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

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  • LocksleyLocksley Macedon Ranges, VictoriaMember Posts: 663
    When I was in hospital last year with large  serious blood clots in my heart and lungs I rang bcna and spoke with Giovanna.  She was wonderful on the other end.  She followed up and rang me 10 days later to  see how I was.  I was so grateful for her kindness at this very stressful time.
  • arpiearpie Mid North Coast, NSWMember Posts: 5,361
    @Afraser, please read the email again - the CEO @Kirsten_BCNA has actually invited the members to have their say on the changes 'in their preferred BCNA contact' - and that is what this thread is for - a way to reach ALL members.  It would appear that not all members were aware that the changes were happening so hadn't received the email .... perhaps the email went to their junk mail?

    I am sure you may have some views you would like to put forward on these changes, which will come into effect in mid-July.  Please do not hesitate to get in touch with me or your preferred BCNA contact to discuss the Helpline changes

    We've already had notice of 2 members with Mets that have been unable to receive the support that they needed, when they really needed it - and we all know that when you DO get the courage up to ring, how devastating it would be if you get fobbed off to a different number or recorded voices, which would upset you even more  (as @FLClover so eloquently said.)  And these are the only 2 that we KNOW about who have been fobbed off!  I bet there have been more.

    The main reason for BCNA & the blog is to support our members when they are at their worst - and those with Mets should be top of the list for getting all the support they need, as it is an area of BC that doesn't always get money thrown at it .... and the removal of these services WILL impact their quality of life.

     

  • AfraserAfraser MelbourneMember Posts: 3,625
    Agreed, just saying that for any effect requests will need to be specific - what should be retained, what might not. I’d certainly put Mets support at the top of the list, just might be helpful to specify what type of support is the top priority. 
  • arpiearpie Mid North Coast, NSWMember Posts: 5,361
    As requested by the CEO in her email to members - I have written of my concerns to her and asked her to reconsider the axing of these 2 vital services. 

    I hope you do too.


  • June1952June1952 Member Posts: 1,248
    An experienced Cancer Nurse working on the Help line and the Metastatic Breast Cancer Counselling Services should be retained however is this likely given it is already mid-July and the whole change thing is done ?
    So disappointing.
  • arpiearpie Mid North Coast, NSWMember Posts: 5,361
    It was actually axed earlier than the advertised date @June1952 ... it was not available 2 weeks ago :( 
  • June1952June1952 Member Posts: 1,248
    edited July 19
    @rpie - that disgusts me !
    I guess not many ladies understand the implications (until they need the services) nor are they prepared to write to the CEO letting her know their thoughts.
    BCNA will not be able to continue if they keep going in the wrong direction.  A great name ruined by few with their own agendas.
    We still don't know who they consulted re these changes, do we ?
    Lyn Swinburne set up an amazing institution but ....

  • FLCloverFLClover Sydney Member Posts: 1,224
    @June1952 it’s always the case unfortunately. It starts out small and wonderful, then grows and becomes all about the money, forgetting the primary purpose of its creation. I’ve seen it before. So sad. It’s becoming more about raising money to go towards research and whatever rather than focusing on members who are already affected and need immediate help. I’m not saying not to donate to research. We certainly need that to continue. But there are lots of charities donating. This one was good because it directly helped the women and men diagnosed, as that’s really important too. Let’s hope that aspect doesn’t change. 
  • Julez1958Julez1958 SydneyMember Posts: 158
    Well said FLClover!
    when I asked my GP when I was first diagnosed where I should go on the internet to find out more she suggested Breast Cancer Network as it had not only lots of useful factually based information but that it was also a member based organisation
    focussed on supporting members and although the Cancer Council was also excellent and I should avail myself of its resources too this organisation specialised in women like me - with this particular type of cancer.
  • Cath62Cath62 Brisbane Member Posts: 421
    Very well said @Keeping_positive1. I guess the 'consumer' (as @AllyJay refers) will continue to the charity they feel more aligned to. 
  • FLCloverFLClover Sydney Member Posts: 1,224
    @Julez1958 I found this on the pamphlet sent with my free Berlei bra post surgery. I wish I’d found it sooner. I also went on the Cancer Council website but found it too confusing. I couldn’t navigate it. And I found something that resembled a forum but it was about other ca types, so the info was irrelevant. I just came back on here after that. Much easier and more relatable. But if that changes and necessary ppl like Giovanna are forced out, I’m not so sure anymore 🤷🏼‍♀️
  • FLCloverFLClover Sydney Member Posts: 1,224
    @AllyJay yep, those words! Those words. My goodness, I didn’t even see ‘consumer’. Please tell me that word wasn’t used for us. I can’t think of a more inappropriate word. There were too many formal words in that email, it was draining to read, and that’s what put me off to begin with. I don’t want formal in this situation, I want real. Bca is brutal and real, so I want something that makes me feel supported, not like a member of some poshy country club. Anyway...🤷🏼‍♀️
  • FLCloverFLClover Sydney Member Posts: 1,224
    @Keeping_positive1 hear hear! 👌🏻
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