I have just been effectively diagnosed with CIS/MS, by a 3-line letter, from a general neurologist who is not up-to-date with my symptoms (and therefore the urgency of the situation).
I am in a total state of shock, part of me just can’t take it in. I have cancelled work for the rest of today. My whole world is falling to pieces.
At this stage I am willing to pay to go private as I am simply desperate for help and not making any progress at local hosptial (Salford Royal). Any recommendations would be welcome (willing to travel).
I’ve contacted a couple of people so far, one local and one in London - neither had appointments within a month. I was surprised - thought if I went private I’d get seen much quicker. Is this normal?
Also, I’m having problems getting any information off Salford (where I am normally supposed to be seen). They are saying I have to do a data access request to get access to my records, which may take a month.
If any of you have gone private, how did you get your medical records, scans etc. to the neurologist?
Thanks! And good luck to all of you in this new world I am joining.
Hi, I can’t offer much advice on private healthcare wait times but here is a link to various MS Neuro names. You’ll need to check them on LinkedIn to see if/where they have a private clinic, quite a lot of them do.
I am sorry that it’s all taking so long. The NHS route is the only one for getting access to disease-modifying treatments. So I’m not sure what would be the benefit of going private this far down the line. Many of us, me included, went private initially to get the process started, but you are well beyond that point now. Do you have a formal dx? What is the next step as you understand it - a follow-up consultation, presumably?
Thanks to both for your replies. I had a diagnosis of RIS with positive oligoclonal bands, but I now also have the symptoms to go with it. So I think that must mean CIS/MS. The only reason I haven’t got further than that is the endless delays. My GP has asked them to see me, but says she can’t guarantee it. Otherwise I would just be waiting for my next MRI.
So in a way, it is partly about getting things moving. But I suppose I also thought it would help at this stage to get a second opinion to be absolutely sure about diagnosis, get a bit more detail on what they have found.
I’d also like as many sources of advice on DMTs as possible. I presume what I get offered will depend on the NHS, but I’m not sure to what extent the NHS England treatment algorithm is “binding” or whether neurologists have some discretion. And I presume that a recommendation letter might strengthen my case for getting some action on DMTs. I’ve read all the stuff about “flipping the pyramid” and early intervention, so I’m potentially up for hitting it hard with something high efficacy, but worried they won’t offer this as firstline.
The other reason for going private is to put my many questions to someone who will really take the time to go through it with me.
My neurologist to date has been so-so, but he’s not an MS specialist. I’d like to see someone who is.
I really do think the delays that I and others on this site are experiencing with diagnosis are very unfortunate. I shared Dominic Shadbolt’s views on the way they would not treat a cancer patient like this… https://dominicshadbolt.com/
For us too, fast action is medically important.
Perhaps it is better for patients of London hospitals like Barts…I’ve even had thoughts of trying to move into a different catchment area but central London is a tad pricey!
Maybe find out who your local MS specialist practising in your NHS area is, find out whether he/she does private work and get a referral? A private consult sounds like a good investment, just as you say. I completely share your views on drugs, by the way.
At least the private referral should give you an insight into how things work locally, although ideally your GP should know about that and maybe does. A good GP is a great blessing.
If you can get hold of your NHS test results before your private consult, that would likely make your investment better value for money.
Thanks. I’ve just started the process of trying to extract my medical records from Salford Royal. Apparently they have up to a month to deal with this, but I’m trying to get all the scans, passwords, LP results etc. so that I have them to show around. In fact there are fewer private neurologists locally than I thought.
Given that there seems to be something of a consensus on the need for starting promptly with a high efficacy treatment - patient willing - I wonder why the NHS England guidelines on DMTs are so conservative?
They seem to have been published in 2018, are they just out of date? Who writes these things? It’s rather important if we are bound by them.
Hello, not sure if you have now made progress with this but i wanted to share my experience. I was diagnosed with CIS with evidence of probable MS but awaiting lumbar puncture to confirm and my local trust has such a long wait for this I decided to see a private neurologist as thought it wouldnt hurt getting a second opinion anyway. I saw Dr Wallace Brownlee at Queens Square in London, he is the MS clinical lead at the Trust there and one of the top in the field of MS. I booked to see him through Top Doctors which i have to be honest was mega sceptical of as i got an appointment for the following week and seemed too good to be true…however they wanted no money up front so all i had to lose was a trip to London! Anyway the entire thing was legitimate and i have to say the best £300 i have ever spent. Dr Brownlee was fantastic! I found seeing an actual MS specialist so helpful as my local neurologist wasn’t, and Dr Brownlee really took the time to review my scans etc and we have a plan moving forward. He also discussed my options for DMTs should i be diagnosed after the lumbar puncture results. I got access to my MRIs within 24hrs of requesting at my hospital however Dr Brownleee was also able to request access ahead of our appointment and had all my tests etc in front of him when i arrived. I hope this helps x
If you’re shopping around for a private neurologist - might be worth just ringing and asking if they have access to NHS records.
I went private and he was an NHS consultant and was able to get my records there and then.
Thanks so much for these useful comments. I’ve had a go at making an appointment with Dr Brownlee, will see how that goes. And it’s really helpful to know that neurologists who also work on the NHS might be able to get records directly! I don’t know whether they can do that if they are out of area, but it does sound promising.