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 contact@bcna.org.au
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
Comments
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OMG @arpie, thank you for posting that.
I wonder who the small group of consumer representatives were ?
I agree, there are many members who would have liked to provide input but now the decisions have been made - cynical me thinks they consulted with those they thought/knew would agree with them ?
Why get in touch to discuss the Helpline changes after the decision has been made and set in motion ?
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Interesting. I havent had cause to call bcna but i love all their stuff. I thought at last conference it seemed many people seemed to infer not enough cancer care nurses...seems a bit at odds. More not less needed regardless of which org has them
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"Find A McGrath Breast Care Nurse - McGrath Foundation" https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/
I do wonder why this decision has been made without consultation with those that support BCNA, us!
More often than not we hear there's not enough McGrath nurses, especially when they are trying to encourage donations.
I was fortunate enough that my Breast Surgeon has breast care nurses but if I didn't and I use the link above putting in my postcode there's none nearby, 6 across Melbourne but none near here!
Ringing a Helpline is because you want help, not to be fobbed off to another agency
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"Building a Nationwide Support Group to Fight Breast Cancer" https://blog.vanillaforums.com/building-a-nationwide-support-group-to-fight-breast-cancer
According to the above link the forum is paramount in supporting each other and the platform for us to communicate with each other
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Yes I got the email and was a little perplexed as there was no real consultation with members and I know the one time I called the help line and spoke to one of the qualified breast cancer nurses ( about my decision to go double mastectomy after initially having a single mastectomy and stage one reconstruction with tissue expander) it was amazingly helpful.
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I feel very much let down by this development on the part of BCNA, that is, the removal of a breast care nurse from the support help line.When I was diagnosed four years ago and was struggling to understand treatment options there was no breast care nurse, McGrath or otherwise, for me.There was one WA Cancer Council nurse to handle the whole of the Kimberley and Pilbara regions. She was based in Kununurra. It took two weeks for my call for help to be returned.By that time I had flown to Perth twice!Using the McGrath Foundation "Find a McGrath Nurse" link, there are four McGrath nurses in the Northern Territory (1800 kms) and one in Perth (2300kms).BCNA is "my" organisation. It is comforting to know that there is / was a breast care nurse available on my support helpline.I deplore this move. It was never the intention of BCNA's founder Lyn Swinburne. Her philosophy was that no one should ever go through a diagnosis of breast cancer alone. A breast care nurse available on the support helpline provides that sense of not being alone.9
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I was lucky to have access to Breast Care nurses through the public hospital I had my surgeries. If I enter my post code there is no McGrath Breast Care Nurse anywhere near me if I needed help. Being in Rural / Regional Victoria it is nice to know that BCNA is there for me when I need help and support. If I was to ring BCNA first and to be fobbed off to call someone else I don't think that sends the correct message. When you ring and reach out you need help. People may feel abandoned and not make the next phone call and fall through the cracks.
@Kirsten Pilatti I have attended some of the BCNA webinars and have found them very helpful. One of the things discussed was there are not enough Breast Care nurses to cover our vast land. Were any of the ladies here that have been members for some time and been so supportive to new members consulted with the new plan ahead. To loose the Metastic Breast Cancer Counselling service seems very sad.
Have any of the Member Support helpline staff had Breast Cancer so they know where we are coming from?
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Yes, @Locksley, @Annie C, @iserbrown, @June1952, @MicheleR, @Julez1958 - I hear you! i hope the Mods/CEO do.
It is SO important for those on the Helpline/Member Support Team to have a full understanding of that our members actually go thru - and the Cancer Nurse would know that from first hand experience with BC survivors (and families of those who's loved ones have passed away) every day.
Like you, living regionally, we just don't have ready access to Breast Care Nurses, who are usually in the closest 'big town' and don't always get back to you within a timely period. I experienced this myself as there are no BC Nurses in my town. Even tho I haven't 'used' the Helpline yet - it is a great comfort knowing that it is there, with a qualified BC Nurse on board, permanently, I hope.
Hmmmm .... WHY even CHANGE THE NAME from Helpline to 'Members Support Team'? HELPLINE is instantly recognisable - short & sharp - I also have been advocating for a couple of years now, that the Helpline Phone Number should be permanently included on the Blue Banner at the top of EVERY PAGE - to make it even EASIER for members to find (without having to go back to the 'Community info/BCNA Website'! I even did a Mock Up of how it would look - and I think it looks TERRIFIC! What do you think?
