BCNA's Helpline refocus - some changes being made to the Helpline

Afraser

Many thanks for the response. 

Cath62

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. 

June1952

Ladies - does everyone feel the above explanation and the changes are what BCNA members need ?????

brightspace

 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.?

arpie

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!

iserbrown

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

arpie

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.

AllyJay

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.

brightspace

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 helpline

Thankyou

Bright

iserbrown

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 

brightspace

Now totally disappointed to read another Metastatic poster in need if support  has been unable to speak to a bcna helpline support person

Other contacts were unable to provide help

🤪🤪🤪🤪🤪🤪🤪

arpie

I am SO sorry to hear that @brightspace - it really is NOT good enough    

That would have been soul destroying for that person.  xx

June1952

Well, well, well - I am a bit slow.  I had no idea that @Giovanna_BCNA was a casualty of this change and I am absolutely disgusted.  BCNA has had some changes and none of them appear to be for the good.

Afraser

I appreciate everyone's concerns and I have no idea what the terms of employment are for staff (nor is it any of my business) but most organisations must work within agreed budgets, unless they want to get into serious trouble! The Consumer Representatives have an input to decision making, about staff, programs and priorities, but at the end of the day, neither they nor members of the network are responsible for making those decisions - that's the CEO and the Board. In many areas, including health, programs and staff are funded by special project grants or by funding which is not ongoing. Best to approach the Board or the CEO if specific information is wanted but the request may need to be very specific.

FLClover

Like arpie, I also thought as soon as I received that email that that’s the reason Giovanna is leaving. Not happy either. When I was at my lowest, it took about a week for me to actually gather courage to call the helpline and speak to Giovanna. Because of her I joined the forum. And still took me a further 5-6 months to have courage to actually post. I doubt I would’ve called another number if Giovanna hadn’t been available to speak to me directly about my problem. When we’re in that state of mind, getting off the couch is difficult, let alone calling different numbers and speaking to different people or recorded voices to finally reach one person who can help. 

I don’t know what else to say.