This pretty much sums up most MAV recovery. May it continue. Good luck.
Just found this thread. I had an appointment with Dr S at Medway yesterday and he didn’t mention that his clinic was closing - mind you I was in and out in about 4 minutes without much time to ask all the questions I wanted . I am tempted to go and see him again as a private patient just so I have time to have a proper conversation . It took me longer to find a parking space! I was given another appointment in September 2019 so maybe the clinic isn’t closing yet? Fingers crossed, but if not I shall opt to go private I think.
Then thank goodness there is mveritgo.org! Ask away!
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2 posts were split to a new topic: Private discussion
I thought to maintain a private practice in the UK you have to commit a proportion of your time to NHS?
Therefore surely he will find a way around this because he has to?
I had some vague recollection on those lines too but only last evening on local TV there was a private consultant saying he’d ‘done over 2 years in the NHS’, very much past tense. From context I’d say he only sees private patients now. So don’t know the answer really. Helen
I’m new here, and I’m struggling so badly at the moment. I’ve been Dr Surethiran’s patient since 2013 when I was at the lowest point. I’ve been having bad relapses since last year and I’m not coping very well. My partner is not very supportive and not showing sympathy which makes me feel even 100 times worse. The only person I rely on to is Dr Surenthiran and is clinic might be closing!!! Who do I turn to
Sorry to hearing you are struggling. Not familiar with your story. Suspect you haven’t ‘introduced’ yourself fully yet maybe. MAV tends to be long and rather tortuous road. Have a read of my story as an example if you must, but things do improve eventually though often it doesn’t seem so at the moment. I wouldn’t worry about Dr S’s clinic closing, the NHS will have to offer patients an alternative, and besides has it even been confirmed as true yet anyway. It may never happen. Providing you’ve got a diagnosis, failing all else, with all the info on the internet, and support from fellow sufferers on mvertigo.org you can get through this on your own, if you have to. That’s what I‘ve been doing for years, all I’ve ever had are two one off neurologist consultations about MAV that were of assistance to me. Before that I’d seen couple of ENT, done 6 months VRT, and originally because of comorbid condition seen two or three eye specialists - none of whom were any help at all. It’s most helpful with MAV to have supportive partner so that’s something to work on. Get him involved, reading about MAV. As we look so healthy, it being Invisible Illness mostly, others cannot comprehend it often. You need to find something in it your partner can relate to then he’ll realise what you are going through. If you continue to join in the forum conversation you’ll find plenty of support here from people who understand and to who you wouldn’t have to explain yourself. We’ve all been there. Helen
Alot of people have found the appended helpful for introducing partners and their families to the concept of MAV.
it’s all about the funding. maybe Medway decided they didn’t want to lose him. or maybe he has found a new home for his NHS practice. time will tell.
i have done this a couple of times when i had specific questions, especially re medication, and if i was unsure about changing/increasing doses.
Dr. S has told me that his NHS clinic in Medway is closing in March and that he is looking for a new home for his team and that his NHS patients would be transferred to the new place so not to worry. My next review is in June so I’ll not have an appointment or destination until things are settled.
I do hope he finds somewhere new. March seems a tight deadline, but perhaps there are prospects in view. I wanted to ask if there was anything patients could do to help/lobby on his behalf but it was a rushed phone call appointment with this info popped in right at the end.
Write to their Member of Parliament about the only option, or the relevant area Health Authority for the clinic’s current location, or both but I suspect it’s already fait accompli. Helen
Oh dear that is a great shame. I was hoping that as he didn’t say anything about it to me when I went in October he wasn’t being moved out! Fingers crossed it is somewhere local!
I hope so too. I know that Dr. S is “not the second coming” and that he has no magic wand and just uses the usual round of drugs but I have faith he’ll stick with me, muddling along until something or a combination of meds offers decent relief. In the past, as soon as I was even marginally a bit better I was discharged from ENT or Migraine clinic care and left to get on with things despite assurances at the outset that consultants would stick with me and get me better. (I usually saw these consultants privately and in the NHS)
Dr. S has not offered to get me better or cure me but to work on a long term plan towards a better quality of life It gave me faith in him that he wasn’t promising a short or easy path to relief.
It really must be helpful to have somebody who is interested enough to be prepared to stick with you. Neither of the specialists I saw were interested, despite their adverts which stated otherwise and which were what drew me to them in the first place, and I saw both privately. They were only interested in giving a diagnosis and prompt payment. The neuro-otologist actually said he couldn’t help me further so much as he regretted it he wouldn’t be able to take any more money from me. Honest, at least. I assume specialists think GPs have the knowledge and resources to manage MAV. Some do I suppose but personally I‘ve yet to meet one. It’s a sorry state of affairs really in these modern times but that’s just how it is I guess, Success with MAV, however you measure it, can depend on the individual you end up with, and their enthusiasm for their subject. @jojo65 has had success, at last and she says she has a young female neurologist who promises not to abandon her. Helen
Yes - that is what I like about Dr S. He is in it for the long term!
I was quite lucky with Dr S as when I saw him as a private patient it was me that had to chase him for the bill! Jan xx
The neuro-otologist I saw wanted paying in advance. The second, migraine specialist neurologist, sent a bill offering 14 days terms, and the very same day it arrived I had two quite abusive messages on my ansa machine (she obviously uses a debt collecting agency) saying payment was overdue! And more calls next day. I was annoyed because my husband had already posted cheque by return before I’d checked the ansa machine or she would have waited the full 14 days on principle! Helen
Wow - that sounds very aggressive. What happened to ‘customer service’ ? Very off-putting! Jan x