Forum Discussion
McGrath Nurses
i am so angry and sad regarding women that have had surgery and have no one after wards to help them, after my surgery I had a pamphlet that had a McGrath nurse I could contact which i have and they have been a gods send to me. I have been told it is different for private and public if your public you are on your own which I have just found out to be quiet true. I have joined a bc group like this and is in my home town adelaide . I have tears as I write this I posted a reply to a women and I hand about four replies from other women that were the same no McGrath nurse or any bc nurse to contact when they came home wtf all this money we raise and suppose to have a nurse for every women that has /had breast cancer I'm shocked at how many of these women have no help or know how to get help. Can anyone tell me why this is happening .
41 Replies
- I didn't have a breast care nurse but to be honest I didn't need one. I had a fantastic senior oncology nurse and my surgeon's nurse was blunt but extremely helpful. But it would be good to have that option offered as far as possible. It may be that there is a bit of "selection for scarce resources" involved. Which could be OK if people making those decisions have enough information to do so. Which, in the hurly burly of an unexpected diagnosis and all its implications, seems unlikely.
- I haven’t had a breast care nurse and it would have been useful prior to surgery as post hubby had to go try find a suitable crop top for me to wear home I knew nothing. It was only that a nurse on the ward that clued us in. Possibly the failure in this regard falls to the fact I was only having a lumpectomy but I still needed support.
When I asked my surgeon she hinted that there were some political games being played about nurses not working with some surgeons patients - pretty poor if you ask me
it all changed dramatically once I went to oncology. My medical oncologist has an oncology nurse in his practice and the treating hospital has a breast oncology nurse attached to the oncology ward. I believe although I haven’t accessed them that there are also a couple of breast care nurses attached to the hospital as well. Radiation oncologist also had nurses available for me.
Ultimately this hasnt been that that big an issue as I am also fortunate to have a close friend that is a breast care nurse who I could ask questions of and she did offer to do more if I needed it but really you don’t want to put your friends in that position!
in my experience once diagnosed someone should be allocated to you and it should be their job to follow the patient up. I was so completely overwhelmed with the diagnosis, trying to sort my life out, trying to sort work out and generally deal that I didn’t have time to chase up a breast care nurse. - Hello @Patti J sending you a private message
- I find it frustrating that there now seems to be a wide perception that we have access to BC nurses (eg the survey recently appearing in the forum). I know some have and that is wonderful but it is far from the case for many of us.
- @Giovanna_BCNA. It is very frustrating to be told that there will be more McGrath breast care nurses. In 2018, the number of these nurses increased from 119 to 120 nurses.
- Hi everyone,
I have just read this post and wanted to respond to all of you. I can see that there have been varied experiences with accessing a breast care nurse and this has been discussed previously in the online network. See response from @Marianne_BCNA below from a similar discussion regrading breast care nurses.Marianne_BCNA Administrator Posts: 225 ✭Hi all,
Thanks for alerting me to this conversation @iserbrown. The very varied experiences and disparity in care you all describe with breast care nurses reflects what we learnt from our State of the Nation project. We are aware that this is particularly an issue for women who have neo adjuvant therapy as they may not see a breast care nurse until much later in their treatment or at all. We have fed the information we received form the State of the nation back to McGrath and CNSA (Cancer Nurses Society of Australia) and have been in close communication with them. There isn't an updated position statement re breast care nurses but I understand that this is a priority for them and we will maintain communication with them during this process.
As Marianne has mentioned this is one of BCNAs priorities from the State of the Nation report and we will continue to advocate to government for increased funding for metastatic breast care nurses to enable training for breast care nurses in treatment pathways for people with metastatic breast cancer. BCNA has been corresponding with the McGrath Foundation regarding this deliverable. We will keep you updated regarding further progress in this area. - My BC nurse was always too busy to listen to me. She constantly jumped in and finished my sentences, usually incorrectly so I would try again and she would jump in again. After the third attempt I usually gave up. Any concerns I had were always pushed aside unless I was crying, THEN I had her full attention. I now ask the chemo nurses if I have any concerns or wait until I see my Onco.
- Perhaps there needs to be a group from bcna that coud advocate for the improvement of the service
that there needs to be more vigilance of the accountabilty of the gov money that is used for this service - @brightspace. In my experience, it doesn't matter how strenuously you try to contact a McGrath Foundation nurse. I was fobbed off when I really needed to talk to someone.
- I went private & only saw my surgeon's practise nurse (who rarely got back to any of my queries. :( )
When I came home, there isn't a breast care nurse locally - the closest is Taree & they were 'in transition' waiting for a new BC Nurse as she had resigned.
When going thru my biopsy drama in Dec '18 - the Port Macquarie 'stand in' BC Nurse was one who let me down numerous times.
I had a call yesterday from the ACTUAL BC nurse from Port - saying my Rad Onc hadn't been able to contact me re my results due to a wrong phone number - GOD knows how many documents BOTH my phone numbers are on ....... HELLO!!!?
So I have never met one face to face!
I do not think they are McGrath BC nurses - just those available in my rural area. :(
