"Care quality, diet, fluid balance."

I have had oesophageal dysmotility for almost a year, and have been unable to take anything more than thin liquids. I recently became dehydrated due to lack of ability to swallow more than 600/700 ml of fluid a day. I was admitted to DGRI Ward 7 and the board behind the bed was written up for a puree diet. I asked for this to be changed but was told it couldn't be changed and didn't matter as I was compos mentus. I transferred to ward 10 a couple of days later. I was not given a soft foods menu, despite requests, until three days after that. The only food I was told I could order was vegetable consommé which I had to write on the ordinary menu.

I was admitted mainly to be rehydrated at the request of my GP. It took from midday until after 5 to get a drip started .Things carried on for three days until the drip ran out. The doctor said they would prescribe fluids for the next 24 hrs and refer me to the SALT team and dieticians. As the fluids didn't arrive, and nobody came to see me, I repeatedly enquired about the fluids. A whole shift passed with various reasons offered for the lack of drip. When the night staff came on I continued to try. The Health care assistant told me to catch the senior nurse in the dark blue, not an easy task since I have mobility problems, and they didn't come in to our room.

Later I asked them again and they showed me my fluid balance chart, pointing out I'd had plenty of liquid. The chart was filled in with amounts which I hadn't had. The most noticeable being 600ml of water which had been in my jug. When my husband checked the charts at lunchtime next day, when I finally got a drip up, he found that 600 ml had been written in every day even though I had not drunk any. Also other fluid intake had been marked down without me having had it, just from what had been delivered. Nobody asked what I had actually had at any point. This information was being taken at face value by various people who were checking on my blood chemistry and kidney function, and explained comments about how well I was doing at getting things down, and how I might get home without a naso-gastric tube, which had puzzled me at the time.

I would like to say that individual members of staff were very helpful, particularly one person who wrote up the problems in my notes and helped make some sense of it. They also arranged for the nurse in charge to come and talk to us.

I had also asked for suppositories, since I have problems due to my lack of intake and spinal cord strictures I was offered a glove and KY jelly, which isn't easily usable with my spinal problems.

I'm still working on getting a 60mg dose of liquid codeine as oppose to a single tablets worth.

I was in this ward early in the year, and did not have good experiences then, but came in hopeful that this time would be better, (My speech and mobility are better and I can communicate well). I don't think anyone deliberately tries to be difficult, but that inefficient habitual behaviours lead to patient misery. 

My fellow patients and I have been helping an elderly lady with her food, and making sure she can get drinks placed out of her reach.

This is terribly long and complicated, my condition is a bit that way too, but us patients need to be listened to and consulted. Box after box is ticked with no conversations, from skin health to Fluid Balance. 

And I'm no one's darling!

I know nursing is hard, Doctor's make mistakes and no one's perfect. We need a way of dealing with things and listening to patients.