So I went along to a local complaints resolution meeting today with my local emergency department. They had sent me home in October saying I had gallstones and to wait for a routine ultrasound. I told them I had ascites and was breathless due to the ascites. They said they were not concerned.
Today I sat with the complaints panel and had to endure an hour of a recorded discussion where the emergency department consultant told me how upset the attending dr had been when he found out I had been diagnosed with oc less than 24 hours after being discharged from a and e. Not as upset as I was I bet! I questioned the poor documentation in my notes and asked why the consultant had not weighed me despite me informing him of my weight loss and why it was recorded that I presented with a 5 day history of abdominal pain when I had been presenting for 8 months. The emergency consultant apologised and then tried to explain that they were under extreme pressure. I said I understood the pressures nhs staff were under ( as I am a nurse) but said that did not make it right or acceptable that an accurate medical history was not taken. I then got a lecture on the systemic failings of the nhs and told that I was a victim of these failings. I said if I had listened to their advice and gone home and rested and gone back to work the next week things would have been a lot worse considering I was diagnosed with 3 c and had several litres of ascitic fluid drained off less than 48 hours later. They claim they requested an urgent ultrasound and had to back track when I produced paperwork that said routine. The emergency consultant then said to me ‘ with all due respect we are very busy and can’t stop and say no more patients in order to finish detailed paperwork like in the private sector’. I said I was under extreme pressure in the private sector and I also could not say no more patients considering I am a cns team of one and had to also complete my paperwork thoroughly before leaving. I said I could not listen to a patients history and only write down what I thought important as how could I come to an accurate differential diagnosis. So the apologies kept on coming and the nhs systemic failings kept being repeated.i was told I would get a recording of the meeting and advice on how to contact the parliamentary ombudsman if I was not happy. I said I would contact the ombudsman and my local mp and Jeremy hunt. The consultant then asked me why I wished to contact Jeremy Hunt. I said ‘ to discuss the systemic failings of the nhs which you have just mentioned’. My husband found the meeting highly entertaining. He insists on coming to every medical appointment purely for the entertainment value.
My care in the private sector has been even more entertaining. The gynae consultant who told me there was nothing wrong with me in June last year and sent me away saying I should feel ‘reassured’ without bloods or any form of physical examination only wrote a few lines in my consultation. I retrieved my records to find no family history documented about losing both my parents to cancer and my mothers gynae history which was unclear ( as she died at 47)but she had a hysterectomy and died of lymphoma and father died of prostate ca. No record of my collapse in the February with ovarian and right sided diaphragmatic pain or the details of the gastroenterologist I saw at the time who ruled out Ibs or gastro causes so that explains why he never liased with him. He never wrote the month I collapsed and then tried to tell everyone I collapsed in the summer in his correspondence. I won’t even go into the scan fiasco with the nhs scan reported endometriomas that he said were not there. I have complained about my care under the gynae consultant and asked for no further correspondence to go to the gynae consultant and now find that he is being updated despite my written request for this not to happen. My lawyer received a letter directly from my gynae consultant saying I am struggling significantly with my disease yet he refused to discuss my prognosis at any point and never even wrote to my GP at any point post op! I had to read a letter from oncology prior to my chemo starting saying I had advanced malignancy and deal with it on my own. When I sat in the oncologists office for an hour and read the riot act on how not to treat a patient I was treated with kid gloves. Now that I have asked a lawyer to collect my records I feel I am being avoided. I have not had any guidance about returning to work with a low neutrophil count. So I have returned with advice from my infection control lead but not seeing patients until I have another blood test taken. I am on avastin 3 weekly and was told I would see the onc for review every second treatment. He seems to have disappeared .
Am I losing my marbles or is this wrong? Thank god for mindfulness and cbd tablets.
Written by
ShazD
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I love the comprehensive post you have written and wish I had pushedon through in the face of adversity when I complained about my original GP and the practice who told me they couldn’t pursue a complaint unless I could tell them the name of the receptionist who gave me the results over the phone I believed them!
I think you are absolutely right to push for accountability here. It doesn’t matter which sector you work in its all pressure and there are failings everywhere but that’s also an excuse they use.
I read something about the NHS in the 1950’s the other day. It said there wasn’t enough money, resources or doctors. Funny enoug so did the one in the 1970’s. In the 1990’s I was freelancing about the NHS and wrote about someone who spent 18 hours in a&e with their child holding dressings on their wound as there was nobody available to stitch them up
So I consider their excuses as safe for them and holding no water in real terms
You’ve really been through the mill, it’s so frustrating when people blame ‘the system’ instead of taking ownership of their own failings. I thought the whole point to the patient history was that anybody could read the notes and have a full documented history and picture to work from. I can’t start to imagine the number of continuation sheets I’ve put into patient notes in readiness for doctors and nurses to complete. I know records are becoming increasingly paperless but the records require full completion regardless of the recording method, nobody should blame the system to cover up their own ineptitude’s.
