I am now 22 months into my OC grade 3 (I think!) treatment. Had debulking and still on 3 weekly chemo.
Reflecting on these months I have had some fantastic cutting edge, compassionate and highly skilled treatment. I am a big fan of the NHS, have worked in it all my life and know I would not have survived without it.
However I also know that I have also had some really crappy treatment. Varying from mediocre, to unacceptable, thoughtless, cruel and down right dangerous.
But I have never complained, never challenged or questioned.
I know things will not improve if they are not highlighted as problems.
I am now considering what I should do. Have other people had similar experiences? Have you let them pass or not and why?
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Flamingobeef18
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Well done on getting through your treatment , you are definitely not alone here.
I was operated on the first time six years ago this month. Lots went wrong and I could not let it go, so I complained. I manage one part of the work of these individuals , so it made things very tricky.
This however was at least as bad , but probably even worse than the illness. A lot depends on which profession and grade , that you have issues with. If it was the medics , then my advice to you would be not to do it. Save your energy to get stronger. Having said that there has since been a huge scandal involving the team that I had issues with , a case of cold comfort. I
So while complaining was the correct thing to do , I wouldn't do it had I known how awful it would be.
Take care of yourself
Love and hugs xxx
I can empathise with you, I have certain reservations about the early days of diagnosis and surgery, My recurrence was not acknowledged until I obtained an mri from a rheumatologist. Well, I got my treatment plan which worked so I decided to spend my energy fighting the illness and not the system. I did make my point to a certain person he was not god, and I am happy with that. I know mistakes are made and covered up and in reality if you have worked in the NHS you would be aware it is difficult to take any action because ranks would be closed against you. I would feel if people do make mistakes, they learn from them and it saves some one else from being an error, I also feel because your records are in the same hospital, people become more careful with your treatment, Maybe I am living in lala land but that worked for me,
Thank you both for your replies. You both make very interesting points. I too have usually decided to focus on my recovery and after your dreadful experience Charlie perhaps I was correct to do so.
However having worked in the NHS I do find it very difficult to be accepting of bad treatment. I know mistakes can happen but I struggle to forgive poor, thoughtless, emotionally unintelligent care.
I am particularly tired of feeling obliged to play the passive and grateful patient. The one who apologises for not understanding things that were never actually explained to me, the one who says sure it is ok you kept me waiting four hours for my chemo treatment, the one who has to listen sympathetically to how stressed my healthcare worker is for the hundredth time.
I'm the same. I have had many, MANY reasons to raise absolute hell since my first tumor in 2013. I've never done it once.
(Best example is that the surgeon decided in 2013 mid surgery not to remove my ovary with a borderline tumor in it, because without any consultation with me he decided that "it'd be a shame if I couldn't have babies." ...Then my GP refused to send me for a scan in May 2015 when I started getting extreme pain in my ovary, and sent me to physio and suggested therapy to help me "get past this obsession with my ovary." My cancerous tumor was found in August by accident during a surgery for endometriosis...)
Even when the lady taking my blood test blew her nose, didn't wash her hands, and then tried to take blood without gloves, I didn't complain. (I pretended to sneeze myself, and she washed her hands in disgust. I may be a coward about confrontation, but I am creative...)
I think part of it is simply that I wasn't aware of how horrifically substandard my care was until I got into the department I'm with now... But the rest of it is a very complicated mess of "good girl" syndrome where I don't want to make a fuss, and not having the self esteem or confidence to speak out about what I need.
I have been raised all my life to be the good girl who is polite, doesn't make a fuss, and smiles at people even when she doesn't feel like it.
I love the NHS and I've also worked in it. And, yes, I did complain to PALS about certain aspects of my treatment, mainly chemo. Things did get better for me and, on balance, I'm glad I did it, because I think it helped other people as well. Cancer is rubbish enough, without having to put up with being treated thoughtlessly. But try not to stress yourself any further. Love and hugs, Deb x
I agree and hold the NHS in high esteem but ....... Diagnosed Jan 2014 with staged 4 metastatic PPC with CA 125 of 5000. Had six rounds of carbo/ paclitaxol with avastin added to last two. Debulking surgery planned for early August and arrived on due date. After waiting in theatre gown having seen surgeon and aneasthetist etc, waited for six hours, only to be told that my operation had been postponed for six weeks because there was a lack of intensive care beds.
