I'm now spending less and less time in the UK, and more and more up in the mountains in France renovating an old house for my old age....And we've now got walls and windows and floors so I'm going have to make a decision soon about waving goodbye to the NHS and my lovely rheumy and settling over here full time. EEek, the idea alone make me anxious... Anyway I decided to pay to have a private consultation with the local Monsieur le Rheumy so I could get a feel for him first, as I'm in a very small place so not much choice. So thought I tell you all how it went.
First off, when I phoned he answered his own phone! And gave me a choice of appointments within days. So a good start. Well today was the day, so off I went armed with my very useful French RA dictionary (NRAS what about an English one?). All very interesting, and never have my joints been examined so thoroughly! I can't actually remember even having to strip off in the UK, except for x rays and so on. He checked all of them, including the jaw, and moved them through the range of movement as well as pressing and prodding. He did my DAS score as well, but says that he included feet as he prefers to look at whole patient, even tho' it's not part of the method normally. So another plus point for him.
I'm on MTX, Sulpha and Hydroxy and his view was that this was a very "English cocktail" that isn't common in France. If MTX doesn't work then they go straight to anti-TNFs rather than messing about with too many DMARDS. He also said that he would never use more than 2g of Sulpha, and I'm on 2.5g. But more positively, his view was that now I'm 3+ years post diagnosis and pretty stable I could be starting to reduce the sulpha & Hydroxy anyway as in his experience my RA is unlikely to get more aggressive now as long as I stay on MTX. And since he had prodded every joint I felt that he did have a good idea what they were like as he's spotted the 4 that hurt me most.
What I was less sure about is that he only does blood tests every six months once people have got used to the drugs. Strange isn't it, I moan like anything about having to have it done every 6 weeks but when someone says 'stop' I feel I'm having something nice taken away from me! And although perfectly friendly, I felt he was used to telling patients what to do rather than discussing and agreeing things which is what my lovely English rheumy does. Probably both approaches end up in the same place, but it's nice to feel part of the decision making. And I didn't like his shirt.
Still no closer to a decision really, as I do really like my English rheumy. But it also only cost me about £40 for a 45 minute consultation, and good to have another view of my RA, so all in all a useful afternoon. Polly
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Bargain consultants fee. and the french have a better approach re medication it would seem?
I really like his approach if that helps. And what he says does seem to make sense. as for settling here or in France- is that really such a hard decision, so my next question is when can I come visit?
I live in Dubai now and have my bloods checked every three months were as in the UK it was every 6 months. The consultant here was very surprised at the low dose of Mtx I was on and had been since the diagnose one year before, she immediately upped my Mtx to 20 mgs a week and I feel so much better for it. I have to say I love the NHS but sometimes time and money come into play. I have also lived in France and the GP there was the one who diagnosed me with RA after just one visit.
I live in Saudi Arabia where I was diagnosed in April after only a couple of appointments. But I'm not keen on the rheumatologist as he also doesn't seem to be used to patients questioning him, especially women! I don't have any problems getting an appointment usually I can see him the same day but even though he is pleasant I'm just not sure whether I trust him yet.
I should have added, I find it extremely difficult to trust any doctors judgement a lot of the time! Clemmie.
This is going to be a difficult decision for you I can see. Although the French approach sounds more efficient and better generally re the drugs and attitude towards patients and expenditure - I can see that you currently have a very good NHS consultant, and like you I prefer to discuss and query my health plans with the doctor.
Have you tried getting a GP yet? My cousin lives quite near you in rural France and her Lyme disease was picked up by her brilliant GP there. She has had to make some decisions about whether to move with her young family lately but so likes and respects her GP that she made the decision to stay near to this woman rather than moving to a city. Perhaps a really good GP might make a difference to you although it sounds like Monsieur Rheumy is so accessible that you may not need the GP much - but then you and your husband might need the general practitioner more in years to come? And if you are to move to France full time shortly the decision is going to be made for you and at least he's very thorough. Could you ask for extra blood tests perhaps? Tilda x
As you know, I live permanently in France and in my experience it is the norm to strip off every consultation so that they can examine every joint. This probably explains why they always overrun because some patients take longer to undress etc. I also see my rheumy every time, never a more junior member of his team. It does seem to be the norm that they go straight from e.g. MTX to a biologic as this happened to me. I haven't had Rituximab for a while now because he thinks I am in remission, so I am just on my MTX.
One thing to consider is whether you see a local rheumy or one attached to a big hospital. I live in the back end of beyond up a smallish mountain and the nearest town is 30 minutes drive away, where the local hospital is. There is a rheumy who has her consulting rooms in that local town, if she needs to admit anyone she uses the local hospital. The nearest city is Toulouse (90 minute drive away), where there is a specialist rheumatology team, numerous consultants, junior doctors with all the specialist services attached - podiatry etc. I see one of the Profs within that specialist service at the hospital in Toulouse. if my husband is not available to take me and I am not able to drive I can get a taxi which is covered by the RA under the 100% system ie no charge. My GP sent me to this service because I was newly diagnosed and he felt that there would be more dynamic care which would benefit me initially.
