BC nurses I am truly horrified and depressed by some of the above posts - especially the crude comment about crabs. These nurses need reporting or at least, discussing their inadequacies with the PALS service - that is if you even have one. I thought the care and help I got was “normal” as I didn’t know anyone with breast cancer but only now realise I got an exceptional nurse - pity she is retiring this year. She came to see me every single morning when I had my two ops, has been at every consultation, and even greets me by name with a hug and says “You look so well, Liz.” She doesn’t do home visits, but I only had to ring her with a problem and she sorted it out within 24 hours. She even had special training to aspirate seromas, which some of the junior doctors couldn’t do. Guess y’all will have to come and live in Devon or South East Cornwall - where there has been no snow by the way!
Perhaps BCC can do something about these so-called specialist nurses? It makes me so cross to think that women/men in a life threatening situation are not getting the help they so badly need.
Aaargh!!
I wish I had the chance to fill out the questionnaire ( never heard of it) because my bc nurse has been an absolute godsend.
She is very well-educated and knowledgeable and not at all patronising. She always returns my calls promptly and calls every now and again just to see how I am doing.
I don’t know what the questionnaire asks as such but if I had my opinion I would say we don’t necessarily need more bc nurses but the ones we do have should be passionate about what they do, well-informed and keen to keep up-to-date with the issues that affect us. I really have won a gold watch with mine.
Just for the record, her name is Diane and she works at the Western Infirmary in Glasgow.
Lola x
I have no complaints about the care that I got from my BC nurse but I wonder about the care given to long term BC sufferers like myself. The BC nurse seems to be geared to those just diagnosed and going through operations etc and, for the most part that works well nationally from most of the posts here. I, however, am left wondering what my place in the system is.
The present system does not have time to care for the secondary patients like myself and, although I can and do call my BC nurse on occasions, I do not feel part of an on-going support network - I am forgotten until I call.
Us secondary patients tend to have Macmillan nurses (if anything at all) and very good they are too but they are not BC specialists. I have no one that I have regular contact with that can update me on the latest thinking on BC or generally keep me in the loop. I am not talking here about getting answers to questions (my BC nurse, Macmillan nurse, Onc, GP can all do that) it is all the things that I don’t know that I don’t know - if that makes sense. For example - my good boob has put on more weight than my reconstructed one over the years (a bit like the rest of me!) and I was having problems with cossies and close fitted tops in the summer etc. I called my BC nurse in desperation as I couldn’t think of a solution. It wasn’t a problem as a small infill prosthesis can be used but the thing is I didn’t know about these as they weren’t around (or I didn’t see them) when I was going through all the re-construction bit.
I don’t know what the answer is (other than forums like this) but I think the problem is symptomatic of all western medicine in that the care is not ‘joined up’, it is there but spread across many disciplines and experts and somehow it is the patient (the person least able) who is left to negotiate the maze - is it any wonder we end up wandering around lost!!
Sorry this is so long…
blondie
Response from Breast Cancer Care Hi,
I have been very interested to see this thread about breast care nurses and the wide range of views provided. The questionnaire that was sent to campaign panel members was designed to gather a snapshot of views from the campaign panel about their experience of access to breast care nurses and the support they provided. We are not at this stage carrying out a large piece of survey work on this issue. However, we are very happy to hear from a wider range of people affected by breast cancer. If you would like to complete the questionnaire on breast care nurses please email me at campaigns-at-breastcancercare.org.uk and I will send you a copy.
Best wishes,
Anna Wood
Anna Wood
Policy & Campaigns Manager
help pls! It’s probably me…but I’ve tried emailin several times for questionnaire + it keeps undeliverin itself right back at me :o(
emails bouncing It’s not just you - it keeps bouncing back tome as well.
BCC - please tell us what is happening - we want to be involved and give you are feedback
Thanks
Kate
email the moderator Hi
I’m sorry you are having problems emailing the campaigns team for the questionnaire, there is a technical problem with the system which we are trying to rectify.
