Just had an appointment cancelled for the second time ,athe least they gave us a days notice this time the last time it was the day before .are they waiting until he is hospitalised before they do anything .m was supposed to get a camera down the back of his nose to film his throat and then the salt team can see which way to go from there we have been waiting for 2 months and each time he gets an appointment he deteriorates and gets agitated it's not fair .

6 Replies

  • No it's not fair. Just like so many other things about PSP. However the worst thing is the way patients are treated. That frankly is a disgrace. I am assuming you live in the UK? If so ring the SALT team and DEMAND another appointment asap and tell them you will report them to the CQC if they (a) try to fob you off any more (b) cancel or postpone another appointment. Sadly threats seem to work! It shouldn' t be like this but it is.

    Can I ask why your husband was to have a tube down his throat? My husband had a test but he had to drink something...well various things and it was highlighted on an x-ray what happened when he swallowed.

    What tests have others had? I always assumed people had the same tests? It seems a bit weird if people are given different tests maybe depending on where they live?

    Marie x

  • Thank you for responding Marie I have calmed down today, we are going to cornwall mon to Friday on a coach next week so I will wait till we get back ,unfortunatly the girl on the end ofor the phone took the brunt mick has had the swallowing test .he has had a few bad choking episodes that's why they are filming his throat the tube will not go down his throat just take pictures I am assuming he will have to swallow while it is there .will let you know what happens x


  • Thank you Jillian I'm beginning to realize this psp isn't fair ,how are you doing.x x

  • So annoying g when you gear yourself up for something because as we all know its not easy getting someone with psp to an appointment anyway. At one time they wanted to do this on Gerry but I refused on his behalf as I felt it was too invasive and dangerous because of his choking and as we knew what was going on anyway I didn't see the point because it wasn't as if they could cure him. Good luck next time. Marie

  • Thank you duffers he is refusing to go now anyway so we shall see,my daughter in law is a nurse so is trying to persuade him to go x

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