It’s unacceptable to simply try to fob you off with the contact details of the ombudsman, that’s just a delaying tactic and an attempt to pass the buck, don’t they realise the time they will be required to spend answering the ombudsman’s questions, which we all know they have to do by law?. If their record keeping had been accurate and correct at the initial point of contact all this unnecessary trauma to you could have been avoided and lots of time saved thus relieving some of the strain on the NHS albeit a small relief. It’s particularly frustrating when there are so many digital ways to enable easy recording of information these days.
We know that many doctors still fail to correctly diagnose our cancer until it has already advanced, but given your ascites, your abdominal issues, your medical knowledge and your family history you would have thought it appropriate to at least carry out relevant tests and scans in order to rule out any possible malignancy? Maybe that’s a too simplistic view?
I hope you are able to get some answers and that the medics involved learn from their mistakes and shortcomings, we are all only human but there are protocols put in place to obviate circumstances like these occurring and yours is an example of what can happen when the guidelines aren’t followed as required.
Their excuses do not, as Lily says, hold water. Good luck with your return to work, I hope you get some guidance and help from your managers to facilitate a safe one for you and your patients.
Keep as well as you possibly can be and keep us up to date on proceedings ❤️Xx Jane
What a horrendous litany of miss opportunities to act as true and honest physicians.
Just amazing! And makes my blood boil to read all theses officious and wrongheaded pronouncements.
I was so lucky to be living in little old Bath, where the ER doctor took one look at my bloated abdomen and knew, even before the blood test and ultrasound, what was up.
I was told that sadly, I did have cancer and was sent up for a CT scan immediately to determine the extent, and hospitalised for the next ten days, for draining the ascites and then the CT guided Biopsy to determine the kind of cancer I had.
During that time I was visited by the Gyne/Oncology team, my new CNS nurse, who has been wonderful and indespemsible, the MacMillan team, and had plenty of time to research my situation and prepare my family for what was to come.
My care has been excellent, but I know I have been lucky so far. Just hope my luck continues.
I hope your care improves. I would be lost without the help from my CNS.
This is so difficult for you I have to confess my private general surgeon who had to be going to give me a colostomy said to my private gp, when my o.c had been just diagnosed (by a/e) 'we got that one wrong, John'. As a result I haven't complained as I believe they have both learnt from it. The NHS radiologists who mis interpreted ultrasound scans have been much more defensive and I don't believe protocols have changed...laywers said they were almost certainly negligent but probably time scales were such that it probably wouldn't have made any difference.
I was not after money anyway but do want others to benefit from my experience...if am well enough will continue to pusue....good luck with the ombudsman....Chris xxx
Having worked for the NHS for thirty years I find it personally offensive that anyone can argue that the incompetent and neglectful clinical practice you suffered can be excused with this management speak. What about all the staff who face the exact same pressures but provide informed, safe and compassionate quality care every single day?
I am fuming. How dare this arrogant consultant use such tactics to try to get you to go away. Smoke and mirrors, shifting the blame, lies and then patronizing you! He is a treasure!
There is never an excuse for bad practice. No one makes you work there or forces you to take a wage. If you cannot do the job leave.
The consultant said that everyone was leaving the nhs because it was so bad! Then said his mother had died of ovarian cancer so he was sorry for me but loads of other cancers were misdiagnosed and pancreatic cancer was missed more than ovarian. I guess that was meant to make me feel better. When I asked why I wasn’t weighed after stating I had a 5 kg weight loss he said ‘ oh we only weigh children not adults’. I am past being angry. I thought I had heard and seen it all in my career as a nurse but obviously not!
What a post. I am so glad that at least you know what you are doing. I have also had several instances where my records have negated what the medical team have said. Mentioning that I have a NHS email address that they can contact me on always seems to make them sit up and treat me with more respect.
I can certainly see why your other half accompanies you.
As has been said- don’t let the buggars grind you down.
Please let us know how you get on.
Best wishes
Fay
Hi ShazD.
I think you are not losing your marbles and to be honest the repeated explanation of busy departments and pressure and failings and the general systematic failure of the NHS is not an excuse any patient wants to hear.
It is using a wider problem to deflect from individual and department failings.