As you can imagine I was furious and decided to complain. I didn't blame the NHS, but the government for lack of funding. I contacted my local paper, radio Berkshire and the Jeremy Vine Show! They were all very interested and The Henley Standard ran an article on it's front page. I can tell you that following the publicity, the hospital entered into discussions for extra funding to add more intensive care beds.
So you see sometimes a little complaint can do some good.
I have to tell you that I am doing fine and went into remission for a year after surgery, but am now on a new cycle of carbo/caelyx, which seems to be working. My last CA125 was 82 and falling! My advice is lots of positive thinking and please read 'Mind Over Medicine' by Lissa Rankin MD. Complaining is not a bad thing ........
I have always said,you go into cancer like a lamb but after awhile you learn that sometimes you have to roar like a lion to be heard,and I don't mean shouting but,trying to have the strength and knowledge to assert your rights and intitlements.
Where I live we have a gynae cancer advisory group consisting of ladies with cancer and the clinical specialist nurse.The doctors can attend as well and the gynae/oncologist is very supportive .The nurse will take any concerns forward to the team.The group have also been responsible for local policies to be developed eg "breaking bad news".We meet 4 times a year and one of us will attend the cancer network meetings at the hospital.
This is one way of taking concerns forward without individuals having to complain unless of course you were harmed.
This group has been going for 11 years now-we are not a support group - we also have that separately.
Good luck with whatever you decide to do.People usually complain to ensure that others receive better care.
Thank you for all your comments and suggestions. The "good girl syndrome" is something I suffer from and hate myself for.
The idea of an advisory group sounds just what I am looking for. To be able to feedback a patients experience to the professionals and make improvements would be brilliant.
I will do some digging to see whether we already have something like this in my area which is Dudley in the West Midlands. (Please tell me if anyone knows.) I will also try again to find out whether I have a local Clincal Specialist Nurse who I can contact. I abandoned previous attempts to find out when my enquiries were met with blank looks.
I had a horrific time with the NHS in Belfast and do hold them responsible for my diagnosis at stage 4 but I have never challenged them. There were so many errors made but my prognosis was so poor I had to focus on fighting for my life.
I met the Clinical Director of the hospital and at the time of my diagnosis and he said he knew there was problems but I had two fights to choose from..... The hospital or my life. It was good advice even though he was covering his own and his department ass. I chose the latter. That probably suited him perfectly but I didn't have the time or energy for the first battle. I have not revisited and don't think I ever will. Someone told me that your children can do it.
We should complain more if only to help others but there are too many good girls among us that just smile and say nothing. That was me but I wouldn't do it now because I know if I had been more assertive I wouldn't have been as far down the track with this cancer that I ended up xo
Dear Julie I feel so sorry for what happened to you. This disease we all have is so unfair but to add to it the injustice you have suffered is too awful.
I am sure you chose the right fight but how much real choice did you have? I think your story shows a lack of integrity and morality in the people in whom you had placed your trust in. It has nothing to do with any lack on your behalf.
I hope that "clinical director" has real trouble sleeping at night.
It was a calamity of errors and when I look back the answer was staring me in the face but I never forcefully challenged them even though I knew there was something seriously wrong.
You are right though there was no choice I had to put myself first and go get the second opinion that has at least prolonged my life.
My silver lining in it all is that if I hadn't went to Christies for that second opinion I wouldn't know that I had the BRCA 1 gene. My daughter has tested positive too so hopefully this saves my daughter from having to go through this awful disease as she is going to have preventative surgery. Sadly one day I will lose my life to this cancer but to save my children and eventually their families from this gives me comfort. I know a parent would take this rather than their children. sorry this is deep but I feel so strongly that it's the one good thing that has come out of me having cancer xo
If you feel you can, then do. I intend to when I feel well. I felt lost and in limbo through my local health authority who messed me about no end. I was disappointed with the level of treatment/lack of empathy afforded to me by those who should know better. It isn't the NHS that is at fault, but the mismanagement of it. If we do nothing, it will continue.
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