I have to take a deep breath before typing this because I don’t want to appear emotionally blinded by what’s happened. I need some feedback from doctors, nurses, care staff out there who have had experience in renal care in a UK hospital.
Okay, this is what happened…
Hubble and I went to see my mum this evening and found out she had been moved to another ward again without the hospital notifying us. This is the second time it has happened during her current stay in hospital. I can understand if they have policies in place to protect the patient, but surely a woman whose next of kin have requested to be notified of any changes should at least be called? Am I wrong in thinking this? I even left my number on the case file for them to call me. She was moved on Monday night a few hours after we left her in the evening.
Now putting aside the fact that I panicked when I saw someone else in her place in her old ward, we found her placed in a new ward, sitting upright in bed when she is paralysed on the left side, her head leaning heavily to the right due to the fact that she can’t stay awake for long (the side effects of her infection) and the weight of her body leaning onto the same arm that had the fistula and graft. I woke her, only to find she was shivering with her neck and left shoulder exposed. When I tried to help her into a straighter position since there were no nurses about, she cried out in pain and I quickly checked her arm to see if it was in an awkward position. In the past I have come to visit her in hospital and found her paralysed arm put into an uncomfortable position with the hand twisting against her hip at a weird angle. It’s painful to see let alone move.
Anyway, I looked at the arm and the forearm was swollen by the fistula and an angry red. Alarmed, I searched for her bell which was placed on her left side…she’s paralysed on the left! How the hell is she supposed to ring the bell for help. Bear in mind she is semi-conscious and in a confused state too so I guess it wouldn’t matter where her bell is placed. She wouldn’t be able to ring it anyway.
The bell was pressed and we waited, me supporting her head and shoulder to try and take the weight off the arm whilst I waited for someone to come help me move her off it. Minutes later, no-one appeared so I left Hubble with Mum and went to see if I could find a nurse. I found a lady in blue and asked if she could help me. She followed me to Mum and I explained my concerns. By that time another nurse had arrived and was talking to Hubble. I asked them why mum was left in that position and was told she had just been moved to that bed not long before. When I explained that she shouldn’t be leaning on her arm with a fistula, they told me it was a graft that looked infected/inflamed and that it had been like that.
When we visited Mum on Monday at the other ward, her arm had been fine without any swelling and there was no sign of angry reds. I tried to tell them that maybe it was swollen because they had left her leaning on the arm and putting pressure on it. They didn’t look too impressed and said they would fix her. They said they weren’t aware of her fistula and they were not in charge of her care. They had called the nurse who was responsible for her. The nurse in charge of her care came and I went over the things that worried me again, and she told me that Mum was put onto stronger antibiotics and would be going to Oxford on Friday for a day visit to check the graft and fistula as they are still trying to figure out where the infection is coming from. I wondered whether they would have bothered phoning me to tell me this if I hadn’t come to the hospital.
What if I worked far away and wasn’t able to visit nearly everyday. Would she be left sitting on her arm with her head and paralysed arm at odd angles? Am I overthinking things and being unfair?
We asked the nurse to remove the plastic tags on the fistula arm as they had made indents into her skin where the arm was swollen and she said she would, but nothing happened whilst we were there for the next hour and a half. We also had to give the baseline for my mum’s cognitive skills again, even though I had done that in the other ward. Why is this never written down? Again, if I wasn’t there, how would they know that my mum could talk and knew who she was, where she was and could reason things out? I’ve given this information – it should be on the notes for the next set of carers to read. The last thing I asked was for her not to be left upright where she would end up falling onto her arm. The nurse said she would make a note of it. Am I cynical in thinking she didn’t? We asked if the stains on the side of her sheet were blood. She laughed and said it was probably spilled tea. Didn’t the other nurses say she had just been moved to that new bed? Surely if she had, she would have had crisp clean sheets? And if she was given a cup of tea in the time she had been moved, wouldn’t the stain still be wet and not dry?
From Monday night when we saw her on the other ward with caring nurses who did not walk past us like we were scuff marks on the wall, my mum was talking, smiling and responding. The nurse in charge came to give us an update and told us about her day, giving full details of my mum’s condition. She had a slight fever which was being monitored, but there was no sign of swelling on her arm and she as being cared for closely by the staff.
In the two days she has been moved to this new ward, we’ve found her unresponsive, shivering cold (we had to ask the nurse to get her a blanket), her arm swollen and red and her outlook bleaker than before. One of the first nurses I had called over to help us asked me if Mum was capable of telling them if she was cold. I looked at her and said, “well I think it is common sense if you see a patient shivering and muttering she’s cold, she is cold!” I got the same ugly look from before.
Please tell me if I am unfair in thinking the quality of care on this ward is below standard. I’m so upset and to think my mum was showing signs of improvement, it’s distressing to think I have left her in the care of people who could turn the tables on her recovery. What should I do?