialist position and now we are left with just the helpline who will just tell us to ring another place..... sheesh!  

    How many helpline staff are required to tell members to ring another line???   .... hmmmmmmm,

    Once again the decision gets made without considering the members who BCNA are working for. I will definitely be sending the CEO a private message, and I really hope the cut wasn't the only way the CEO thought was in the best interest of the members!
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