If in the meantime you could email the moderator on the link below we will pass on your request to the campaign team.
Kind Regards
Forum Host
Breast Cancer Care
Thanks got it now! :o)
Deb
xxxx
Anna Wood it would help clear up what is BCNs’ function if we all knew exactly what they are supposed to do for us.
Then we could evaluate our own BCN objectively. dilly
Job descriptions Dilly,
I think you made a good point that it would be helpful to know the typical BCN job description. It is also possible that a particular BCN might be scoring well against it, while not well thought of by the patients, because the job description is unsuitable? Maybe between us we could suggest a better one?
I’m sure someone has written into the job description that they are supposed to show loads of sympathy, but several of us simply don’t want it.
When I used the BCC “Ask the nurse” email service recently, I was thoroughly irritated about the amount of irrelevant padding in the reply. I just wanted straight answers to straight questions. However, when I got an evaluation questionnaire, it was obvious that the nurses are required to express sympathy / tell you about other BCC services, even when it isn’t appropriate, you haven’t asked and don’t want to know.
Holey.
I personally have not needed my bcn for “tea and sympatthy”, in fact I haven’t needed them for much at all, but like Dilly when I have needed something they have delivered. Its obvious from this thread how differant the service is ranging from brilliant to completely useless.
I was a trained nurse working in A&E for nearly 22 years. When you are dealing with traumatic situations and you have no previous relationship with the people you’re dealing with you have to do and say what you think is appropriate for the situation. A lot of people want a lot of “padding” with their info and indeed don’t want straight answers at all. Others say they want the truth but in fact only want it if its positive. Its a difficult judgement call!
I know this is slightly differant from the bcn role but I think she has a difficult job. Just how much info can this person deal with? How should I approach this person? Do they really want all the facts now, are they going to be able to deal with it? Mine now know that I am a straight talking information fiend and treat me accordingly but they didn’t know that initially.
Claire x
Agree with Claire You sound a really nice nurse to me!
Yes bcns should be responsive to individual patients needs (and we alll are different, but it takes some skill to recognise the ‘difference’ of each patient.) The fisrt bcn I met quickly sussed me out…that I wanted practical advice (fitting a prosthesis…I only met her at surgery as I was in the private system prior to that for pre surgery chemo). I think if I had wanted a shoulder to cry on (as many women do) she’d have been great for that too but basically she listened (not just with her ears) to what I needed.
I would like to see everoyone with cancer (not just breast acncer ) havign access to a nurse who can give practical advice, information and emotional support…but they need to be well trained and sensitive to the doverse needs of people they meet…one size fits all isn’t good enuf.
Jane
I had a dreadful experience with the BC Nurses in our area. When I was diagnosed they weren’t to be found anywhere and I was sent for a coffee whilst they were located - a general nurse then spent some time with me when they couldn’t be found. I then had to go for lymph node removal as a day patient and was ready to go home at 2pm but had to wait until around 4pm because yet again they couldn’t be found. When eventually one turned up she spent 20 minutes lecturing me on drinking wine gave me a leaflet for exercises and told me “it wasn’t th end of the world”. All I could hear was my husband taking sharp intakes of breath the otherside of the curtain. I was left feeling patronised and extremely frustrated. Since then I phoned once to find out some information on spread/seconardies etc etc and had to wait ages for someone to call me back.
My Consultant and Oncologist are fabulous and really helpful which has made up for this nasty experience.
At this point I joined this site and its been fab - I appreciate that everyone has different experiences but at the start of this crappy disease I have to say you are only interested in your own diagnosis/prognosis.
Speaking to other women in the unit their experiences have been pretty similar to mine so who knows maybe a survey like this will make a difference.
For Clariana I have deleted the post you made in this thread about HPV after realising that you had started a new thread with it.
