Great idea to pop into Maggie’s, I love the fact you can just pop in and there’s ways someone to chat to.
I can oily imagine changing hospital and teams can be daunting but I’m sure all your notes have been transferred across nd that will have read the, before your appointment. Make sure you get your nurse contact number should you need it in the future. Here in Wales we have open access forever, meaning you don’t have to see GP for referral back to them, they will book you in to see a breast surgeon directly. Any niggles or worries about bc you can call them.
I’m in Birmingham. I think the hospital is just swamped but i still feel annoyed that this new area has been known about for 7 months. I feel like the person on a work night out whose food doesn’t come with everyone’s and who has to eat alone as everyone else already finished!
Hi @chillout365 and @JoanneN. I havent contacted PALS. I’m scared that I’ll be labelled a troublemaker and they’ll make me wait even more. I know that’s probably silly. The nurses and my surgeon are really lovely and I don’t want to get them in trouble. But I do feel my case has been handled badly. They’ve known about this area of concern since December and it’s only now, when about to move on from surgery to oncology, that they bring it up. I’ve had 6 week waits for every single pathology. If they’d tackled this earlier, I’d probably be with oncologist by now. Shoukd I complain? X
While I understand you not wanting to be labelled a trouble maker and I would be exactly the same as I’m a complete nervous Nelly. But I lodged an official complaint about my rheumatology doctor 18 months ago after he accused me of wasting nhs time as I didn’t need a hip replacement, 3 months later I was told I needed both hips replaced and it was urgent. I’ve now got the nicest consultant possible. So do what I did and complain. I promise you it won’t come back on you. Sending massive big hugs xxx
Hello you! I think you have every right to say something, if they have know about this area of concern they should have informed you and been transparent. Your journey throughout this has been very difficult and I think you are amazing in keeping it all together. We were diagnosed at a similar time and I really feel for you not knowing what is going on.
I hope that soon you will have a full plan laid out from your oncologist and then you can start to focus on getting through this and start on your recovery.
It’s not as though you are complaining about the personnel it sounds like some sort of error of communication/ administration and it needs highlighting to help prevent it happening again. It’s not unreasonable in the circumstances for you to bring it up as you have already had several surgeries so the opportunity was there deal with it. As well as the inconvenience and distress that it’s causing you it means that you are now having extra procedures .Putting you through this stuff again when it could have been done already is not just stressful and upsetting for you but it’s an inefficient use of time and services . I’m now feeling angry on your behalf . I also don’t like being labeled a trouble maker either but in your shoes I would be going to PALS you could actually tell your BCN that you’re going to do it for the reasons above and make it clear that it’s nothing to do with them or your surgeon but it’s because somewhere along the line something has gone amiss and it’s prolonging everything unnecessarily . Xx
Hi @bluesatsuma I have never put in a complaint of this type myself so am not sure what the process is but maybe it doesn’t have to be completely accusatory and adversarial in tone? Lay out a timeline and the facts so it becomes clear that there hasn’t been joined up thinking within the MDT and make it clear what the impact of this has been on you. Position it as honest feedback maybe? I dunno but you need to feel like you have a bit of control over the situation and you need to feel heard by them. You’ve got lots of us in your corner and though we can’t actually do anything practical to resolve this, use us as both a sounding board and a group of cheer leaders. Whatever you decide to do you’ll have our support.
Thank you all again. Its been a very emotional week with my middle child leaving primary, work stress and all this cancer stuff. I will contact PALS tomorrow. I think it needs to be raised for all the reasons you suggested in the last few posts. Thank you for your solidarity and empathy.
Hi, having worked in the NHS for 35 years, if you voice your concerns you do receive better care in the future. You can also point out the parts of your care that has been good. By highlighting what has gone wrong this could change practice and prevent a similar event occurring to other women in the future.
