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
- @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.
- 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.
- 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. - @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.
- 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. - @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.
- @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.
- @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.
- 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. - 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.
