I finally had my NHS Rheumatologist appointment on Monday. Being a very organised woman I took all of the reports from the blood tests & X Rays done by the private Rheumatologist as well as the letters outlining his findings, which he sent after he had received the reults. I had been told categorically by the Royal Berks Hospital that the Nuffield would be able to access the actual X Rays. I thought, erroneously it would seem, that hospitals & consultants could communicate important information about patients. Not unreasonably, I also thought it would expedite the whole transfer back to the NHS.
How wrong can you be. Seemingly the NHS doesn't do logical communication. I had to have all the blood tests & the X Rays done again. This seems a complete waste of time, money & resources to me. What can the reasoning be? Don't consultants trust eachother?
The upshot for me was completely unexpected & devastating. Having got to the point where I thought finally, after all these years, someone had a definitive diagnosis & an appropriate course of treatment would follow, significantly improving my quality of life, my world turned. Again.
The NHS Rheumatologist said that although I have the gene which indicates Ankylosing Spondilitis there are 7% of people with the gene who don't have the condition. In my case there is something apart from the fused bones in the spine that should show on the X Rays, but doesn't. It's deja vue - like being told that there are 5% of people who don't respond to the pain med's I was taking & which didn't work.
Hopefully the CT scan will clarify things so I can move forward. I asked if the Royal Berks would send the results to the Nuffield. No. Apparently I can ring a number in a weeks time & ask for a CD which I can then take to the Nuffield.
You really couldn't make it up! Why can't hospitals, consultants & GP's share patient information quickly and effectively in this technological / digital age? The wheels grind so slowly they are almost coming off. In the meantime the patient has to be assertive & pro active to make sure that information is shared. It isn't that easy when you aren't feeling well.
Patients rely on the professionals to be just that, but the system lets them down because it's groaning under it's own cumbersomeness.
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