Forum Discussion
BCNA's Helpline refocus - some changes being made to the Helpline
BCNA's Helpline refocus
I received this email last night and assume that all members received it - but just in case some haven't received it, I'll put it here for everyone to read and comment on, if you like .....
I am a little perplexed that a couple of valuable assets to our members will be removed from the Helpline & Counselling Services - specifically the Cancer Nurse on the Help line & the Metastatic Breast Cancer Counselling Services. I really think the members should have been canvassed (by way of a poll) to determine their feelings on the matter - as they are the ones who will be affected by it.
I believe that both of these services are a vital part of the BCNA support for it's members - and that members would feel much more comfortable in ringing 'our' helpline than being referred to the Cancer Council or McGrath Foundation - particularly those with a recent Mets diagnosis.
What do you think?
Dear Arpie
In order to be best positioned to deliver on the vision outlined in our Strategic Plan, BCNA went through an organisational redesign in March 2021. As part of this process, we have been consulting with our BCNA Helpline team in recent months about a new team structure which repositions the Helpline at the centre of our member support services.
During the consultation period, we spoke to a small group of consumer representatives to get their insight and feedback on the proposed changes and how they impact people with breast cancer who contact us for information and support through the Helpline. We shared with them that a recent review identified an important new role for our Helpline team in delivering a broader set of information and navigational services, built on the knowledge gained from speaking to our network on the phone.
The review also identified that by having a cancer nurse on the Helpline, we were duplicating services provided by other organisations, including McGrath Foundation and Cancer Council. As a result, we will no longer have cancer nurses available on the BCNA Helpline but will instead refer and support callers in connecting to a breast care nurse or obtaining advice and information from health professionals available via Cancer Council's 13 11 20 information and support service.
Our existing Helpline team will broaden their focus by becoming Member Support Officers. They will focus on ensuring the BCNA Helpline remains the number one place to contact if you have questions and issues about breast cancer, while also individually specialising in one of our key member functions - supporting access to My Journey, My Care Kit program, health professional onboarding and BCNA Online Network.
We have worked closely with McGrath Foundation, Cancer Council, and other partners in recent weeks to ensure that we can seamlessly refer BCNA callers to a health professional when required. As you may know, working collaboratively with our partners in the sector has become an important part of how we work, with the wellbeing of people with breast cancer our number one, shared concern.
As part of these changes, BCNA will also no longer offer Metastatic Breast Cancer Counselling Services and will now refer people to the appropriate counselling service option depending on their needs and requirements. Our engagement with BCNA’s Metastatic Breast Cancer Advisory Group will provide a regular mechanism to discuss and review any impacts identified and help ensure appropriate solutions are considered.
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. The consumer representatives we have spoken to so far have been open in their feedback which has been positive, agreeing that the changes are both logical and will reduce some confusing duplication for people with breast cancer.
However, we are determined to work closely with our network and members to make sure the refocus works for you, and we will continuously evaluate the impact of the new arrangements. Please contact us with any queries or suggestions on
1800 500 258 or email [email protected]
I am confident that the new arrangements will help to strengthen and expand the central role BCNA plays in providing compassionate and practical support, information, and resources for everyone affected by breast cancer.
We have always been proud of our ability to help people navigate their way to everything from peer support to advice to knowledge, and our suite of support resources is now in great shape to fulfil many of those needs. My Journey, for instance, is now well-utilised as an app, with tailored and curated information to your particular breast cancer type. The Symptom Tracker is a highly valued tool and is a new feature and an example that helps members track short and long term side effects and inform consultation with your treatment teams.
Webcasts, podcasts, and direct email to BCNA have all become popular and important channels for members to communicate with us and each other, and health professionals are also fully engaged through our health professional onboarding program.
Our Helpline team - now the Member Support team - will be fully involved in every aspect of supporting and developing these resources, to ensure they are consistently responsive to people’s needs and help people with breast cancer to explore, understand and share their journey.
Please do not hesitate to get in touch with me or your preferred BCNA contact to discuss the Helpline changes.
Yours sincerely,
Kirsten Pilatti
CEO
135 Replies
- @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/ - 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
.
All I can add is where to from here for bcna?
wendy55 - 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 [email protected]
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. - 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.
- 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.
- 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! - 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. - 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!
- 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. - 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
