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Breast care support nurses/ McGrath breast nurses - Do they follow through?

AbbydogAbbydog Adelaide, South AustraliaMember Posts: 153
Has anyone actually received ongoing support from any of these nurses?
My experience was in a private hospital.
Once  I was over the immediate surgical recovery, and without my reaching out there was no follow up.
I had thought before my journey, that these nurses helped through all of the stages of this cancer treatment. 
Ie Surgery, Chemo, Radiotherapy etc.
I phoned a McGrath nurse that came up as local, on my internet search.
She was working at a public hospital, in outpatients. 
Our conversation was interrupted several times by her other work.
This wasn't very helpful.
How and when have others seen these nurses? How frequent? How easily?
How helpful have you found them? Some of you refer to them often in your posts.
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Comments

  • AfraserAfraser MelbourneMember Posts: 3,199
    Dear @Abbydog
    Many people have found McGrath nurses excellent, but I was never referred to one. However I found both my surgeon’s nurse and the senior nurse at day oncology to be terrific - calm, experienced and immensely helpful. Both provided excellent advice and one referred me to both my lymphoedema therapist and a counsellor, both of whom were not only invaluable, but a great ‘match’ for my personality. Asking can be difficult, especially asking busy people, but sometimes it pays off. Best wishes. 
  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,677
    Hi @Abbydog McGrath nurses vary across the country. Mine liked to be in my face but would just pat my hand and say everything would be okay. Not helpful when I was in pain and no-one knew what was causing it. If I wanted action I had to create it myself. My friend had the other McGrath nurse available to us. Once the doctors told her the metastatic was terminal, the nurse dumped her real quick. However, I have since moved and I received a call from the local McGrath nurse here to make sure I was okay. I finished active treatment one year prior to this. Since then I have had three other contacts with her in a year, just to make sure I am okay.
  • Dory65Dory65 Member Posts: 233
    Hi @Abbydog,
    I've never even met either of the Breast Care Nurses assigned to me. Apart from asking my size (over the phone) for the post surgery bra, 12 months ago, I had to initiate all contact via email or phone. A far cry from the glossy brochures flashed about for fundraising. The public patient physiotherapist assigned to me has been fabulous, thankfully. I'm not sure what the McGrath nurses' job description is. Seems pretty vague and random.
  • CathywCathyw Member Posts: 50
    My experience sounds a lot more positive, I have a BC nurse at all my surgeon’s appointments, still don’t know how they know. Tammy was also at my hospital room the next day after my surgery to check and change the dressings. She has always been available for my calls, if I’ve had any questions. She is based at outpatients at my local hospital. If she’s not available, there is another one available for follow up. I have no complaints that’s for sure.
  • RomlaRomla AdelaideMember Posts: 2,047
    @Abbydog I am in SA too and my experience was same - probably same private hospital. Even when  I arrived for surgery she was more interested in promoting an event at a top private school for all sorts of products and services to be sold to  breast cancer people. Much later in the year I met women who went to a public hospital whose experience complete opposite with regular follow ups by phone including 12 months later. My private hospital was good but once paid care ceased.Tbh felt like the McGrath nurse was was more socialite than nurse.
  • AbbydogAbbydog Adelaide, South AustraliaMember Posts: 153
    Everyones comments are very interesting.
    They certainly sound like they are readily available, 'in the media.'


  • arpiearpie Mid North Coast, NSWMember Posts: 4,209
    @Abbydog - I had my surgery in Sydney in a private hospital & whilst my surgeon had his own 'breast care nurse' - we didn't have much interaction - a bit like @romla's experience re paid care. I don't recall her attending any of my meetings with the surgeon ... tho I saw her in the office & she took my details etc.  After surgery Sometimes not getting back to me when I left messages/queries. She had measured me up for the 'free Berlei Bra' and the one I received didn't fit. Not sure how she got that wrong!  At the time, my 'local' breast care nurse was on indefinite leave & no-one had been appointed to take her place - so I was making all my appointments etc for Rads & Rad Onc etc.  But when I saw my Onc a few weeks back & needed CT & Bone Scan appointments, the current Breast Care Nurse took care of all of that - which I am sure got me in earlier than if I'd rung myself.