They do not seem to have rheumatology specialist nurses but if ever I have a problem I just ring up his secretary and she or he will ring me back and if needed will give me an appointment to see him within the next week or so or quicker if needed.
I cannot fault the rheumatology service over here and I am convinced that I wouldn't be in remission if it were not for the biologics.
Since I have been stable I have bloods done every 2 months but that is very dependant on the previous results. I used to see the Prof every 3 months, then 6 and it is now every 9 months purely because I am so well, with the proviso that if things start to go pear shaped I can ring up and get an appointment ASAP.
The 40 euros that you paid is the standard fee that is paid for a consultation, once you are in the 'system' he will complete a form saying that you have an illness under the ALD system ( affection long durée ) and then all your fees (consultations and medication (although it is best to check that it covers any biologics))
Hope this is all of help and that I haven't taught you how to suck eggs!! PM me if you want to. What an exciting time, don't let it be stressful by worrying, if it feels right do it, you won't regret it. I know I didn't and I am a real worry pot.
I'm equally back of beyond, so the one I saw was in the nearest town 40km away which isn't huge and is pretty basic. But I am fairly stable now, so hiking off to the big city seems like a long trek - nearest is Lyon which is 2 hours away. And I quite like the idea of a rheumy that you can see fairly quickly and easily if need be. But it's a good idea to go and talk to local GP, as have yet to do that, and they might have a view as to the best specialist. And at least now I know that I have to get out best matching underwear before an appointment. It hadn't even crossed my mind that I'd be examined that carefully, but luckily I wasn't wearing my oldest undies as that would probably have been too much for French sensibilities! Pxx
I was going to reply to the original post with my own experience of having RA while living permanently in France, but Tiger's response is virtually word for word what I would have written. No complaints at all with the service, I went from GP who diagnosed me virtually instantly to a rheumy in the closest big town and then on to the hospital service where I now receive ant-tnf's and am monitored closely. Blood tests fortnightly at the moment, but I am just starting a new treatment (3rd bio drug) and all completely free of charge on the ALD system. Don;t let the healthcare issue hold back your decision to move!
The treatment you are receiving in France sounds good to me. One of the main manifestations of my RA has been the joints of my feet and as a result of this, despite the fact that I have had to have surgery on one ankle which left me immobile for 3 months and will likely have to go through the whole thing again for the other ankle before too long, my DAS score is still only 4.6. So I don't qualify for biologics. II simply cannot understand the reasoning behind excluding the joints of the foot unless, my, my, could it possibly be financial?
Does anyone have experience of the health service in Italy with regard to RA? I am in a similar position. I spend a lot of time in Italy and am having difficulty deciding whether to transfer to the health service there or to stick with the N H S and continue travelling back and forth.
What was wrong with his shirt??
Sounds like a difficult decision for all the right reasons i.e. both practitioners are impressive in different ways. The french system seems to me to make more sense, there are so many bonkers twists & kinks in the NHS - drives me MAD! And £40 for 45 thorough minutes is just great. Apart from the shirt issue the didactic approach seems to be the worst thing ...... but I bet you'd sort him out on that score!
Something I wondered about: isn't the DAS score a NICE thing i.e. British? And if so doesn't that mean that they would have put you on anti-tnfs before things settled down? That's interesting really because the arguably less 'serious' drugs have worked so well for you.
Well I went through a period where things weren't working brilliantly and I was struggling to keep down the cocktail of drugs, and getting various unpleasant side effects, so they were thinking of biologics. But I never managed more than 5.1 DAS because of habitually low ESR, so despite several attempts I never made the grade. Anyway, I gave myself a good talking to, and kept on with cocktail (although it was probably the switch to injectable MTX that made the difference rather than my attempts to persuade my RA to behave). But one or the other eventually worked, and things improved hugely. And DAS seems to be worldwide, but only NICE seem to use it to deny people drugs. Monsieur Rheumy had a very smart DAS calculator thing, with happy smiling faces when it was low and increasingly gloomy ones for over 3.2.
As for the shirt, I don't want to offend people who have similar tastes but it really wasn't mine. Swirly jarring colours, with stuck on bling. And matched with a designer cardy with embroidered letters saying something no doubt very cool, and very sharp glasses that were also a bit bling. I prefer my consultants in plain black suits.... Pxx
Bling is not good on a French man. Where is his chic?
