What’s the best approach to finding care?
I’m in the UK with ordinary GP’s who aren’t really interested. It’s about giving what they can that’s as cheap as possible. I am supposed to be under the care of a neurologist- I’ve seen him once in 2019 then had a phone call in 2020 following an MRI- nothing since!
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Oh, GPs are no good! You need a good neurologist who knows what’s what! Can you find someone else? Can you afford private?
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Like @Jools I’m U.K. based and here unfortunately even the vast majority of neurologists/neuro-otologists, NHS or private, don’t offer anything by way of condition management. They only expect to see VM patients the once. It’s very much a case of diagnose and begone from sight I’m afraid. GPs are expected to manage day to day management and as @Jools says they don’t. In most cases I think it’s as much that they lack the expertise as they are not interested but either way it’s not much help. We are no very well served I’m afraid.
Gosh that’s really not giving you much patient care. How do they determine what is working and what isn’t? GP’s are not the people to manage such a specialised condition. My GP is only ever a gate way to specialists.
At my worst, it was once every 4 weeks at the neuro - and I booked in in between those times when I needed to. Now it’s every 6 months… but I called last week and got In the next day. Always willing to try whatever!
Why do you think that is? Is UK changing at all? Can you see overseas doctors?
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Interesting points but Drifting way of topic. My fault entirely.
Perhaps I should have emigrated years ago when I was young. You are very lucky.
Hmm … my UK experience was a little different.
The private clinic was definitely reviewing my condition regularly, sometimes just over email.
Every time I went in I was asked to fill in a long questionnaire to describe my condition and symptoms.
Within reason, you should be able to see your private consultant as much as you like, you just have to find the spondoolies to pay for it, and it isn’t cheap so you aren’t going to want to see them more than you absolutely need to.
Towards the end of the worst phase of my condition (lasting in total about 3 years) I had to switch to the NHS because I was made redundant and lost my insurance.
I got a GP referral and had something like 6 monthly Oto-neurology checkups at Royal Nose & Throat in London on NHS, but by second meeting I was recovered enough to be discharged at that second checkup. Had I not been so much better by then I’m sure they would have modified my treatment or told me to be patient and reviewed me again months later. I was told to get my GP to re-refer if it got bad again.
Of course you don’t get the same level of focus as if you go private, for sure. I was seeing my private consultant more regularly iirc, but given it was free, I was grateful for the NHS option.
I think that’s probably down to the “post code lottery” it took almost two years and several GP’s for me to be referred to a neurologist - I saw the neurologist in the autumn of 2019, was referred for an MRI which I had in December 2019 which came back clear and then due to Covid didn’t get another appointment - I have had one conversation with him since which was when I struggled with the propranolol he had suggested I try as a preventative, everything else has been done via GP’s - and I haven’t seen the same one twice.
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I didn’t go via a GP initially for the private clinic.
I literally emailed the consultant directly (after researching the experts in this space online) and asked if she would see me privately. She said yes.
She referred me on at one point to see an ENT surgeon, who passed me back to her care.
On top of that I saw 2 other private consultants via the same technique for alternate opinions. No GP involved. I paid for those myself as I suspected my insurance company would not have paid for them unless formally referred by the first. I saw one of them twice, he was very helpful in giving me hope.
Being able to get to London definitely helps, I’m sure. It’s packed with private practices.
Obviously going via your GP is a necessity to get through the NHS system, appreciated.
However, one other technique you can use is to see a consultant privately first, then politely ask them to see you on the NHS for followup. I was offered this recently by the consultant I saw for my stomach issues, but never needed to follow up as I got better. The downside is the appointment will be much further in the future, but it’s an option.
COVID messed up a lot, I was lucky this all happened way before.
Would you be prepared to have an international consultation? I know that Dr. Shin Beh in the US offers them. Here is a link: Contact Us
Which is great if you can afford it and access it. Not everyone can. and yes covid didnt help in lots of ways.
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Given how life changing this condition was, losing ÂŁ160 was the least of my worries at the time.
If they help you to get back on your feet and work, you can easily make that up.
I’d have borrowed £10k to be cured! (but that was my feeling at the time … you don’t need to spend anywhere near that, you just need to learn the ropes to manage it yourself, but that takes time and you understandably need handholding to begin with)
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Absolutely. What holds for the Metropolis is so very different from life out in the sticks. I’ve never understood how the - er - “National” - Health Service can vary so much region to region. Something to do with regional area health boards I suppose but nonetheless so frustrating.
I wonder how much the fact that you were very pro-active helped? For me, being pro-active, for example contacting different specialists, seeking help from other professionals, helped a lot, as opposed to waiting for something to happen and being fatalistic about the situation. Being proactive gave me back some of the power that was taken from me because of VM.
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I suppose proactive is easy when you can afford to be. I didn’t sit back. I saw my GPs regularly and asked to see someone- but had to go on a long waiting list.
If it’s vestibular, I’d recommend an oto-neurologist specifically, but I guess neurologist better than nothing.
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For me, it was doing my own research. In fact, this very forum led me to my diagnosis. I saw many GP’s, and ophthalmologist, physiotherapists etc but nobody knew what the problem was. Finally I saw a neurologist who knew exactly what was wrong. Sadly, I’d wasted nearly 18 months at that point feeling as sick as a dog with no treatment.
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Same here although about 12 months for me - its a long time to be $%#@'d up and not know why.
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Yes, it was truly horrific. I don’t know how I got through it, but I did, and I’m mostly all better now. Hope you are doing well
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Glad to hear you’re better. What treatments helped you? After years of misdiagnosis i finally got the right one then had to try 4 meds before finding one that worked, which was wonderful while it lasted bit had to come off the med due to side effects and now i am going through a really really bad time. Barely eating because of nausea. Stuck in bed all day everyday for the past month. It feels neverending. Feel pretty helpless at the moment. Desperately want to feel like i did with the previous med so i hope i can get back there again and hopefully it’ll last this time. I’ve already had vm for 12 years now and want to move on with my life. Luckily i have been under a headache specialist for the past 3 years, so i’m seeing a great guy but unfortunately the appointments are 6 months apart. And the hospital i have to go to isn’t local which means travelling for the better part of an hour just to get there.
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