hello, my rheumatology department is crumbling, unable to cope and quite honestly I am giving up on endless phone calls and lame excuses, for the past couple of years, whenever a three monthly appointment has been made, they routinely cancel six weeks before, making it a six monthly appointment, I have pointed this out to the nurse before and she has said its often due to people being on holiday, apparently they give six weeks notice and off they go, I do air conditioning and have to barter to find a slot that doesn't interfere with colleagues or work schedules.
I had a ritix infusion 2nd one on the 10th may, my next appointment was due on the 22nd july, I was told they usually like to see you 8 weeks after but it was agreed the 22nd july was ok.
yesterday they cancelled this appointment too 22nd oct, for the second time, the original date being 22 april
I spent 25 minuets getting through to app. dept. to be redirected to a no. that wasn't manned, a machine rattled off a new no. which I missed, due to lack of readiness, oh well, ill ring rheu. dept. another answer machine saying due to staff shortages ring your GP.
I thought, ill pop in for a blood sample on the way home today and whilst waiting to go in I had a chat with the receptionist, he checked for an earlier appt. and said the earliest time was Oct.
He then said try the nurses office, so I knocked and a passing lady said nobody is there, the nurse leaves early on a friiday.
I have decided to slowly reduce my pred. and hopefully reach a point where I can eventually stop, in the meantime ill keep on getting a monthly blood sample done, luckily I've got a stash of blood forms and if any problems arise ill see my GP.
I have watched the rheu. dept. diminish over the years, its at the point of collapse, I will go to the annual health meeting in july and try to get some answers, something needs to be done, I fear its a reflection of recent changes to the nhs but who knows, our rheu. dept. has been saying they have staff shortages for a long time and nothing changes.
totally bewildered.
steve

hi steve, this is the same all over,i use my gp all the time due to cancelled rhumy appts,i have been cancelled 3 times this year and trying to get a nurse is like finding nemo,so after all the swearing and getting uptight I turn to my gp as first port of call and he is a saint,i don't want to go to a hospital further away as my kids have to get time off work to take me and I know from the one time I did go I was there all day(5hrs)and 1.25hr each way drive,just to be told see your own consultant if any changes I didn't have any changes in the first place, good luck,dorothy

Hi Steve,

That`s a really bad state of affairs, and you may have to consider going elsewhere for better treatment. These drugs we are on need rather more careful monitoring than what you are getting.

I changed hospitals a few years ago, for various reasons, but primarily because there was never anyone there on the end of a telephone if there was a problem. This was after I had been put on humira. My GP is marvellous, and said I deserved better, and was willing to refer me elsewhere. Now I travel further, but it was the best thing I ever did, as I have complete confidence in all my rheumy team. If you get in touch with the NRAS helpline they will help you too.

Kathleen x