CAN at 40. DO at 45 - Awareness Campaign

JJ70JJ70 FremantleMember Posts: 953
edited September 2018 in Community news and events
Hi All,
@kmakm @LittleCroft @JJ70 ; are working on a campaign for breast health awareness, linked with our national mammography screening program.

Our mission statements are:

1) To increase awareness of FREE mammograms for women 40-49 provided by BreastScreen Australia.
2) To lower the Australian active recruitment age for screening mammography to 45.

Mission Statement #2 is backed by BreastScreen's own recommendations to government in 2009 and a plethora of research that takes into account false positives and negative rates, breast density and mortality benefit. Other countries (including NZ) have lowered their recruitment age. Reasons for NOT lowering the recruitment age revolve around politics and funding.

If you would like to support this campaign, you can do so in a few ways:

a) If you are on Facebook, you can copy and paste this address below  into your browser and LIKE and FOLLOW the page, sharing posts and spreading the word. (or type @Can40Do45 into your FB search bar)

https://www.facebook.com/Can40Do45/

b) You can offer your personal story to submit to government. Your story would need to support either one or both of the mission statements. That is NOT to say you have to be 40-49, but that your diagnosis may have been different if you had of known about free screening mammograms, or been invited earlier to attend.
Perhaps even younger women here could share their story, with links to the importance of the national program being advertised with raised awareness for Australian women.
If you would like to share your story, we have a guideline PDF and a template for your to use. You can message me or provide an email link.

c) Offer assistance. If you are passionate about this, you may wish to take a more active role and become a state advocate. I am looking for a couple of representatives from each state to steer and guide, do local research and spread the word.

d) T-shirts coming soon!! 

Thanks,
Jo
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Comments

  • Annie CAnnie C Member Posts: 556
    @JJ70 @kmakm @LittleCroft
    I would like to be kept in the loop. Remote area women  face challenges accessing the Breastscreen mobile vans. Women under the age of 50 and women over the age of 70 are discouraged from screening at the mobile vans. I firmly believe that this is politics and cost.

    The mobile Breastscreen van is due in Derby in June 2019. If a Kimberley  woman misses that visit then it is 2021 until the next screening.  The length of time the van remains in each Kimberley town is static. Advertised dates are not strictly adhered to.  Appointments are often changed at very short notice. Some of our Kimberley  women live some hours driving from town making a screening a major undertaking.

    In my case I missed the June 2015 visit. My appointment was for a date in the last week of June 2015. Early in June I needed to attend my brother in law's funeral. I booked my return flight for 2 days before my appointment. Three days before my flight I received a text message asking me to come into the van the next day for screening as the van now needed to move on. I never did find out why. Not adhering to the advertised schedule resulted in my lump being detected 2 years later by Breastscreen WA.

    Many Kimberley women told me after my diagnosis that they are too young, too old or are not given enough time to make the trip into town. A 300 km each way drive is a major undertaking from our remote area cattle stations. 

    When the van comes to town next year I want to make sure that it stays for the advertised length of time and that women under the age of 50 and over the age of 70 are actively welcomed.  In other words I want to raise hell and make a noise. 



  • JJ70JJ70 FremantleMember Posts: 953
    @Annie C. Thank you so much for this detailed info. The dates are fabulous, because I can take this information to the next Consumer Reference Group Meeting in Novemeber Annie and air your concerns. The BreastScreen team will be interested I am sure.
    This business of discouraging eligible women just has to stop. This is the third reference about the BS van discouraging women in rural areas under 50. Another lady from Collie WA mentioned it on Can at 40. Do at 45. and another lady in rural QLD or NSW (I forget which).

    Please raise hell, make the noise and do an dance along with it Annie. Active welcoming of all eligible women is what we are after!  <3  
  • JJ70JJ70 FremantleMember Posts: 953
    I have sent this info on to BSWA management @Annie C!!


  • Annie CAnnie C Member Posts: 556
    @JJ70
    There will be a Derby Dance. I am enlisting my friend who is an aboriginal community health worker and who is very concerned that our aboriginal women are missing out. Iris is also a shire councillor (has been for 20 years). She is excellent liaison between community health and the aboriginal community. Iris is aboriginal lives down the road from me. Between us we will be a voice to reckon with. I have heard comments from the aboriginal women coming in from remote communities and being turned away because they do not fit the age groups or that they were late for their appointments. These are remote women having to travel over 200kms and they were turned away! 

    Don't worry there will be noise made. I never want to see another woman in my position. 

