"A mixed experience"

I was admitted for a procedure to help alleviate persistent and severe abdominal pain and nausea that was exacerbated by eating salty/fatty foods.

 

I felt that the nursing care I received, in general, was chaotic and low quality:

* On the second day, when a porter arrived to take me to the theatre, I hadn’t been labelled, the checklist hadn’t been completed, and when I got to the anaesthetic room, I was on the wrong bed and had the wrong size of cannula. (This was all dealt with calmly by the GA team.)

* After the GA, while still in the theatre, nurses hurt my arm/hand where the cannulas were inserted by catching them on a blanket and pulling (these cannulas never worked again). They also managed to remove some skin along with one of the sticky patches for the heart monitor.

* On the ward, I felt that the timing was haywire. I was wakened up through the night unnecessarily to be given medicine, and I had to remind the nurses during the day to give me medicine and do other things that the doctor in the morning had told me that they would do. This made me feel uncomfortable and insecure. For example, 2 hours after I was due to have IV antibiotics, I asked the nurse for them. She told me that I hadn’t been given them because I had not been returned to the ward when they were due … but I had been returned to the ward before they were due. Another example, it was 24 hours after I told a nurse initially that I couldn’t pee that I got a bladder scan that confirmed that I couldn’t pee, and a doctor was called to deal with it. (In the meantime, I’d wet the bed, and a nurse had changed it, but the cause of me wetting the bed had not been dealt with, and I was worried that it might be related to another medical issue that I have.)

* Sometimes, when I asked a nurse to do something for me, I felt that they felt I should be doing more to help myself. For example, more than two hours after I’d returned to the ward from the theatre, when they were causing me pain by trying to use a cannula that wasn’t working, the room started swinging and I said I thought I was going to faint. The nurse told me ‘Put on your oxygen mask, you shouldn’t have taken it off.’ And that was the first time I realised I even had an oxygen mask. (I became reluctant to ask the nurses for help, and instead accepted help with my meal from a patient who noticed my difficulties. The patient later told me that she had diarrhoea, but fortunately I didn’t get it!)

* Unhygienic things happened on the ward: my table had not been cleared before I arrived and when I asked for water some hours after I arrived, still they didn’t clear or clean the table. Once, a nurse knocked the lid off my water jug onto the floor, picked it up and put it back onto the jug. (I didn’t like this, but I didn’t say anything.)

 

* Even though the food I eat is important in helping me manage my pain, and even though I’d written an extensive list of things I could eat (which were on the menus and which they told me would be no problem), on the third day they continued to offer me salty/fatty meals with no alternative, and no yoghurt or bananas. (On the third day, I refused their food, and since I wasn’t able to get food by myself, I asked a visitor of another patient on the ward to buy me food.)

* The only time that I saw the nurse in charge of the ward was when they went with me to the theatre. One nurse who attended me mostly during the daytime was either not able to deal with my issues or (perhaps more likely) they did not understand my English well enough to deal with them. Another nurse during the daytime made me feel like I was being a nuisance when I asked them to help me do something. I did not feel safe or cared for by the nurses on day shift on the ward.

I felt that the care from the junior doctors was variable:

* They always listened to me.

* Sometimes they acted quickly and made good decisions. For example, one young doctor changed me to medication I was familiar with after I asked to see a doctor one evening.

* Sometimes I wished that they would have discussed things with me beforehand. For example, I would have preferred to have discussed pain medication with the doctor who checked me in before I ended up in terrible pain waiting for a doctor to come and see me.

* Some practice seemed unconnected or inconvenient. For example, I wonder if I could have had a cannula inserted on the first evening that would have been big enough for both antibiotics through the night and the GA the following day. I wonder if i could have been wakened up fewer times to be given medicine: I was wakened up from 0300-0330 to be given an antibiotic that I needed once every 24-hours. I was also wakened at midnight for medicine due at 10pm (because I'd been given the same medicine 2 hours late during the day), and then wakened again at 5am for this medicine (after a 5-hour instead of 8-hour gap between doses).

* Sometimes the younger doctors told me things that either I knew immediately were not right, or else, turned out in the end not to be right. For example, a doctor insisted that 2 cannulas were working fine, and consequently different nurses repeatedly tried to use them, causing me to yelp in pain at the time, and later to have significant pain and bruising around three-quarters of my arm.

* One young doctor examined me physically without giving me a reason for their examination. I suspected that they did this because I have an unusual disease. I would have preferred for them to have been up front about why they examined me. I would have agreed to it, and felt more comfortable about it, if they had said they just wanted the experience.

Some people went out of their way to care for me:

* The doctor who did the procedure came to see me before and afterwards. Beforehand, he explained everything carefully, including the risks and his hopes for benefit from the procedure, as well as some other things about my disease. He told me that the biggest risk was that he would not be able to do what he wanted to do, and afterwards, I was touched by how delighted he was with his handiwork! I appreciated the candour of both this doctor, and the senior doctor that I saw on the ward round the following day, in telling me what they didn’t know in relation to my disease. I was also touched by their concern for me, and their hope that they would have done something that would have made a positive difference to my quality of life.

* One nurse, on night shift, was a star. She found me crying in bed the night after the procedure and gave me more painkillers (which I hadn’t known beforehand that I could have). Later, she gave me more painkillers, and after midnight, when I still couldn’t sleep because of pain, she offered me a hot drink, and then another one, and more painkillers until I was much more comfortable. She made the decision to remove the two painful cannulas in my lower arm, and when one didn’t bleed at all, she told me that it had been painful because it had already been knocked out of my vein. She was both capable and caring, and I was so thankful for her.