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
- I too have had help from Giovanna. I commented earlier it takes courage to feel comfortable to natter online and ring the Helpline.
Giovanna was certainly appreciated by us, the forum users.
I was fortunate enough to meet her at the G fund-raiser in 2018.
I interacted well with Cossette and Marianne, previous BCNA staffers and met Marianne at a BCNA function at Ballarat.
Checking the spelling of Marianne's name I found this post
"Breast Care Nurses - Page 3 — BCNA Online Network" https://onlinenetwork.bcna.org.au/discussion/comment/131866#Comment_131866
This highlights the ongoing issue for us and the lack of continuity in who is looking after the online forum and Helpline undermines the confidence - Thankyou @AllyJay and @arpie
for detailing your personal need for asssistance
acknowledging
Giovanna's skill and depth of understanding and knowledge is the most imporrant reason for Bcna helplineThankyouBright - I had wondered about Giovanna "leaving". I also found her to me very approachable and willing to go that extra mile to help and support me. As some of you know, I have major other medical issues, and I truly felt like a medical football, who was passed from one doctor on to the other. Any time they ran into problems they would pass me on to another medical speciality. Giovanna wrote down all my major conditions...did some research about how they interfaced with my cancer treatment and then phoned me back with her advice. Pure gold to have someone who heard both the nuts and bolts of my problems, but also scratched the shell that I cover myself with, to find the scared and frustrated me. She wasn't flicking her wrist to check the time, or worse, standing up and walking to the door whilst making "busy goodbye" noises to get rid of me. We get enough of that in the hospital system, and so if phoning a help line we get the old "Phone this number, and someone there will be able to help you" just doesn't cut the mustard for me. There too, we are constantly given the bum's rush on phones with "If you want X service...press 1. If you want Y service...press 2. and so on ad nauseum ending with (at last the required number to push). "We are unable to take your call at this time...please leave your name, number and a short message and we will return your call"...never to hear from them. We need to have a person to talk to, and that person has to care.
- And if you haven't worked it out by now - Giovanna Raco (as well as our members) was the biggest casualty in this decision making - leaving (or more directly, she would have been asked to leave) BCNA last month as her role WAS the Specialised Cancer Nurse on the Forum. She added a depth of understanding and knowledge to BC that will be sorely missed. She had spent a large portion of her nursing career, with Cancer patients. You can look her up on Lindekin.
She joined BCNA in Feb 2018 as a specialist Cancer Nurse for the Member Support Team and quickly took over the role of chief Moderator on the Forum. That was about the time that I 'joined' BCNA and I had fairly regular 'chats' with Giovanna on many occasions regarding various issues on the Forum that I believed needed addressing. She was a 'constant' - and whilst I may not have agreed with ALL of the decisions that were handed down .... at least she was consistent and approachable.
She contacted me personally (off her own bat) a couple of times when I was in distress, particularly earlier this year when my husband was diagnosed with Stage 4/Terminal cancer, even doing some research for me, looking into treatment options for him. I will forever be grateful for her advice and support and kindness at that time in particular.
She brought the Group Leaders together to discuss various issues at different times as well .... I am sure that this group would relish having discussions with the CEO (or anyone else) on any future proposed changes to the forum.
If you DO ring the Cancer Council for 'help and advice' - there is every chance that you may end up speaking with Giovanna again!
She is sorely missed here already, that I know for a fact. - Thank you for the response @BCNA , @Kate_BCNA
Upon re-reading the email the following paragraph is relevant"...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..."
As I research the net I can find an explanation of Consumer Representatives, a term that is perhaps lost on most of us as we don't have an awareness of same
Consumer representatives | Breast Cancer Network Australia (bcna.org.au)
Suggestion: a post on the forum to make us aware of who or what Consumer Representatives are or do and or if any of us may be interested to become a Consumer Representative
I have to agree with the comment above
"...the lack of Funding for the Mets Counselling Service was never mentioned in the email as being the reason for it being ‘dropped’ ... so does this mean that ‘if’ funding became available again, the Mets Counselling Service will be reinstated?..."
In my view this has rattled those that are Mets and those that are concerned they could become Mets......it takes a long time to build up confidence to natter on a forum or ring a helpline. Perhaps being moved along to another agency may not be the best outcome for some. If that does happen I do hope that your Member support person does a follow up to ensure that the person who rang looking for BCNA help was able to get help elsewhere
- Thank you for responding .... Sorry - but the lack of Funding for the Mets Counselling Service was never mentioned in the email as being the reason for it being ‘dropped’ ... so does this mean that ‘if’ funding became available again, the Mets Counselling Service will be reinstated? If not, why not? Was the funding from a specific ‘outside source’? Are they aware of the importance of an in-house service to those with Mets? Or was it allocated from BCNA’s ‘pool of money’ from donations and fund raising?
With up to 30% of us going on to develop Mets - the numbers needing ‘Mets help’ will only be increasing... so the in-house Mets Counselling Service then becomes even more vital as a support tool for members.
I think that many members feel that, given their posts on BCNA, that the Mods/Counsellors can ‘research’ the members background even as they are speaking with them (or they may even have followed their journey so are already aware of their distress) and can provide support with the added knowledge that they have gained background on, from the blog.
For someone to ring the helpline, (after finally getting the courage to pick up the phone ...) hoping for support, only to be given another phone number to ring and then to have to explain their situation right from the start ... AGAIN ... would be very distressing and it could even tip some very fragile people ‘over the edge’ ....
It it seems to me that the heart of the ‘Helpline’ (as seen by members) has been ripped out with these changes.
I think, really, that I am just very disappointed (as are other members) that there wasn’t any community discussion or member input into these decisions - the decisions were made behind closed doors with faceless ‘consultants’ .... which probably would have cost as much as 12 months of the Mets Counselling Service!
A somewhat disappointing response
Sorry but no details have been given
Could a list of areas that the helpline is offerring to assist with be supplied to our members
There are many areas documented on pages of info that we can access that address the helpline
So there will need to be a lot or editing of documents
If Breast cancer assistance is the function of this organisation..then please clarify the function of the helpline
Has it been completly removed.?- Ladies - does everyone feel the above explanation and the changes are what BCNA members need ?????
- Thanks for responding. Maybe sharing some data on the helpline and call volumes and topics or some of the analysis around the decision or a summary of what ever report was done would help members understand this better. Appreciate that might be somewhat hard but context is something that really helps in these situations and I don't think the email communication covered it enough for some members.
- Many thanks for the response.