    Count on me and please use my experience at your next consumer reference group.
  • Annie CAnnie C Member Posts: 556
    @JJ70
    Many thanks. I am pleased that you have forwarded the info on. When I raised this matter with BSWA after my diagnosis last year my concerns were brushed aside.

    Given that my asthma is severe at the moment I won't hold  my breath waiting for a reaction from BSWA!

    Take care and warm Kimberley wishes to you 

    Annie

  • JJ70JJ70 FremantleMember Posts: 953
    Ha @Annie C....I've missed a phone call from BSWA...I think it might have tweaked their interest.
  • Annie CAnnie C Member Posts: 556
    @JJ70
    Ooh. My radar is on high alert. Go for it. I will never know if my lump was there in my right breast in June 2015. It definitely was not there in June 2013. It may well not have been however it would have been reassuring  to know. If I had missed the appointment through my own laxity then I would wear the consequences but to have the screening cancelled 5 days before my appointed date showed a lack of concern for remote women. I had made my return travel arrangements to be back in town 2 days prior to screening appointment. I believe that BSWA showed a lack of understanding of the daily lives  of remote area women. It is not as if we can trot around  the corner to the next mammogram unit.

    Raise hell girl and go for it. Last year I was too traumatised and in too much shock to realise  the consequences. This year I am in a fighting mood.  The Melbourne Conference has helped me realise  that unfortunately post code does play an immense role in screening and treatment. Just listening to the experiences of the other women was a jaw dropping eye opener.
  • kmakmkmakm MelbourneMember Posts: 7,344
    The provision of breast cancer services and support to the aboriginal community is one of the BCNA's areas of focus, coming out of the State of the Nation report. @Kirsten_BCNA @Danielle_BCNA @Marianne_BCNA you might like to read the above account of mammograms in the Kimberley and @Annie C & Iris's efforts. K
  • JJ70JJ70 FremantleMember Posts: 953
    @Annie C has been put in direct touch with Angela at BreastScreen WA @kmakm. Together they will be able to review the fabulous things that BSWA do for the women of the Kimberley and also hopefully iron out some of Anne's concerns as she shares her experiences.
  • kmakmkmakm MelbourneMember Posts: 7,344
    @JJ70 Excellent
  • JJ70JJ70 FremantleMember Posts: 953

    We now have an Instagram account!  Woop woop!
  • kmakmkmakm MelbourneMember Posts: 7,344
    Followed!
  • Eli86Eli86 Perth, WAMember Posts: 70
    Hey @kmakm and @JJ70, I haven’t been online for a while due to a super busy time at home and post surgery complications (a very nasty dose of antibiotic resistant staff MRSA in my expanders resulting in them being removed and a lengthy stay in hospital). 
    I really just wanted to tell you that I think you are amazing setting up this campaign and I love, love, love your 80s throwback FB posts. 
    Unfortunately I can’t contribute
    an early screening story, as I felt my lump, but I can give personal feedback on Breast Screen WA actively discouraging Under 50s from their service.
  • JJ70JJ70 FremantleMember Posts: 953
    edited October 2018
    Hi @Eli86 . Great to hear from you! Sorry you've had such a shite time with your complications. :'(

    It doesn't matter how you found your BC. You can write how it was found and still support the cause with your story. By including statements of support for increased awareness of eligibility from 40 and your support for active recruitment from 45, your story can still be useful. Also if you mention how your BC diagnosis may have been swifter had you not been actively discouraged?

    I am very interested in you being actively discouraged. Can you elaborate?
     
  • Eli86Eli86 Perth, WAMember Posts: 70
    When I found my lump, I went to make appointment with BSWA, using a google search to take me straight to the online booking page. This is significant, as while elsewhere on their site it says 40-49year olds are eligible for a mammo, if you access the site the way I did by clicking on the “Book Now” it clearly states you must be aged over 50 to book a mammogram. There is absolutely no mention that the service is available for 40-49year olds via phone booking.
    So believing I was ineligible I went private, waited 4 weeks and paid $850. 
    For me the main thing about not being able to access BSWA was that I had no access to their support services or information. It was 6 weeks between my core biopsies and BMX surgery and due to my highly unusual biopsies results I had no idea if my cancer was metastatic and if I was going to die. I I’m 47 and my youngest child is 7 and no knowing for 6 weeks if my children were going to lose me was the hardest thing I’ve ever faced. I felt isolated, alone and scared. BreastScreen WA totally failed me. 
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