BCNA's Helpline refocus - some changes being made to the Helpline
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.3
@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.
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.1
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.
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 ?
@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 ....
@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.2
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.2
@FLClover..Exactly. When you start seeing words like "Streamlining Services"..."Positive Outcomes". "Mutual End Goals", "Consumer whatever" and similar mealy words...God I hate being called a consumer when it comes to cancer. I go to Woolies as a consumer, or Kmart, or Target...where, as a consumer, I purchase goods or services. I didn't enter hospital to get filled with deadly toxins and being chopped and mutilated as a "consumer", Circumstances demanded that I climb on the treadmill and try with everything I had, not to fall off the end in a heap. The printing of Policy & Procedure Manuals is not worth killing trees for.5
So sad to hear that BCNA is going down the route of just being another information service. I understand the books have to balance, and I have read the BCNA's latest financial Statement................ but, really, does the chop have to be made by taking away the members active support and will now be told to ring another cancer organization to get counselling and a listening ear.
In my opinion speaking to breast cancer specialist and getting some support through BCNA should be higher on the list and have a special place of importance to be considered important enough to not be given the chop.
The counselling service was not doubling up on the services already provided in the community! If that is the case, it could be said that all the funding and donations that BCNA receives is just doubling up on already existing cancer charitable organizations that are in existence already. Why set up a charitable organization, then take away the support for its members?
Perhaps someone elses fixed term contract could not have been renewed, instead of taking away our beloved Breast care counselling service for its members. Now that our service is taken away, I may have to take my donation money to the service you are redirecting the members to!6
Very well said @Keeping_positive1. I guess the 'consumer' (as @AllyJay refers) will continue to the charity they feel more aligned to.1
@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 🤷🏼♀️1
@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...🤷🏼♀️
@Keeping_positive1 hear hear! 👌🏻0
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