"Left with negative memories"

About: University College Hospital / Gastrointestinal surgery

(as the patient),

Pre-Assessment: All the various pre-assessment tests and interviews and the interview with the surgeon (Mr A Windsor) were excellent and gave a great deal of confidence to my wife and myself prior to surgery as a result of a rectal tumour.

Day 0: Admission and Operation Day

The admission to surgery and pre-surgery interviews were excellent. As I came round the aura of professionalism and care gave me confidence that I was in good hands and this continued when I was taken into the Critical Care Unit (CCU).

Day 1

My care in the CCU continued to be excellent day and night. I realised that, as I was able to pass wind and that I had virtually no pain, the surgery had been absolutely first rate. I was tested for the effectiveness of the epidural and it seemed to be near 100% effective and I was able to sit in my chair for one hour.

I was taken from the CCU onto a standard ward during the afternoon. On arrival I was still fairly groggy as I was wheeled into this new strange environment. Very shortly after arrival the sister was beside my bed shouting (as it seemed to me) that everything must be tidy, then she tried to fix my epidural onto a mobile stand and on failing to do so and seemed to me to become cross with it and then shouted for another nurse to come and fix it. She also seemed to have some trouble fixing it and there seemed to be a big fuss around me. I found it most disturbing and it would have been even more disturbing had I been of a more sensitive disposition. However, after all the commotion died down I was left without being introduced to anyone and without the nurse call button being left within my reach. I think I was certainly not made to feel at all comfortable particularly psychologically. During that night I needed to use the call button. I called out and the patient diagonally opposite me said I would need to call louder to make myself heard. I tried, unsuccessfully, but then the same patient used his call button. Eventually a nurse came and attended to me.

Day 2

The ward round was at approximately 09.00, the doctors asked how I felt and I said quite good considering. They didn’t look at my wounds or abdomen. A little later I noticed that my abdomen was very swollen and my testicles and penis were both very swollen and becoming more red as time went by. As I had not been warned about this I became concerned. I tried to find out from the nursing staff whether this was serious but nobody could answer. Not until the stoma nurse came round and then subsequently the Enhanced Recovery Nurse that I was told by both of them that it was a normal side effect. (I had been warned about many side effects before the operation but I don’t believe this one.)

I asked for some of the Ensure drinks and informed the assistant nurse and staff nurse that I was on the enhanced recovery programme. However, it seemed to me neither of them knew about either of them. It was not until the night staff came on that someone knew about it and I was able to obtain some Ensure. At this stage I still had the epidural, an arterial blood monitor, an abdominal drain and a catheter. I did not feel like I was encouraged to get out of bed despite the fact that the enhanced recovery programme had that as part of the programme. I did later get myself up and walked around the ward. However, on one occasion I asked for urine bag to be emptied but it did not happen until another shift came on. On another occasion I felt intimidated not to ask as I did not want to encounter what I felt was the unpleasant attitude of some of the immediate staff. This meant I had to carry the bag as there was no facility to attach it on to the mobile epidural stand. On one occasion there was more than 1.5 litres of urine in total and I realised that this weighed more than the “kettle” that I had been warned I should not lift for at least 6 weeks after the operation. The force required to prise the urine bag off the bed frame was also much more than lifting a kettle.

Later I noticed that the abdominal drain seemed to be clogged up and nothing was draining out. I also thought that either my lower wound or my catheter was leaking. (It later turned out that it was the abdominal drain that was leaking directly from the wound site onto them.) I asked the nursing staff to attend to this but no one came.

When my stoma bag was quite full my wife asked if someone could empty it. She was told by the staff nurse that I could empty it myself (I had not been tutored as to how to do this at this stage). My wife said that I had five drip leads dangling loose from my hand and that it was impossible to change the bag without contaminating the ends of them with the excrement. A little later a nurse came and in my opinion very grudgingly, roughly and painfully emptied the bag. In fact I landed up blaming my wife (I think most unfairly) for the pain caused because she had complained about my treatment.

At this stage I feel I had not been given or offered a clean hospital gown (mine was stained with the fluids from the leaking drain), help with, or an offer, as to how I could shave or wash since I came to the ward. My wife asked if that was something that a patient’s family should be doing. After a while a bowl of warm water and a towel was brought.

During the day my stoma bag was emptied for me and a small amount seeped onto my bedding and also seeped through to the bottom sheet. I was made to feel I was being difficult when I asked for it to be changed. It was eventually done after I replied to the nursing assistant’s comment that “It wasn’t much,” by asking if it was alright for me to sleep on it and under it all night.

Later the stoma nurse came and bound up my loose drip leads and helped me empty and change my stoma bag. He also cut off the bulk of the exposed part of my abdominal drain and applied a small stoma type bag over it. Later in the afternoon the drain bag was quite full and I asked if it should be emptied, I was told that it could wait. Later that evening when I lay down the bag burst open and all the contents went over me, my pyjamas and the bedclothes. One of the night staff changed them for me and gave me a clean pair of pyjamas.

In the early hours I read my notes as they had been left on my bed and saw that during the doctor’s round that morning there was an instruction in the Surgical Review section to take my drain out. I note here that it did not actually come out until Day 4 (two full days after the instruction).

Day 3

I emptied my stoma bag but was told off for emptying the contents into the WC, however, I had not been told what the correct procedure was. Later, after asking, I was given two different sets of instructions as to what I should do. One set of instructions was that I should keep it to be inspected and the other that it did not matter and I should flush it away myself.

In the morning the epidural and catheter were taken out and I was put on a morphine drip. This made me very disoriented and unable to concentrate. I was not told that I should move around to help get the bladder operating. I was eventually told this. Later in the day my blood pressure was taken and it was fluctuating considerably. Three different machines were tried and I was told that a manual one would be brought but it did not come. I think I was missed out by the pain control team on their rounds but fortunately a nurse came and realised that I should be taken off the morphine and given alternative analgesics.

I managed to maintain a reasonable frame of mind despite, but not because of, the immediate day nursing staff. In complete contrast a day staff nurse from the same floor came twice and made the beds in the morning, she had a big smile and a friendly manner and after the short periods while she made my bed I felt in considerably better spirits. Generally the night staff were very good. They mostly introduced themselves, acted with kindness and provided a good nursing service cheerfully

My general nursing treatment improved a bit after my wife aske done of the nurses to be a bit kinder to me. Both my wife and myself got the impression that both she and her helper did not want to be there.

Day 4

My abdominal drain out was, at last, taken out.

Day 5

Uneventful, different nursing staff on duty with a different and better attitude and hence better atmosphere.

Day 6

Told I would be discharged and this was conducted efficiently.

I would like to reiterate my thanks for the magnificent core treatment I received, I feel privileged to have been a recipient of it. Whilst this was the most crucial aspect of my treatment, some of the poor nursing care I received did disturb me and upset my family. It is unfortunate that we have been left with those negative memories when all the other aspects of my treatment and outcome have been so positive.

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