Hello,
I despaired of waiting times to see what would have been a non-MS neurologist, simply for him to then refer me to the MS clinic (which he has said he would do).
So I booked to see a private MS neurologist in my local area. A big expense, but I was so desperate to see someone who knew their stuff.
This was a disaster. I took a lot of time to make sure he had access to all my scans/results before the appointment, as well as details of my medical history to date and contact details for my non-MS neuro. I said in my email when booking that I was hoping for a confirmation of diagnosis/treatment.
When I turned up, he had not looked at any of my results, just had a blank sheet in front of him. He seemed to think I was someone else. He made irrelevant comments about his own health, and at one point asked me whether I was scared of flying (??). The whole thing was surreal. My list of questions proved irrelevant - he couldn’t answer because he hadn’t seen my scans. He made some comments about MS which seem pretty weird to me given what I have read elsewhere. His whole attitude came across as unprofessional.
I’m not going to name the person here, I know it would just get deleted. But I wanted to know if anyone else has had this experience - neuro has not looked at any previous scans?!
Hi Leonora
I’m surprised this sort of incompetence doesn’t get reported more frequently. A neuro is a neuro. Being private means they derive their diary and income from sources other than the NHS but being private is no guarantee them being better than, or indeed as good as, the neuros working for the NHS.
You definitely need to complain. Firstly report your dissatisfaction to the neuro whom you met - he needs to know that you’re on to him. Ask for a repeat appointment FoC and then, if necessary, report your dissatisfaction to the clinic he works for or the agency / brokerage that feeds him clients. Top level, go to the GMC, but don’t get fobbed off by anyone - what you describe was sheer incompetence and complacency.
Graeme
Yes - the trouble is, I’d be concerned about the impact it would have on my future treatment. If I do end up having to get local treatment in the longer term, this neuro/his immediate colleagues are likely to be in charge. My immediate plan is to go elsewhere, but I’m not sure how viable that is for on-going care, access to ms nurses etc.
More odd things he said:
- Things like brain atrophy, cognitive problems are linked to inflammation. So if you’re not getting new lesions, then the other things won’t be so bad. This surprised me - my understanding is that there is progression independent of lesions, due to things like brain atrophy.
- He seemed to think that being in my 40s meant I had a positive prognosis. I’d read that “older” patients (>40) may get fewer relapses, but faster progression. Again, he hadn’t even seen my scans.
- He had no idea why I was worried about things like my future capacity for employment. Seemed to think it would not be affected. Again, that would be great, but seems a bit optimistic to say the least.
- Recommendation of copaxone as firstline treatment if my scans do not show new lesions. I thought copaxone was fairly outdated. Also he did not even discuss the side-effects or the risk/benefit ratio, or whether it would suit my lifestyle. Just said it was that or “monitoring”.
You definitely need a second opinion. As you suggest, he seems to have slipped behind latest developments and methodology