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New in UK with MS: where to start?

Hello and thank you very much for this really useful forum.

I moved to London with my girlfriend for job a month ago, she is affected by MS, diagnosed 5 months ago in Italy. They said she would need a second follow-up MR after 6 months from the date of diagnosis to decide when and how starting the therapy. So in 1 month she would need to do a new MR.

Now we are a little bit lost here in London because we do not know very well the UK Health Service, so I really would appreciate if someone could give us some information about where to go/ask to start a way of follow-up and treatment.

Should we go to a private clinic or public assistance is enough? Do I have to ask our GP at first, to be followed by a consultant, or are we supposed to contact a neurologist physician directly?

Thank you very much in advance!

Nicola

Hi Nicola,

You will need to approach the GP first, and take it from there.

In theory, this is true even if you wanted to go privately (self-funded outside the NHS), as the GP would still need to write you the referral or introduction letter. Most private consultants in the UK do work for the NHS as well, so it is likely the GP would know of them, and something about their reputation, even if it is not your choice to see them on the NHS.

I believe all EU citizens are automatically covered by the NHS, and in theory the cost is recovered from the home country (but not from the patients as individuals, so you should not face an unexpected bill back home),

If you can afford to go privately, and would like to, the chief advantage is speed. As you are very likely to see the exact same consultant in a private clinic that you would have done on the NHS anyway, there is not likely to be any REAL difference in clinical approach or standard of care. Typically, a private clinic has nicer, more modern surroundings and nicer coffee, and you get to spend a bit longer with the consultant, but there won’t be any major difference in how they treat MS.

Most people in the UK who are diagnosed privately (I’m one of them) move back to the NHS for ongoing care and management anyway - partly because the expense of staying private after diagnosis is usually NOT met by insurance companies, and can be prohibitive, but partly because there is no real advantage in staying private after you know what the problem is. There is not likely to be any knowledge or treatment available privately that is not available on the NHS - because it is mostly the same neurologists!

One thing I am not certain about is whether the NHS can accept a diagnosis from an Italian hospital, or whether they will want to run their own tests - which would essentially mean starting again. I have heard of cases where a foreign diagnosis was not accepted. This may be partly to cover themselves - if they accept a foreign diagnosis which later turns out to be wrong, they could be open to claims of negligence for not checking.

Usually, in the UK, there is not a second six-month scan to talk about treatment. IF the MS has been active enough (usually at least two relapses in two years) a diagnosed person would be considered for treatment straight away.

I had a six-month scan before diagnosis, but was to help with diagnosis, not to decide yes or no for treatment. I have never had another scan after diagnosis, and this is not normal here, although it is sometimes used to check if a treatment is working, or if the disease is active enough to justify a more powerful treatment.

Tina

x

hi nicola

welcome to the forum and to the uk.

first you will both need to register with a gp and a dentist if you want the NHS to pay for it.

the gp will be able to refer you to the relevant people.

find out where the nearest ms therapy centre is and go along.

these places are charitable organisations who do their own fundraising. they are fab places with lots going on. (i’m a big fan)

you can go along to as her partner and can also access therapies there.

sorry but i don’t know any neurologists in london but i’m sure someone will be along soon who does.

carole x

Thank you very much Tina and Carole, your posts are really precious for me, you were very kind to write such a detailed overview!

Nicola

x

Welcome to the UK. As others have said, the NHS General Practitioner (GP) is your route in to specialist hospital services (for other than emergencies). You and your partner need to register with a local GP.

Here is a link to some NHS info on the role of the GP. http://www.nhs.uk/choiceintheNHS/Yourchoices/GPchoice/Documents/rcgp_iyp_full_booklet_web_version.pdf

Alison

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