What I find is, that being employed by the NHS myself and like yourself we have probably experienced busy difficult working conditions.
But the processes happen and basic info taken as to why your there, and then your prioritised based on those presenting systems by nurse practitioners who may bring you to the attention of a Dr. if they feel it is needed.
It is all subjective to the opinions and experience of those staff.
When you then get seen, the standard investigations are done and if they are busy and perhaps you tell them you have a little clinical experience, and they can not find anything, they give the standard follow up as recommended under Nice and the CCGs and CQCs and the Trust policies.
Mistakes do happen, human error occurs, sorry is the only word they can say.
In your case however the mistake to state routine not urgent ultrasound is the key.
But even an urgent referral takes two weeks, then the report up to a week or 10 days. Then the consultants have to see the results and then you are seen and told that your referred to the specialist team who deals with your condition.
The whole process can take up to 6-12 weeks depending again on priority.
But for the person receiving the news they have cancer and knowing that all this discomfort you have been feeling, and all the private consultations you have had, have not really noted significant history or because they were tired they made a mistake stating routine instead of urgent, may all have been a contributing factor to your final stage 3 diagnosis.
Gynaecology cancers we here are common, and are for most part treatable.
But I think this is the problem. the word common, the matter of fact attitude that maybe they are trying to present to help you not worry and show these are common cancers, does not help when your told you have cancer. Because then you only remember that and back track to find a solution to how this happened.
It does not matter how positive you are or how much lovely support you have from family all you think about is Stage 3 could have been stage 1 had they acted sooner or LISTENED and ACTED.
My experience has been mixed, some great staff but not so good. A consultant who also works in the private sector who when presented with, after my hysterectomy was diagnosed, symptoms of intermittent bleeding, which under NICE 2012 guidelines needs an urgent two week referral to gynaecology, gave me a 4 week appointment to see him next. I then saw a training DR. not him who appeared to know nothing about me.
The biopsy the consultant suggested was needed, when I finally got to see this consultant at that appointment he avoided doing it, telling me he felt it was not needed.
After pushing it took another 7 weeks to get a biopsy after first presenting 12 weeks previously.
When he finally took it he told me it looked fine?
I was told a week later by my GP I had stage 1 cancer. Had I just took his word and waited till April 16 for my planned surgery I would imagine the stage 1 would have progressed and the ovarian cancer found after my hysterectomy also.
You trust them because they are classed as consultants and you think they are being monitored by audits and others to ensure they are working correctly. But you are the person who is more likely to know how your body is working or not.
I am sure if my complaint is up held I will have similar issues, but you know what, take it to the GMC, they need to know when Dr.s make mistakes. Tell Mr Hunt, tell your MP and maybe then the management systems will present them as case studies and own up to them.
I would rather a trust had a Good rating and was honest about it's failing than try to hide them or through there PR process try to dismiss them as failings because of the wider problems in the NHS.
The fact is everyone is under pressure in all working environments not just the NHS. But where are the 6 Cs now?
Care, Compassion, Communication, Competence, Courage and Commitment. Maybe these need revisiting and promoting again to remind us all who work in it why the NHS is important and why as healers we want to work in it.
You are amazing and have given me the drive to push my own complaint.
I am not doing it to gain anything other than the respect I did not get from the consultant who was supposed to be caring for me and who when he made a mistake tried to make me feel I was the problem not him.
Keep your humour and with your hubby and family by your side you will beat whatever comes next.
The best bit was when the consultant told me I was lucky I did not have pancreatic cancer as that was missed more often and was more deadly! Some people really know how to cheer a girl up. As I said ‘ I thought I had heard and seen it all’.
Thank you for you supportive advice.
What a tale of aggravated individual ineptitude.
Everything has been and continues to be done by government and shark companies to weaken the NHS.
In a funny way, it's reassuring there can be similar issues in the private sector. How could there not, given the same staff migrate between the two?
Given all of this, it is remarkable how many of us have largely straightforward and positive experiences, even when everyone is under pressure.
You're quite right to pursue inadequate communications, diagnostics, care etc etc. If we don't the pressure to improve won't be there. All of these things are key to improving the cancer stats in this country. How dare they treat you like that.
I am really glad you are pursuing this...it takes a lot of energy! Your husband sounds supportive (& funny!). Sometimes black humour has to be used. On the serious side, may you have very good treatment from now on. Hope return to work goes well. Linda (former nurse/midwife).
P.S. It is at the busiest times that we were extra careful to fully document, as you will know.
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Hi everyone - meeting my oncologist today
Meet Barnie!!
New to this Site & attended first Ovarian Cancer Patient day.
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