Hi,
I found out recently I have MS and am keen to start treatment as soon as possible, with a neurologist who has accepted the guidance to “flip the pyramid” and start with high efficacy DMTs in eligible patients. To me, this is as urgent as access to cancer treatment and I’m not keen to just let it drift.
But my local MS service seems to be struggling to cope. They take months to make progress and seem to think this is ok. I have made an appointment to see someone privately, but that will be a one-off, I presume - as I think treatment has to be on the NHS…?
So my question is: Is anyone’s local neurology service working efficiently, in terms of time-to-appointment/treatment?
I’d also be interested if anyone has experience of treatment in Belgium.
For clarity: are you resident in Belgium or considering going there for treatment?
In UK, when I got a very long lead-time appointment from the MS Consultant in my local trust, I went back to my GP who sought an alternative date from an adjacent trust. Miraculously, the original trust came up with an earlier appointment…
Hi, I live in the UK, but work most of the time in Belgium and could move, though Brexit complicated that a lot. I assume most people on this forum won’t have a clue about Belgium, but added just in case. One thing Belgium does offer is a more liberal policy on euthanasia, which I’d appreciate. But I don’t know what they’re like for MS treatment.
In a way, if I’m not eligible for any treatment, it may not matter. But different countries have different criteria. And I’d like to be linked to a trust that is plugged in to clinical trials etc. Not one that can’t even manage a basic diagnostic appointment…
I lived in Belgium for nearly a decade and had excellent health services & operations.
If you’ve got a mutuelle I would approach a neurology department and see what they can do.
I can recommend the az portaels hospital in vilvoorde as a truly excellent hospital.
I had symptoms back then but wasn’t joining up the dots - wish I’d been diagnosed there as I suspect things would’ve moved a lot more quickly!
Hi,
Don’t know anything about Belgium- but your euthanasia thing did make me smile😉. If they can’t fix it fancy this……lol.
Hope you are not thinking about that though😵💫
In answer to your waiting questions YES, AND YES.
I waited 20 years for a diagnosis, back and forth to neuro. Fast forward 20 years and after a 20 month wait for 1 st appointment saw some neuro generalist why was like ‘ ye whatever- have an MRI. Once he saw all the damage everywhere on mri, I was swiftly referred to a guy who knew what he was talking about. Bingo diagnosis. Since then however……… no response of ms nurses- busy apparently……. Follow up appointment with consultant in a YEAR, new patients initial nurse appointment february 2024!!!
Physio - at least a 14 week waiting list
And on it goes……
The only person that has been helpful and on it ,is the nurse from the DMT drug company- funny that.
GP= text to say sorry to hear………
Chocolate fireguard comes to mind.
But i am ‘self helping’ a lot….
If you have actual, local experience of both healthcare systems, I think you are in as good a position as can be to choose. I know you can’t know what approach either might take to pyramid-flipping, but if one of them to your certain knowledge can’t even manage the bare minimum, who could blame you for wondering whether the other one might be better and surely couldn’t be much worse? Have you tried canvassing opinion on the Belgian equivalent of this forum? Might be worth a try. The grass isn’t always greener etc.