BCNA's Helpline refocus - some changes being made to the Helpline
Comments
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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.
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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.1
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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.4 -
Dear@Kirsten,
JUst a few quick words, I will let those more eloquent than I speak for themselves.
I am a Metastatic Breast Woman, and have been a member for 7 years, on the occasions that I have rung and spoken to bcna telephone support people, of which Rosie Brown, now longer there and Giovanna now no longer there, I was able to speak freely at all times mentioning chemotherapy drugs, symptoms and side effects and knew that those two ladies in particular knew exactly what I was talking about both Rosie and Giovanna were aware of and made available to me clinical trials that were open and those that would be opening, I am pretty certain that if I rang now there would not be anyone there who could help me in that regard, when I did ring about two weeks ago I was advised to ring the cancer council, my need at that time was not for specific information, it was purely to speak to a caring and compassionate person regarding what was happening with me regarding the anxiety in my life, when I realized that the person I was speaking to was not a cancer nurse I clammed up and did not feel secure in, that, persons knowledge of metastatic breast cancer was at a level I was comfortable with.All of the comments thus far are valid and worthy of discussion, however you will have to read all of the above posts to get the gist of what is being said.
Its a sad and sorry situation that bcna now finds itself in, do I now ring the McGrath Foundation who have 2 very competent telephone Breast Care Nurses available 5 days a week, or the Cancer Council, if thats the case, why would I want or need to ring bcna for information, I have long been an advocate of BCNA and they have been very good to me in the past, I was invited to come to Melbourne to do a video about Metastatic Breast Cancer, this was via Danielle Spence, now no longer with bcna, I was invited to a bcna reception at government house some years ago as well, I also wrote and gave to Danielle Spence a letter for Greg Hunt when she had a meeting with him in Canberra, again some years ago, this was regarding bcnas participation in trying to get palbociclib made available to Australian women, I must also add that Giovanna also represented the metastatic breast care women with passion and dignity,I must also add Rosie Browns name , in that she was the go to person for my time in melbourne
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All I can add is where to from here for bcna?
wendy558 -
@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!
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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/
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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!1
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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.2
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Wouldn't you think a medical person would be of benefit to have amongst the fold at BCNA? Perhaps employ a nurse part-time?0
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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.4 -
@Kirsten_BCNA,
Seems to me this is not going to be resolved by private emails between you and individual members. That's just shutting us down as a collective.
I would suggest a zoom session or something similar where information is shared and questions can be asked.
We are the people supporting the organisation and we are meant to be the beneficiaries too. Why should we support bcna if we aren't getting what we need from bcna?
Open transparency is what will help and so far with all the questions in the threads above, I do not see any of them answered at all.
I would like to know information such as: what are the top 20 questions in those 9000 calls. I would also like to know what analysis was done to determine what areas if service bcna would be cut? Can the report or a executive summary of the report that killed the services and removed staff that serviced members be shared with us? If not, why not? What are the types of calls in the last month compared to call types 1 yr ago?
Hopefully some sort of session can be provided to us rather than sweeping it behind a closed door or private email. Afterall if you read the threads above this lack of transparency has lead to possible misunderstanding and anger at the decision-making.5 -
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?3 -
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'.2
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Some comments on here are they are not technology savvy hence Zoom won't cut it for all.
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Members on the BCNA website it states under advocacy
'Improved access to specialised breast cancer nurses or cancer care coordinators for people with metastatic disease
BCNA welcomed the Federal Government’s announcement in January of $27 million for the McGrath Foundation to train 41 additional breast care nurses over the next four years, including 30 nurses dedicated to supporting Australians with metastatic breast cancer. BCNA and the McGrath Foundation had been lobbying for new government funding to provide more metastatic breast care nurses across the country.
In 2019, BCNA will continue to lobby for increased access to specialised breast care nurses or cancer care coordinators.'
Seems this decision to remove the breadth care nurses goes directly against this statement. @Kirsten_BCNA can you advise how the decision to remove these nurses is in accordance with BCNA advocacy please?
Also I note in the 2019 annual report there were 13000 calls to the helpline and 1/3 of those calls were for a breast care nurse so I would like your comments on that and the recent decisions that were made. I don't understand how it can now be said that the nurses for calls are not needed if 1/3 of the calls went to the nurses.
Please don't let bnca become about jobs for those internally rather than services for members. Sometimes charities loose their way when members stop being front and centre.
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