"No one seems to care"

I have had problems swallowing for a year now and started off on a level 5 diet after having a a new vocal cord fitted, mine had disappeared.  What I didn’t know was that it would change my life forever, what I ate, and I just had to get on with it and find out what machines to buy and how to make my meals a soft level 5!  Before going into hospital last week  I had an endoscopy  and a neck scan but nothing showed up, but I still have a lump in my throat which I have had for three months and eating is getting harder,  choked on stewed apple and custard, which I had blended,  that was the  reason I was admitted.

I stayed for 5 days in ward 51.  I was pleased to move up to a ward from A&E and told I would be  would be getting a camera down my throat.  The next day it was changed to barium meal.   A dietician came to see me regarding what I could eat and set out a daily menu, and put me down to a level 3 diet.  He was very good and kind.  

I went outside on the second day as the weather was beautiful and I felt lonely, the staff were not very friendly. I was loudly told when I came back into my room that I wasn’t allowed out of my room as I was in an infectious disease ward! I was bewildered, why was in this ward??? I was worried about this as I have COPD and Asthma. Why was I being spoken to like this!

The next morning I asked another staff member if I should be wearing a mask, and they asked why, so I told them what I had been told the day before.  They said no, this is a respiratory ward not an infectious disease ward. I didn’t know who to believe and no further info was given. The staff I spoke to gave one answer to all my questions and left my room each time.

The third day I was in I was told I would be going home today. I said What! Nothing had been done and no one spoke to me about what was happening regarding tests or anything. I did say in exasperation why, nothing has been done, why am I going home?  But the staff member just left the room.  I went to find another staff member and told them I had just been told I am going home, but they didn't believe me, I felt they made me out to be a liar.  And again left the room and wouldn't discuss anything further. This happened every day, only a few words answered and no explanations made.

No tests were done in the five days I was in hospital, I was told I will get seen in the community and that I would be going home, this I was told on the 5th day.  I went outside each day, it was very lonely being in a single room with no one to talk to and no visitors and no chats with the staff. 

It was an awful experience for me from day one.  I know they are busy and normally do a wonderful job but this time in this hospital was the worst experience I have ever had in all my years.  I was ready to discharge myself on my 4th day but my niece talked me out of it.  

I am now down to a level 3 diet, order by the dietician, lovely person.  Lost 2 and 1/2 stone. My gp then told me my dietician discharged me three weeks previously because my weight was being maintained but they hadn’t told me that when I saw them. But it didn’t matter anyway, I had only seen them a couple of times and got no help preparing meals. I ended up having to ask for more info as I always cooked for myself, but I am unable to do that now because my health has deteriorated greatly. No one seems to care.  

How did we get here with our hospitals and community based workers? I am down to a really unhealthy weight and been told I will be treated in the community now, but when and with whom! It hasn’t happened in over a year so I don’t know how much longer I will have to wait again for help. I am so exhausted fighting for help, I feel degraded and, disregarded and  dismissed and lost all confidence in myself and have become housebound over the last 3 months.  Frightened to go out and meet people,  I used to go to 3 different clubs each week before all this happened and now I am shut away.  Like I don’t matter!  I am in isolation where I live.  I am sorry this was all supposed to be about my hospital stay, but I am just so upset and lonely living on my own carrying this burden and getting nowhere.