I moved to the UK a year ago, and am having some questions about my treatment here.
I was diagnosed with rheumatoid arthritis more than ten years ago (I'm 41 now) , and have been receiving fairly aggressive treatment for about four of those. When I arrived in the UK I had been receiving treatment from an American/Canadian arthritis clinic four three years and was on 25mg methotrexate injections weekly and 2g if sulfasalazine daily, along with 5mg folate daily.
When I got here I found a GP and asked for a referral to a rheumatologist. After a long delay I was given an appointment at the local hospital (Royal Preston)'s rheumatology clinic. I met the rheumatologist for around ten minutes, half of which time he spent complaining at me that he had not seen the referral from the GP. I have all my treatment records from my previous clinic, and I showed him those. He did the basic examination, asked some questions, and used the 1-10 sliding scale pain chart. I said 6 to 7 on the chart. I also told him that I'd been having considerable pain in my right hand and hip, and he said he would arrange for steroid injections.
At the end of the appointment, I had to ask him for a prescription for my medication, and he said that he didn't give prescriptions, but agreed to do so as a special arrangement. I couldn't get him to explain where I would otherwise get the medication (throughout all of this he was very rude, brusque, and couldn't sit still - I actually thought he might be on some kind of amphetamine, it was so bad). He did give me a prescription for methotraxate, and told me to take it to the hospital pharmacy. I was told to get the sulfasalazine from my GP.
I got the methotrexate a week later, in pre-loaded syringes, without needles. I had to go to the rheumatology clinic to get needles, and the nurse was really surprised, but handed me a few needles from their own supply (thick needles for taking blood samples, not fine injection needles - she didn't have any of those). My GP was completely surprised that he was expected to provide the prescription for sulfasalazine, but agreed, again, counter, apparently to standard practice. He also told me that I could get the folate from the pharmacy without a prescription.
The pharmacist tells me that I absolutely need a prescription for folate, but that I only need to take it weekly (I was taking it daily).
I am now getting the methotrexate monthly from the hospital, and having monthly blood tests (although nobody seems to read them, my Hb level has been below twelve for a year, and below ten for the last three months). I have to go to the clinic and beg the nurses for needles each month (literally, there is no system for dispensing needles that I can see - I have to hang out in the corridor and wait for a nurse to pass and ask them). I have to see my GP each month for sulfasalazine, and for folate.
I did have the steroid injections, at the hospital. I received a letter from the rheumatology clinic, and was expecting a routine follow up, but I was given three steroid injections (I had been told by the nurses that steroid injections were not done at Royal Preston, but that I would need to travel to another site for them, which is why I was not expecting them).
I have not seen the rheumatologist for a year. My treatment has not been revised for two years (since the clinic simply continued the regime I had been on prior), this despite my telling the doctor a year ago that my pain was 6 or 7 on a scale of 1 to 10. I did have x-rays done a year ago, but have not seen them, or discussed the results with anyone, and I do not believe I have had rheumatoid factor or anti-nuclear factor blood tests in that time, either.
Is it really normal that each month I would need to see four different medical practitioners (blood clinic nurse, GP, rheumatology nurse for needles, and hospital pharmacist) just to maintain the treatment regime I'm on, but that I would not see a rheumatologist or have any opportunity to discuss my treatment at all? I have tried to make an appointment to see the rheumatologist, but have been told I need to go back through the process of seeing a GP and asking for a referral, and waiting another ten weeks. I have not done this, at least in part because I am ambivalent about seeing the same rheumatologist as before.
Every time I speak to someone from the rheumatology clinic I am given the impression that I am somehow doing things wrong, that I am inconveniencing them, and trying to game the system in some way. When I speak to my GP he seems as baffled and frustrated by all of this as I am, but he cannot do anything, or change my treatment in any way.
So, is this normal? Should I complain to the local trust? Should I try to get my treatment moved to another region? I do get the impression that I am not the only person who is finding this difficult - the hospital pharmacist and the phlebotimists have both let slip that they frequently have issues with requests from the rheumatology clinic, things going wrong, patients confused. Am I missing something, is there maybe another kind of person between the GP, who cannot prescribe RA treatments, and the rheumatologist who is completely unavailable, that I should be speaking to?
I'm sorry this is so long, but I am really frsutrated (and in pain), and am not used to being this confused and disoriented (and I speak English fluently and have three university degrees - I hate to imagine what all of this is like for people who have language or other difficulties).