Not so good experiences

Here are some examples of experience that were difficult for children and young people.

 

I have a very serious illness which has made me disabled.  The worst experience I’ve had with the NHS has got to be the time I needed a major operation.   A famous hospital was going to do it but they refused to listen to my family and me.

 

 They let people without disabilities go to a surgical ward after their ops but they wouldn’t let me.  They also said there was a very high chance of me needing a permanent breathing tube in my throat which was the last thing I wanted.  It became obvious that they weren’t really listening to what I wanted.

 

 They knew I would have to go to Intensive Care after the op.  The shorter the time I spent after the operation in Intensive Care Unit, the higher the chance was of me needing the tube.  They were only going to let me stay there for a couple of days.  

 

 Despite the fact that these docs were the ones who told me to avoid these wards in the first place, they were then going to transfer me to a respiratory ward where they have people who have illnesses which could be fatal to me.

 

  My mum thought that they weren’t going to listen to me and that they would put the tube in anyway, without waiting long enough to see if I could do without it, because that was easier for them.

 

Another thing that made this experience terrible was that the specialist doc who had known my family for many years and had told us to contact him if we ever needed help, wouldn’t help me and took the hospital’s side.  He was supposed to STOP me dying not HELP me die!

 

If I could say one thing to this doctor and the hospital it would be “You think you know everything, but you don’t!”.

My parents and other docs, our social worker and the nurses were scared I wasn’t going to get the op in time and they all wrote to the hospital but they wouldn’t listen to them either so my parents looked for other hospitals that were willing to listen to us.

 

We found two other hospitals straight away who would never have put us in that position and said that the way we wanted it to be done was they way they always did it anyway.

We chose one hospital who said they would do it as soon as possible and would let me stay in ICU as long as I needed to be there! We were all OVERJOYED to hear this and this brings me to my best experience.  See the continuation of this story in the “Best Experiences” page……..