I agree up to a point, and disagree up to a point.
I do think (judging by the accounts we read here) that a lot of neuros have an atrocious “bedside manner” - or complete lack of a “bedside manner”. Or of manners full stop.
However, I do NOT think it’s their fault diagnosis takes a long time. I think this is due to the difficulty of diagnosis, and to the stringency of the evidential criteria that must be met.
One area where they may be at fault (mine was, although he’s nice), is not explaining in layman’s terms what these criteria are, and WHY it can take a long time to amass the evidence.
I had the impression mine already knew, on receipt of the initial MRI results, that it was MS, so I couldn’t understand his reluctance to commit to a firm diagnosis.
If he had simply explained to me that we had to wait for either another attack OR evidence of fresh activity on MRI, to satisfy the “multiple” definition of MS, I would have understood what he was hanging about for.
But as it was, I couldn’t understand why he seemed to “know” what it was - to the extent of telling me - yet still wouldn’t put it in writing. Because he’d already told me, and I knew they wouldn’t go round telling patients about serious conditions unless it was pretty certain, I spent a long time not being absolutely sure if I’d been diagnosed or not.
If he’d said: “Now my professional experience tells me this is going to be MS, but you’re just going to have to bear with me for a while, while I prove it”, I would have understood why he couldn’t jump straight in with a confirmed diagnosis.
Even my GP, when I asked her, didn’t know (or didn’t explain) that the reason my neuro couldn’t diagnose immediately was that the diagnostic criteria WOULDN’T LET HIM.
This is just not made clear enough, so a lot of patients get the impression there is negligence or deliberate foot-dragging, when in fact, the rules for when someone can be diagnosed are quite strict.
I have exactly the same neuro on the NHS as I formerly had on BUPA. My DMD “consultation” also consisted of two minutes to be told to go away and read about them, and let him know the decision.
But again, I think this is more reasonable once you know the logic. The NICE guidelines expressly say the choice of DMD (or of the first line injectables, anyway) should be left up to the patient. This is because there is no proof any one is more effective than any of the others, so it really is up to the patient which one they feel most happy with.
On that basis, the neuro really shouldn’t be lecturing the patient about which one they “should” choose, as there’s no clinical significance, so it really is up to the patient which one they find most acceptable (or least unacceptable) and which fits best with their lifestyle. Being invited to read about it and choose really isn’t such a dereliction of duty, when it’s supposed to be the patient’s choice, and NOT the neuro’s.
If my neuro had discussed it with me in more detail, I imagine it would still have boiled down to: “Well, they’ve all got pros and cons - do what you think best.”
He could have talked me through all of the individual pros and cons, but I imagine he assessed me as being perfectly capable of reading and understanding them myself - which was true.
So although it seemed a bit abrupt at the time, and indeed, a waste of a journey, I don’t think I was left short of any information I needed.