State of the Nation - identifying our members needs and advocating for change

Kirsten_BCNA

Hi, my name is Kirsten Pilatti, but I am known as KP around the traps. It is hard
to believe, but I have been at BCNA for 11 years this February . I have loved every day
here and am so excited about my next challenge at BCNA. I am leading a major
new project for BCNA. We are calling it the State of the Nation.

BCNA was built on the voices and experiences of women. Our advocacy is a significant part of our proud history and we know that the State of the Nation will only build on this.

We are going to review the treatment and support of Australians diagnosed with
breast cancer. We are then going to identify the gaps in our healthcare system
and work to find solutions. We want to ensure all those diagnosed receive the
best care possible.

We
plan to release our findings in 2018. This is when BCNA turns 20. The report will help us to celebrate our achievements but importantly provide us with a clear advocacy path for our future.

We
will gather and analyse information on a state by state and national basis. So,
we need to hear from as many people as possible. I want to invite you to take
part. I want to make sure we are capturing your experience and getting a solid
sense of what's happening out there for you.

I will not be able to do this without you.

So how can you be involved?

1. We will be going to all members, with an email address, in early February to conduct a member survey - make sure all your details are up to date to ensure you receive the survey. Click here to update your record.

2. Complete the survey when it comes out - I will post in the community so you know when it is expected to hit your inbox.

3. Tell anyone you know who has been diagnosed with breast cancer - recently or in the past - to update all their details with BCNA to make sure their voice is heard.

4. I will regularly post questions or issues for discussion in the online network - look out for them and where you have an experience we can learn from then please let us know.

This is going to be a busy 18 months, but I cannot wait to be working with you and for you.

Regards, KP

iserbrown

HI KP - well what a great initiative! 
I am thrilled that we are having the opportunity to participate. We all have a tale or two to tell and some of us feel that the system has either let us down or we haven't had enough information to navigate our way through!  BC keeps giving in more ways than one and for some of us the out of pocket expenses keeping adding up. 

Thank you BCNA this is great!
Take care

Kirsten_BCNA

Hi @iserbrown, out of pocket expenses are definitely up there as significant issues. We have completed four consultations as part of the Information Forums and it came through in every small group discussions. I will be having plenty of questions in this area - but for now would love to know what are the expenses that hit you the hardest - during treatment and post?

adean

Apsolutely out of pocket expenses especialy when you have private health insurance

melclarity

Something that I found exhausting during treatment and post was financial assistance, working full time but a single parent. Centrelink wanted me to wait 11 weeks and spend my savings before they'd help if I couldnt work. Superannuation funds were a no go. 6 months post Chemo I stumbled upon my secondary super that had an income protection component. Ive served 1yr with 1 to go, but am working 3 out of 5 days. It was just a nightmare trying to sort through it all whilst so very ill. 

Unicornkisses

I will certainly be participating in the survey. For me the ludicrously of every surgeon going on leave over Christmas still rankles. Not that I think they don't deserve leave but even my husband's work cannot have no one on over the Christmas period, except for public holidays. And the difficulty of getting appointments for ultrasounds and biopsies in my area is a bugbear too. I am paying for it but I still can't get in fast enough. The other issue I have is lack of information from my GP. I was left on Christmas Eve with a diagnosis of breast cancer a referral letter for a surgeon (also faxed through) and nothing else, no contact numbers for information, no websites, no support contact, no information sheets, nothing.
thank goodness I found this site a few days later by googling. 
There really needs to be support information handed out at diagnosis.

Butterfly 40

What a great project! I will definitely participate this survey. I am newly diagnosed just one month ago. So far I had great experiences with the health system, I am very grateful that all the health professionals involved with my care have been amazingly supportive. From the minute my GP felt my lump, he picked up his phone made an appointment for an ultrasound which was done one hour later. After my ultrasound, the radiologist called and discussed with my GP , I had mammogram immediately. When I went back to my GP for the results 2 days later, my GP had already called breast clinic and faxed referrals. I was seen by a breast nurse and surgeon a few days later, then biopsy within 2 days and I had surgery one week after the biopsy. I was so grateful for everything rolled out so quickly, especially it was around the Christmas and new year. 

I am a public patient. I know it can be frustrating with the waiting time for any appointment and procedures. There are definitely areas need to be changed, improved or initiated to provide the best practice and care for all the people diagnosed with BC. 

Hope lots of people will participate this survey. 

Afraser

Good initiative - I look forward to seeing/contributing something on lymphoedema. It's a potential lifelong side effect of necessary treatment, with significant costs over decades and can be both time consuming and depressing for some women. 

socoda

Kirsten_BCNA what a wonderful initiative and so very proactive - Yayyyyyyyyyy!!!! Will definitely be participating because it is so very important not only for those of us already diagnosed but those coming after us. KP what a huge job ahead of you. You must be an incredibly organised strategic planner. Thank you and the team Xx Cath

Karenhappyquilter

Great idea, I will participate. 

kayvie

Great initiative! Look forward to participating.