Kind regards
Forum Host
Breast Cancer Care
Breast Care Nurses I am really surprised reading all these posts. To be honest, for the last almost two years I have been campaigning for a full time breast care nurse at my local district hospital. I started treatment in March 2003 and have to say my whole " cancer journey" was immaculate!!! The whole breast Care Team, Oncologist, Surgeon and Breast Care Nurse(s) - two of them. One full time and one part time, were brilliant!! Then the full timer had the nerve to get pregnant (God love her :o))) and left. We now have one part time B.C. Nurse and no prospect of any replacement (NHS funding rears it’s ugly head again!!!) This is even though NICE guidelines state that a Breast Care Nurse should be reachable at all times throughout the working week. The demise of the Breast Care Nurse is a very serious issue as far as I am concerned, and to anyone who has had a bad experience with their breast care nurse, I feel very sad for you. They are a link between the patient and the hospital way after the treatment stage is over. Someone you can contact with maybe a small problem you think isn’t worth bothering your Doctor about. It’s a sorry state when the NHS just wants to drag you along the conveyor belt and “chuck” you off the other end, all better now, get on with your life!!! Nice thought.
Joyce x
just thought I’d put my tuppenceworth in.My breast care nurse was worse than useless- and that is being kind(I know I was probably unlucky)If I needed any advice I had to phone my friend who was also on chemo to ask her BC nurse for me! I seen her altogether 4/5 times,She never told me how to contact her and when I complained to my oncologist I had a phonecall from her telling me I was the type to sail through chemo… I think I had to with her around!
Breast Care Nurses Hi Cherub
Just read your post as I was “browsing”. You are a similar person to me. I luckily never needed much support during my treatment, and since (now four years). However, there is one point which I think is worth making. The advantage of being “strong” is you are in the enviable position of being able to help people who are not so strong. Believe me I have seen it lots of times. Encouraging and “jollying " them along, often benefits the more vunerable much more than if it has come from their doctor or breast care nurse. A bit like having a baby…ask a man to describe it, he can’t he hasn’t got the tee shirt!! I’ve had a Chemo patient say to me “but I’m not like you, I can’t think positive”. I just say… “At least you can try!” It must have sparked something in her because when I went off to my chemo session, she asked my husband " do you think positive thinking can cure you?” He said "Yes I do…but the Chemotherapy helps too!!! " . :o)))) Good answer Jim!!
I did (although not so much these days) attend lots of Support Group meetings with the sole purpose of supporting the more vunerable members of the group.
Joyce x
Thanks for your comments Joyce. Like you, I have thought if I could be of any use helping out the more vulnerable. I am in contact via email with 2 ladies I met in hospital last year and I contact them every week to make sure they are OK and bearing up.
I have also seen a couple of websites for local support/pressure groups, but the sites are very amateur and not at all professional. OH is a web designer and we are considering redoing their sites voluntarily. I am currently checking out what they are exactly doing on the BC front. It would just be nice to offer something to a group helping ladies who are struggling with things.
I am over half way through rads and am still feeling really strong, positive and confident. We had started exploring a lot of new avenues work wise when I was diagnosed with this and I feel I have a lot to look forward to.
Wea rae all vulnerable…we are all strong I feel rather uncomfortable with the idea that some women are stronger or better at coping with breast cancer than others and should therefore lend a hand to the more vulnerable. I think support groups are there for mutual support…people give and take at different times. We all have good and bad times, we all struggle sometimes, we all experience cancer a bit differently from the next woman…we all have something to give and none of us has cracked the perfect solution to living with cancer.
I know I hate being patronised whoever’s doing the patronising.
Jane
BCN Quote I saw this breast care nurse quote in a newspaper:
“It’s the ones who try to be brave I often worry about more as, down the line, they may find things very difficult”.
I think this is a very true statement. I have met a number of people who have had breast cancer who seem to have adopted the jolly, stiff upper lip approach to dealing with the disease, mainly I think to protect their loved ones rather than themselves.
I don’t think that people who adopt the jolly approach are any more strong and less vulnerable than those who don’t. I would never want to receive support from someone that I suspected might not have properly confronted and worked through their own fears and emotions about breast cancer.