Tough day

I have a really had a tough day today. I see a neurologist as I have issues with my nervous system. I waited like 16 months for this appointment and hospital picked me up at like 8 am to take me and the journey took 2hrs 20 mins and I was finding it so difficult in the car. Arrived at the hospital to the floor and be told I had been taken to the wrong hospital. It was an error in the system it was neither our mistakes. I went back to get patient transport talking to my dad and I was now basically crying on the phone. I could be waiting over 1hrs 30 mins for another 2hrs 20 home with no appointment. My nerves were so bad and lost control uttering everything and I am moderate for sensory level 2. Basically I felt I needed to go on the floor and ground myself for proprioceptive feedback.

 I couldn't do in the hospital. I needed the transport but I had to exit with my health and go on the train as I was couldn't wait. Now I cannot move my spine has gone.

My question is you have sensory issues and you need to ground yourself and your outside what you can you do, people were looking at me taking up three seats on the train lying down. Surely there has got to be some better way.

Parents Reply
  • you must I warn you though you will have very barrier put up just stick with it as you have been treated appallingly .I think they should arrange either for more local treatment even if the NHS  pays for you to go to a private hospital or they should, transport you in comfort and maybe pay for you to stay in a hotel.

    I get so angry when I hear things like this please do not give up

Children
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