This could turn into a rant, so be warned.
So what is it like going to the doctor or specialist, I would hazard a guess that most people feel okay when they leave, but when they start thinking about their appointment, doubts start to creep in. Did they answer all of your questions? did they give you time to ask all of your questions? is there an action plan for the future (be it short, medium or long term)? Did they really understand, or listen to what you were saying?
I could go on and on with these questions. For the everyday GP it must be hard, they have so much to learn and they end up being a “Jack of all trades, but a Master of none”, unless they go on to specialise. We expect so much from them and are often disappointed when they don’t come up to scratch. This is where the specialist comes in (someone who works as an “*ologist” in something or other). The appointment arrives and we think, “now we are going to get somewhere”………………………..computer says No! and our survey said “uh uuhh”! get the picture?
For lupusites, expecting the best is often a dream, unfortunately, we cannot see a “Lupusologist” as there is no such animal, we have to see 3 or more other *ologists who all have differing views on what treatment we should receive, oh and do they talk to each other……..not a chance, they are normally in totally differing locations.
Lupus is not a single item disease, that conforms to the norm, it is many diseases rolled together under the one umbrella, and it is very easy for doctors and *ologists to say “oh it is just the lupus, keep taking the meds and see me in 3 months (or more)”
Lupus sufferers and their carers often fall into the “too hard” basket, and are shuffled around from pillar to post as no-one wants to be lumbered with them. A typical example is my wife, she may have an issue that requires an ambulance and a trip to emergency at the local district hospital, they are usually pretty good but sometimes it is too hard for them, so we get sent to the regional hospital. Now I am sure this hospital has an alert against our name, as the usual response is a sign of the cross and a transfer to a large hospital in the city, which is 3 hours away. So as a carer I now have to look forward to 11 hour days getting up to the city and back, oh and did I mention (get the violins out) I am waiting on a hip replacement and am in pain a lot of the time, but I love my wolf (oops sorry sweetheart, I meant wife) and will put up with this to see her.
So the next question is….do they really care…….No, I sometimes think that the Hippocratic oath went out the window with the invention of technology, social media and hospital administrators. I was in the waiting room to see my GP the other day and could hear the receptionists bemoaning the fact that on one day they had a large amount of patients and all the doctors met their targets, yet the next day they had half as many but failed to meet their targets. They simply could not understand this…….hey that is because you are receptionists and the first day could have been simple – take 2 aspirin and see me if it gets worse – whereas the next day could have been complex appointments requiring a bit of thought.
I think I better stop there, see you soon