Week in and week out, sometimes even daily, this and other boards and blogs associated with auto-immune conditions feature posts from sufferers and their carers about the problems of getting a decent diagnosis of their particular disorder. So many of us seem to be in this position that we could be forgiven for thinking that the rheumatology section of the NHS is in crisis. Just why do so many of us spend years seeing so-called specialists and yet get no further forward with either an accurate diagnosis or effective treatment? So much so that many of us pretty much give up and go away preferring to suffer in silence than spend half of our lives waiting for our regular three monthly rheumatology appointment to come through nine months late as usual. I really don’t know why my rheumatologist wastes her time telling me that she will see me in three months when I know from past experience it will be the best part of a year until I am allotted a slot and then I will have to turn up and wait for at least an hour and a half past the stated time to get in and see her as she is “running late”.
In my own case it seems that the ‘experts’ are agreed that I have an auto-immune problem but at different times I have been told that it is Lupus, Psoriatic Arthritis or Undifferentiated Connective Tissue Disorder plus Sjogrens and a touch of Raynauds on the side! If cancer or diabetes services ran like this there would be public outrage on a massive scale so why do we have to put up with it?
Now I know there will be those who spout the usual lack of resources argument but if the billions of pounds which have been hosed at the NHS over the last decade can’t even get me an appointment on time it’s not surprising that I ended up paying for hydrotherapy out of my own pocket. I also know that it is not easy diagnosing AI issues. There are well over eighty conditions that fall into our bracket ranging from MS to ‘bog-standard’ rheumatoid arthritis and even more 'bog-standard' osteoarthritis and most of the tests and scans are pretty non-specific so I do have a degree of sympathy with the rheumatology consultant whose list I end up on. But, come on, is the best you can do really to ask me why I stopped taking the methotrexate six months ago when all it did was make me throw up. And, Yes, I did phone the nurse helpline way back then and explain that I was having problems with the medication and, yes, she did say she would sort me out an appointment and so here I am. Six months later and flaring horribly.
At least I have been fortunate enough to have one bright spot in all of this in the shape of my GP. He has been willing to refer me to several hospitals and even to try less conventional treatments like acupuncture and mindfulness meditation to help with pain management but there is only so much he can do. His job is to get me to the relevant specialist and that is where the whole system breaks down and grinds to a halt.
My apologies for the rant. In the end I just want someone to explain why there seem to be so many of us in exactly the same position that we are forced to rely on brilliant boards like this one to get any real understanding of how we feel and practical advice on how to cope.