This morning I got a snotty letter from the consultant. It said my GP has written to them to express my concerns and frustrations regarding the lack of treatment I have received. It said they noted I had asked for a second opinion at Bristol and what did I hope to gain from that. It was unfortunate that the waiting list for an ultrasound was four months but after that they would look at if I needed any treatment with appropriate drugs and this had been explained to me. Perhaps my doctor could refer me to a pain management clinic as I obviously wast dealing with pain very well.
So just to be clear what actually happened in clinic was I was told a score of 5 did not meet the requirement for biologics and I was allergic to dmards so I had no treatment options left. They are now trying to make out I've no active disease because my bloods don't show inflammation however all the joints on my hands are swollen, I can't bend my knees because of the fluid on them and neither can I bend my elbows all symptoms I was told last September clearly demonstrated active disease requiring treatment yet nothing has changed since last September other than I've got worse but suddenly they are saying oh no that disease we said is active no we are now saying we can't see because we've completely failed you. I am in the most appalling pain at the moment and the pain management reference was a slap in the face. I'm just appalled at the standard of RA treatment in some places
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Gretchy
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would get all your medical records via SAR subject access request from your hospital I think there's a charge though. It's disgusting how we are treated sometimes. I went to my Endocrinologist a few years ago because of my osteoporosis as I hadn't been seen for a couple of years. after waiting .... weeks to be to be told I had never seen him before even though I have a letter saying he discharged me as missed an appointment, he discharged me once more only to receive an appointment a year later to see an endocrinologist who was referring me to see the first doctor 👨⚕️
You could complain to PALS which is patient advisory liason service. Tell them you are confused and would like there help.I had to resort to this and my consultant has been jumping through hoops for me since
I know it sounds crazy, but if your DAS score is below 5.1 the wretched ..NICE regulation is that you don't qualify for Biologics. So even if your doctor made an application it would be refused.
Maybe if you manage to see another rheumatologist, although he/she won't be able to alter blood test results it may be your joint condition may be graded differently to get you over the magic number.
Maybe you could ask for a steroid injection whilst you sort things out. If you are one of the lucky ones it could tide you over for a few months.
I rec’d appalling medical treatment as well and am sero-positive with extremely high bloodwork markers. My own ignorance tripped me up as I expected I was paying for good medical treatment. How wrong!
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