Anybody using charing cross london neurology department?
I have had a pretty rough time the last few months/year or so not only with relapses but pretty much a lack of support from them. Having had a friend over who has ms too at the weekend was told my care team should be doing a lot more for me especially if i think i had a relapse. so far there was been sweet bugger all and I feel my symptoms have got a lot worse. Strength and cognative. I actually spoke to them about being transferred to my local heathcare trust (frimley) and was told the only way was if they discharged me then i had to get my gp to then refer me to their neurologists not just transfer me. I get one 15 minute phone call with them a year and feel pretty underloved. Meanwhile, my condition deteriorates. I want to change to my local trust but from what they were saying it sounds like a massive faff and I don't want to go through the process of being diagnosed again, lumber punches and potentially not getting my tecfidera while its all happening.
@hi-im-steve Hi, I jumped ship just before COVID went on the rampage. I asked my GP to swap my nuero to another hospital which specialises with ms. The only thing that went a little pear shaped was my Tec run out for a couple of weeks, had a dodgy belly when I started them again but didn't last long. Had a few MRIs and phone calls to tell me I'm not getting any worse. So stick with that your on, as it's still working for you. Every body is different so what works for some might not for others. The grass is always greener on the other side of the fence as the old saying goes. My new ms nurse gets back to me via text on the same day (my speech is terrible)
i thought as much, the straw that broke the camels back was having been at charing cross for 5 or so years when i initially moved there my local ms nurse discharged me, then 5 years later got an ms nurse appointment there. obviously a lot of questions mount up over 5 years and after being told my next appointment would be in a year I was then told i have 2 minutes left if there are any other questions. I know they are ver subscribed but quite frankly the care the last few years has been a bit naff and now i do really need their help im not really getting it. Even if i send an email it takes a week to get back and i have to travel to london every three months to collect my tec.