I am desperate to find somebody who has experience of autoimmune rheumatic diseases, who really understand the chronic clinical framework.
I had found one doctor very good at this: for some years things went on smoothly, until administrative changes or just his different agenda and priorities messed up totally my care. For about one year I did not receive the diagnosis of a comorbidity. I had to go privately and discover that with a very cheap medication and in few days I would sort out awful pain and risk of further complications.
After that episode, I decided to change practice. I did not feel comfortable anymore going back there. But things went even worse. Within the new surgery the first GP that saw me insisted to change a repeated prescription. I had to file a yellow card for such very idiot error because I had an allergic reaction. The second GP denied other prescriptions that I have on my list with the consequence I ended up in A&E. I was referred to a hospital clinic for further assessment. It is really tiring to deal with these incompetent doctors! They may be junior but ... isn't that a reason more to listen to patients and trust what they say, instead of expecting the other way around? I am feeling constantly dismissed, if not even intentionally bullied.
I manage my condition very well but any little issue I have (and I have many, to be honest) requires to be considered in the context of autoimmunity and allergies, for which I cannot always rely on self-care. If I need to speak with a doctor I expect a minimal degree of understanding of rheumatic diseases that change many assumption for non specific symptoms.
Also referral to specialists for the purpose of monitoring a number of risks associated with autoimmunity have been mismanaged with appalling waste of resources: it makes no sense to refer me for a wrong issue or to the wrong clinic. My new GP (that saw me just once in six months) told me I have health anxiety that I absolutely do not have. He ordered tons of blood test (who is anxious?) totally useless, instead of studying my condition and trying to understand from my record how to deal with a certain issue. There are clinical recommendations for my condition so why not follow the advice? I had to go to another private GP. In conclusion I feel I do have health needs unrecognised so I want to change GP surgery again.
Does anybody have recommendations of local surgeries registering new patients with the NHS that have doctors with some expertise in autoimmune rheumatic diseases?
Marbeya