I am getting so fed up with my hospital and I am losing faith in them.
I didn’t have a great time while I was in for my op but don’t want to be a ‘complainer’ so keep assuring myself it will get better.
I have been given my results from the WLE by phone (only because I was in such a state I suspect) but still need more details and to know about my treatment plan.
I was told I would have an appointment within a week of my op and now it is over 3 weeks and I still havent got a date for an appointment let alone been seen.
Everyone I talk to at the hospital like my BCNs and consultants secretary say it is not good enough but nothing happens!!Here I am again sat waiting for a call back and not holding out much hope of getting one.
The BCNs are lovely ladies but don’t seem to have any ‘clout’ and say they are short staffed and cannot put on the number of clinics that they want to as their hands are tied.
To top it all I am worried about my breast which seems to be retaining fluid and swollen. Its not red or painful but is hard to touch and this has happened over the last few days. I rang my BCN who says they have been told they cannot add anyone on to a clinic and I now need to wait until tomorrow.
Has anyone experience of changing hospitals during treatment as I really don’t think anything is going to improve where I am.
Thanks
LooLoo x x
Hi Looloo - what a nightmare! Don’t ever worry about being a pain the botty where hospitals are concerned, complain away. Also, contact your local Primary Care Trust, mine were fantastic when I had to wait 3+ weeks for my CT Scan results. Just Google PCT and the name of your area.
They will also give (or should) the phone number of PALS which is some sort of liason service within the actual hospital.
Don’t be fobbed off tomorrow by the BCN, if they are too busy that’s their problem, not yours. JUST TURN UP AT THE CLINIC AND DEMAND TO BE SEEN, I would! I know that takes some guts, take a mate/partner and do it! I have no shame and would show them your breast! You wouldn’t believe the things I threatened to do when my scan results were ‘being dealt with’.
Don’t know about changing hospitals, fingers crossed though, now you have had your surgery, you will move onto a different set of experts if you are having chemo/rads etc.
I really wish you well, it’s hard dealing with the pain and healing, don’t get too stressed and wake up tomorrow prepared to be as rude as you need to be to get what you want!
Daisy xxxx
Hi LooLoo
I’m sorry to hear you’re having such an awful time with your hospital. Your description of events paints a very unacceptable picture.
I changed hospital. I struggled through last year with many things I found unsatisfactory but kept saying to people that I have to live with these people so need to keep my head down. In retrospect, that’s nonsense! We have the right and the power to move under changes introduced by the Government.
When I changed I went to my GP and told him the problems I’m having and asked him to refer me to the Marsden. He did that immediately for me with no hassle at all.
I’ve no idea where you live or what hospitals you have in your area. If you Google the NHS Choose and Book you’ll see what you are entitled to do. If you’re not happy and things are that bad … get out now and move on!
All the best to you
Gill
Hi Daisy, I am going to the hospital today and my OH is coming with me. When I first wake up my breast is ok but gets harder and harder through the day. What you say about moving on to differnt people is true, hadn’t thought about it like that. If I canactually get ‘in the system’ for appointments I may be ok but I can’t seem to get in there! The nurses blame the consultant and his secretary blames the nurses. I don’t care who is to blame I just want it sorted!Thanks for your support. I shall see how it goes this morning. Take care x
Hi Gillian, what you have said is how I feel. I don’t want to upset people who are supposed to be looking after me as I am concerned that I will be seen as a ‘problem patient’ but can it really get any worse? I don’t want special favours just an appointment and treatment plan would be nice. Thanks for the info re choose and book. I shall go and look at it now as there are alternative hospitals around here. I just keep thinking (and hoping) it will get better. Thanks for your support and Best Wishes LooLoo x
LooLoo
It’s so hard making decisions about treatment. I didn’t want to be seen as a problem patient either, but by moving and therefore subsequently discovering I was misdiagnosed, I have become a problem patient for my original hospital because I’ve put in a formal complaint. Now I have distance from them, that’s fine with me.
I really do believe that what you’ve stated in your posts is so unacceptable. Moving is much easier than we imagine - it really is. The difficulties are about shifting info from one hospital to another but it sounds to me like you’re at an early stage in all of this which should make it far easier than my situation was.
I hoped mine would get better - it did and it didn’t. I waited far too long. You obviously have to do what is right to you, but don’t be scared of change should you need to move on. The important thing with this diabolical disease is that you feel comfortable with the processes going on around you. Move if you have to … stay if you feel it’s the right thing to do.
Best of luck to you!
Gill
LooLoo - how did you get on at the hospital? I haven’t seen anyone in the news being done for exposing themselves in waiting rooms!
Post when you can so we know how you are doing.
Daisy xxxx
Hi Daisy and Gillian,
My appointment was ok. I actually met the head chappy for the first time which I didn’t know was going to happen. He agrees my breast is swollen and if it doesn’t go down before radiotherapy is due to start I will need to have it drained. I now don’t need an appointment with him, one of the ones I was waiting for, as we covered everything while I was there. If I had known I was going to see him I would have taken my list of questions I had at home although I remembered most of them. He was also very apologetic and said I have been overlooked in their appointment system which shouldn’t have happened but he also admitted I am not alone and he is trying to improve things. He has asked me to put details of the problems I have encountered in writing to help things improve. I am now waiting for an appointment with the oncologist to discuss my treatment plan which they said had been requested so will just have to wait!
Its still quite early days for me overall so I dont think I have my head around it all yet. Writing a letter of complaint is probably very necessary but I dont think I am quite redy to deal with it just yet. Have notes for when I am ready though!
It was good to get a copy of my histology report and I found out my cancer was tubular which I hadn’t know before.
I haven’t decided whether to move yet but I do now have copies of what I need should I decide to do so.
Thanks to you both for your support and interest. Hope you have had a good bank holiday weekend.
Best Wishes to all. LooLoo x x
Great news Looloo, chill out now and concentrate on healing. You need to be fighting fit for when the radiotherapy starts.
As for the letter, I would do it, but when you are ready. If things are not brought to their attention, nothing will change and the next person lost in the system will have to go through what you have and that is so unfair.
How are you healing? I do hope you are painfree. I didn’t have any pain in my breast, but my armpit/arm did play me up when the nodes were removed, but it’s not forever.
Keep smiling matey, it is early days for you and things will sink in slowly.
Daisy xxxx
Hi LooLoo
Good to hear that at least there’s an acknowledgement of your difficulties. I can understand your frustration of meeting the head person and not having your questions with you!!
You can take your time regards complaints. There’s usually a 6 month period and if you have another issue in the meantime you can give yourself another 6 months and add the first issue to it.
I really hope things move forward well for you now.
Best of luck
Gill