    I think they are trying to get more and more 'McGrath Nurses' around the country - but most would be in the major cities, not so many in rural areas, altho we have heaps of new cases diagnosed every year as well.
  • AbbydogAbbydog Adelaide, South AustraliaMember Posts: 153
    Dear arpie,
    I live in a city, Adelaide, and nurses aren't readily available.
    Maybe there are more in the eastern states.

  • LocksleyLocksley Macedon Ranges, VictoriaMember Posts: 187
    Hi Everyone
    I met with breast care nurses as a patient at Public Hospital.  They talked me through each stage of treatment I was to have (my head was spinning most of the time)  and came to see me after surgery in ward next day.   I had a lot of trouble with pain relief in hospital and I mentioned to them as I was being discharged a few days later I would have had a lot less pain if I was advised to use the bag they gave me to carry the drain bottles in hospital. I remember being advised to use the bag at home.  I was annoyed by this - you think its something they should have checked for when checking in on me.    I remember getting a follow up phone call a few days later at home.    A couple of times since I have had questions for the breast care nurse.   I have rung them and emailed them.  Sometimes it does require me to follow up with them but I keep ringing and emailing them until I get a response.   
  • BlondyBlondy Ruse Member Posts: 211
    I think some of the experiences here, show that a lot more McGrath nurses are needed. If you go to their website all the statistics are there, and what they offer. The team work their butts off fund-raising to supply these nurses. I help out at the cricket ground in January for the biggie fund-raiser and 2 years ago a few million was donated by the government over a few years. The nurses are only taken on for 3 years and if there is no funding to pay them they are gone. They are slowly winning the battle but like all charities this covid year, the coffers will be running low. Personally I am thankful for seeing my McGrath BCN the morning after surgery and the next. She put me in the system where I received a bra etc. She was at my first oncology meeting to take me through everything and make sure I understood. My nurse covers a large geographical area so sometimes I might see her at the therapy centre, but I always knew she was on the end of the phone if I needed her. We are all different, and I was happy to not see her and know that she was with others that needed her more. The qualifications are quite high for becoming a McGrath BCN. Unfortunately some people never get to see one because there aren't enough to go round. 
  • AbbydogAbbydog Adelaide, South AustraliaMember Posts: 153
    Dear Blonde,
    Your BCN put you in the system. You were very lucky.
    I made contact with one I found on their website.
    I had no further contact with her.
    As I said before she was working at a Public Hospital, and interrupted my call several times for her other work, in Outpatients.
    She didn't seem to have time for me. I wasn't impressed or helped.


  • jennyssjennyss Western NSWMember Posts: 949
    My BC trip in a large regional centre was private hospital for ops, then public for chemo and radiotherapy. My experience with 'my' McGrath BCN was very positive. She came to see me pre and post op; then at every chemo session. I think she was very proactive in attending case meetings at the Cancer Centre every week. Also advocated for me to start my chemo ASAP; and also helped me with info and paperwork for the radiotherapy, access to Can Assist support,  and accommodation at a regional cancer care lodge. My contact with my BCN finished when I came home after radiotherapy. Lucky me, I didn't have any complications.
    There is certainly a wide range experiences described above; from quite negative to very positive.The McGrath BCN experience should be more consistent across public, private, city and country. Reminds me of the wide range of out of pocket expenses which has been described in the last few years, with some action taken I believe???

  • BlondyBlondy Ruse Member Posts: 211
    @Abbydog . Sad that a BCN would let the side down and a McGrath one too. I hope too many other people didn't experience the same thing. We do need to be treated with kid gloves when going through all the treatment, and if not we really notice it. I hope you're doing well now. 
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