Just wondering… if someone is diagnosed with MS, where in the world is the best place to be treated?
I’ve noticed so many comments from pple on the list reporting that their access to MS care is great, while others struggle to get good enough care, so clearly care in the UK differs hugely from place to place. But I read somewhere that the UK lags behind the rest of Europe in treating MS, which made me wonder - where is the best place? And that raises the question - if somewhere is better, how do we access that better treatment?
I don’t know the answer to your question I’m afraid. But what I was going to say is that if you’ve been diagnosed as having ms (in this country) then treatment (for DMD’S) is free - assuming that you qualify for DMD’s being that there is a criteria that needs to be met. It wouldn’t be if you were diagnosed here then went off to another abroad for treatment?
Prescriptions for symptomatic medications aren’t free (unless you qualify for free prescriptions anyway) but there is the route of a prepayment certificate which helps.
If you’re talking about other more radical treatments abroad then in my opinion you would really need to make thorough investigations into research and your chosen clinic etc.
Hmmm. I don’t know the answer to the question “Where in the world…”, but I would hazard a guess at Canada (very high incidence of MS + good health service), although I’ve heard that Scandinavia is really good.
It’s probably more important to make sure that we get the best possible treatment for ourselves wherever we live. In the UK, if you have RRMS, the first thing is to make sure that you see an MS specialist who can prescribe disease modifying drugs. It is a little known fact that not all neurologists can prescribe DMDs. And if someone with MS is seeing a neurologist who can’t prescribe DMDs, they ain’t ever getting themselves a prescription for DMDs, even if they are eligible. So, first step: get on the list of someone who can prescribe DMDs. (Use the “Near me” function on this website to find the name of an MS specialist in your area.)
Next step, in my opinion: know what you are eligible for / know what to ask for / know about MS. Seeing a neuro who can prescribe DMDs doesn’t automatically translate into getting a prescription for DMDs: sometimes we need to ask. Same goes for other meds and treatments. Read the NICE full guidelines for multiple sclerosis CG8 (these are being reviewed, so keep an eye out for the new version). Read Polman et al. Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria. Read the information booklets on here and on the MS Trust. Read the msdecisions website and the Multiple Sclerosis Research blog. Subscribe to the MSRC RSS news feed. If you can, explore PubMed and Science Direct. Research. Learn. (You might not want to do all of this at once!)
Other factors:
Make sure that you have an MS nurse and access to a neurophysio, occupational therapist and other rehab services.
Get a really good GP who will work with you and your MS nurse and won’t insist on letters from your neuro for every little change in med.
Take control. Learn to ask (firmly if necessary).
This all works well assuming that your local PCT are playing ball. If they are one of the ones with a load of extra, unfair, exclusions and criteria, then you might find some things hard and going to court may even be your only option. Let’s hope not!
Not sure this really answers your question. Hope it helps anyway.
At the moment I’m not needing much in the way of specific info - my 17 yr old daughter is in the process of perhaps getting a diagnosis, after 3 yrs of ms type symptoms. I want to be sure that we get the best possible help for her, if the time comes.
Debbie - useful thought about cost of meds… and I suppose more generaly, if I found an excellent neuro on the other side of the country, it wouldn’t be practical to travel constantly.
I don’t want to be one of those sharp elbowed parents the politicians talk about, striving to get the best for my child - but if I need to I will definitly be as sharp elbowed as I have to be when it comes to her health.
If your daughter is diagnosed with ms then she should be referred to an ms specialist if her current one isn’t - not all neurologists are. I read somewhere that we are short on neurologists in this country - but I can’t remember where I read it or even when!
The actual waiting for answers of some kind is truly horrible but until something concrete shows up the neuro’s hands are pretty much tied. Hopefully in your daughters case answers will be forthcoming.
I’m one of the lucky ones in that I have an ms specialist and an ms nurse both at my local hospital - and they’re great, but I’m also aware that this isn’t always the case.