"Progressive life threatening condition - no one..."
About: Royal Sussex County Hospital Royal Sussex County Hospital Brighton BN2 5BE
I have a problem with my ears and throat which started around a year ago involve softening of the cartilage. Such conditions can apparently end in a fairly swift death for some people.
The failures started with my GP who implied it was all psychological. The progressive deterioration of my ears and throat proved otherwise. I was finally referred some time later and only after successive visits to my GP and have since had a terrible experience with Sussex MSK who I believe gave me misleading information leading to me going to the back of the waiting list, and who I believe have been evasive about my questions around this mistake. I've been trying to get a straight answer for weeks and when I speak to someone they usually say something like the managers are in a meeting and promise someone will call me back, but this never seems to happen.
I have also had poor experiences with ENT at both Princess Royal and Brighton Hospital, with excruciatingly painful and uncaring treatment at the former, and poor communication at the latter. There is something really wrong with my throat but because this apparently cannot be seen on an MRI my protestations that there is something really wrong seem to count for nothing. Since the start of this not a single person has physically felt my windpipe, and if they had it would be obvious that the shape of the cartilage does not feel normal, as it is obvious to me that it feels different.
I have had one brief appointment for rheumatology at Goring Hall hospital during which the consultant said he would prefer to see me at his NHS clinic at Worthing Hospital, which I agreed to. Since then my appointment at Worthing Hospital has been cancelled and I now have no appointment date. I am not blaming this consultant as this was the best experience I've had with Sussex NHS so far, but since I now have no appointment date and no indication when I might be seen, it's pretty bad.
All the time this has been going on my ears and throat continue to deteriorate. And despite numerous efforts on my part to get help from my GP for the interim period while I wait to see a consultant for any kind of substantive treatment - the wait for which is now approaching 6 months - my GP has been unable to provide any medication to help forestall the permanent damage clearly being done to the cartilage in my body. I question the worth of a GP practice that can only treat minor conditions and otherwise acts merely as a gatekeeper to the real services of value in the NHS, and even in this minor task I believe my GP has failed.
I get visibly worse by the day and apart from very occasional expressions of sympathy, it very much seems like no one in the NHS cares.