I found a lump at 3 AM one morning early January, I did a online referral at 6 AM. I saw my GP at 9.00 that Wednesday morning and I was seen at my local hospital on the Friday, two days after finding a breast lump. I realise having medical knowledge helped, as I was able to communicate my high risk features which were dense breasts, late menopause and 2 paternal cousins who had developed breast cancer. Thirty one days later I had a lumpectomy, received results (apart from HER2) and a week later had a total node clearance, 17 days following lumpectomy.
If one hospital can provide such speedy treatment why can’t others. I feel angry on your behalf bluesatsuma. I wish you well with your future treatments.
Hi @bluesatsuma - it’s probably worthwhile going to PALS. I worked in admin for the NHS and I know they do work on incident reports and complaints to improve their service and look into what went wrong. So really you’re helping them and also future patients. Difficult though I know! Hoping your life calms a bit soon
@bluesatsuma remember we are all with you in spirit when you contact PALS today. Also remember you are trying to save other people going through what you have been through. Big hug
I had to raise a complaint with my GP who put me with a Physician Associate, who had 2 years medical training but not a doctor. I saw her when I found my lump last year and she told me it probably wasn’t anything to worry about as it was smooth and more concerning would be irregular. But I did have cancer! I wanted to complain last year but with everything going on I found it hard. This year I had a UTI and was told by oncology I needed an urgent appointment they put me in with her again. She was dismissive of the UTI and vaginal atrophy issues and said she could t do anything without a specialist letter re atrophy. She also seemed to gloat that she referred me to the Breast unit, when in fact the first thing I said was I needed a referral as I’d had an issue the year before in the same breast. She wasn’t happy that I called her out on her previous ‘reassurance’. I left her room in tears and went to reception to ask to see a proper doctor. They saw the Physician Associate who said they’d run everything past the on call doctor, maybe after I left but not while I was there! The doctor agreed with her and refused to see me!
I wrote a complaint and worried about them telling me to find another GP. As usual they did back each other up. But when I got my specialist letter 5 weeks later, they still tried to get me to come in for appointment 2 weeks later. I refused this appointment and said I’ve been talking about my issue since January and write a complaint 5 weeks ago. Suffice to say the senior partner GP rang me the next day and it was sorted over the phone. She said to ask for her with any further issues. I talked her through everything the specialist menopause and oncology team and she was pleased to receive that information as she knew someone else with bc. I also had to ask for cholesterol test for my Letrozole which I’ve been on 6 months, they were supposed to do a baseline, she wasn’t aware this should happen!
So overall the complaint has educated the GP and hopefully will help others in the future.
Let us know how you get on with PALS, I’m sure they will be lovely.
@bluesatsuma … please raise this, you aren’t making a fuss. It will help you and hopefully help another woman in the future.
This has been excruciating for you … I can feel your pain. Love your analogy of the meal!!! We’ll still be by your side on here throughout no matter how long it takes.
I hope having a summer break from work will give you a bit of breathing space and having the kids around will be a distraction at least… but remember my other message that said pull in every favour you can now to delegate as much as you can!!!
If all else fails, my friend keeps telling me ‘when in hell, just keep on going’!!!
Understand how you both feel, I also had very bad treatment, didn’t want to complain for all the reasons of being labelled, however I know I should of done, in the end had to change my hospital, all was well in the end. However you have 5 years to follow this up.
Have a nice weekend, enjoy this beautiful weather.
Hi all. Thank you all so much for the moral support. I have emailed my complaint. I praised my surgeon and nurses in it, making it clear that this was about communication and time, rather than anyone specific. I put all the timeline in. I’ll see if anything comes from it.
If nothing else, at least I’ve got it off my chest!
You ladies are all amazing, and I’m very grateful for your replies, support and virtual hugs. A lot of my friends and family are wonderful, but they don’t truly appreciate how much this is emotionally draining me. Xxx
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. I also don’t like being labeled a trouble maker either but in your shoes I would be going to PALS you could actually tell your BCN that you’re going to do it for the reasons above and make it clear that it’s nothing to do with them or your surgeon but it’s because somewhere along the line something has gone amiss and it’s prolonging everything unnecessarily . Xx