VERY INTERESTING - there was similar outrage at the attempted change of the Name of The Beacon to "The Pink Lady" back in 2018 - with very similar comments about members (ie those directly affected by BC) not being included in the decision making of the name change and HATING the new name for an assortment of reasons! So many of the comments on THAT thread are SO relevant to these current changes being made now to the Helpline & Counselling services - also without consultation with members! .... A survey (finally) put to members (page 16) resulted in The Beacon RETAINING it's name to this day! YAY for People Power! ... You can check it all out here:
https://onlinenetwork.bcna.org.au/discussion/17867/disappointed-in-the-beacons-name-change/p1
The facts are - that up to 30% of us BCNA members have a chance of developing Mets at some stage in the future (the GOOD NEWS is that 70% WON'T tho) - and I know that I would be seeking my comfort and counselling from HERE rather than elsewhere.
What do you reckon?2 -
I really can’t add much as I have never used the helpline or had a BC Nurse (I’m in Melbourne) but if BCNA has stats to share, that might clarify where greatest demand is and what may be the options to meet demand? It’s great to offer as wide a range of services as possible but realistically choices may have to be made about offering good services instead of stretching everything too thinly. Understanding how the choices are made keeps everyone informed.0
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I was really disappointed with the email too. I have spoken to the bins breast care nurse when I haven’t been able to speak to anyone else and it was hugely helpful.2
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Ladies, please help to keep this at the top of the page so everyone can see it and make their thoughts known.
So many members have called and spoken with the BCNA cancer nurse when in dire straits and who knows how they would have coped if they were then told to call someone else. The BCNA has made a name for themselves and the helpline has been a big part of that recognition.
Basic cancer nurses don't seem to have the knowledge re how a BC diagnosis affects us all. Not every cancer is the same.
Can BCNA please advise who was consulted with re this backward change ?7 -
Iam very disappointed in the Lack of communication to our membership related to
Helpline changesThe reason I joined was due to metastatic diagnosis
...one of our long time metastatic members did try and ring the helpline during the last few days...and was disappointed!
I would like to have a clear list of these changesCan we still contact bcna to speak to a psychologist?
Or is it only queries related to treatments that need to be handed over to another phone callAlways in hopeBright4 -
So Sorry to hear that @brightspace .. and that is the main reason I’ve posted this thread .... it is stressful enough being diagnosed with Mets ... and to then find that the BCNA Mets Counselling Service has been axed ... is a double hit and would be incredibly distressing
It is a Specialist area - and needs Specialist advice!
@BCNA PLEASE REINSTATE THE METS COUNSELLING SERVICE AND THE CANCER NURSE ON THE HELPLINE
I hope you are going ok with your treatment xx Stage 4 really, really sucks (my husband was diagnosed in Jan.)5 -
I've used the helpline before, and have to say that knowing that there is a sympathetic as well as knowledgeable ear on the other end was a great relief. I find the general assumption that breast cancer people are all very tech savvy to be most discriminatory. Okay...I know that I'm a Luddite of the highest order, but I have no mobile phone and so all this app this and link on that, tap on this and click on the other to be of as much use as tits on a bull. Unless I can speak to an actual person, I find all this modern technology stressful in and of itself.4
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Thank you for
taking the time to provide feedback re our recent helpline
communications. We share your sentiments to ensure all Australians
affected by Breast Cancer can access the care they need.Our helpline
will still provide information and support to all people and their families and carers
affected by metastatic breast cancer. The metastatic counselling service that
concluded was a specific program where the funding came to an end.We want to reiterate that our
Helpline service is definitely still operating and very much focused on
providing the help at the time people need it. The team are well trained
and dealing with the very diverse calls for help we receive. Anytime you feel like you need support, resources, or navigation through
the health system, please call our BCNA Helpline and one of our Member Support
Team will be able to help you on 1800 500 258 (Mon-Fri 9am-5pm AEST).Via data
analysis and consultation, we have recognised a nursing service is not what
those diagnosed are coming to BCNA for. We wanted to ensure that the Pink
sector sees Breast Care Nurses and Health professionals who are currently
employed working at Cancer Council’s 13 11 20 information and support
service and the role of the Breast Care Nurse at McGrath foundation is not
duplicated at BCNA. This is not our key function to be providing breast care
nursing or cancer nursing service provision.Thanks again
for your feedback.Kate.
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