I think you are being a bit of a style snob Polly! Suits spell reactionary and unimaginative - and isn't it quite good for a doctor to be swirly and bling perhaps? It indicates a propensity to non conformity and individuality of course - which might be no bad thing in a rheumatologist since RA is such a devilish and slippery beast it maybe takes the equivalent to really combat the thing?
Trying to think positively about this Monsieur rheumy for you here - how old was he? It HAS to be good that he actually examines your joints and you would hopefully be seen more often or even better, as and when needed? Maybe we just get so used to dull and drab in the NHS that we can't take anyone seriously who dresses flamboyantly?
When is your next NHS apt and could you ask your lovely UK consultant what she thinks about his approach and even what she knows about her French counterparts? Tx
Yup, you've caught me out in my style snobbery! But I felt he was equally conforming, but just to another set of standards that were about obvious consumption of designer goods....Dull, boringly dressed consultants who have no interests other than things rheumy are fine by me. Oh, and he was in his 50's I'd say. Good idea to ask UK one - I have appointment in September so aren't going to jump the NHS ship before then. But really it was his rather didactic approach that was more of a problem as I'm sure I'd learn to love his shirts in time. Px
Och I was only being tongue in cheek - I would be just as bad and feel equally relieved by my own consultant's conventional attire. It just seems quite radical to find a doctor who wears anything other than suits frankly - I'm not sure what I would do? The only snappy dresser I know from the medical profession is my woman GP and also a GP friend in my choir. The men are all like characters from the Boden catalogue - you can almost see it in print when they were kids "I want to be a consultant rheumatologist in a big hospital" or "I want to be a rural GP when I'm older"!? Perhaps your chap has the French equivalent and goes for it all in a special mail order catalogue re designer gear!? Suits suit me fine too on the rare occasion when I see one!
Perhaps you could write to lovely woman consultant and ask for her thoughts so that she has given it consideration by the time you see her in September? Tx
Hmmm, not too sure about the 'stuck on bling' but swirly sounds okay, I'll have to think about this. I like the sound of his calculator though - I'm imagining it flashing up an image of a distraught Rheumy in a gold lame catsuit sobbing on the floor for anything over 5.1 .... Dammit, I'm moving to France!
Glad you have all been lucky with your French doctors. I do have a friend who hasn't been at all lucky. She has a rheumatologist who is an expert in his field, writing papers and presenting at conferences all the time, and therein lies the problem - he just doesn't seem to have time or interest now in patients that don't exactly fit his research interests. She has also had a lot of problems getting the necessary tests and imaging done for conditions allied to her rheumatological problems. I guess it just shows that there is good and bad. Its probably a bit like the NHS, where if you have a relatively straightforward diagnosis, and are responding to meds OK, then you get quite good treatment. But if you have anything a bit more complex going on, then its not always quite so easy.
I must admit I am horribly jealous of those long consulations and the full examinations though. I haven't had that ever in the NHS.
Don't let's knock the nhs too much. I had a very thorough examination when I changed consultants recently. Also when I was in England with a good hospital too. The other day I was seen by dermatology 3 hrs after seeing my GP. I know I may be in a good place, but it is possible and could be a lot worse
I've always thought the NHS was great, which is why I'm am having problems with the idea of leaving it in general as well as specifically the rheumy I go to who is very good. And for emergency medecine I don't think there's much better worldwide. I find it horrible seeing it being dismantled around us, and all the people who work there being stressed out. Sure there are glitches, but that happens everywhere.
Agreed. We have a new system here in Edinburgh where if you have a chronic illness(es) your pharmacist has you on a list, and in my case, knows you by sight. You can go to them to check things out and they're really on the ball. It might be a way forward for the things that are really sub-GP.
I suppose I'm old enough (just) to remember the very early days of the NHS in the 1950s when I was admitted as a child into an adult ward with acute appendicitis. They had no idea how to deal with a child, asking me if I'd passed urine for instance, and - I was 7 - I didnt know what they mean. But I'm still here, and the basic care and cleanliness was very good, although some of the attitudes were objectionable. Discipline!! I've had a number of autoimmune ailments in England and Scotland and have found that the NHS has delivered most of the time. I do think that we need to be well informed and watch out for what is happening to us. The old attitude of total trust in health professionals is no longer any use.
My parents in law lived just outside Paris and had a very impressive local clinic which dealt with a cancer in an exemplary way. But when my mother in law developed alzheimers the combination of legal/ medical experts was a bit of a nightmare, though the local social care, meals and carers though not free, was very good.
So I can imagine that having to choose would be very difficult. Especially with all this change going on in England with the NHS and the EU. Our choices about health become politically charged. Do you have to choose? Could there not be some sort of sharing compromise? I always want my cake and eat it!
Oh I wish! I'm sure it will happen one day as the powers that be realise that people are much more mobile and the administrative borders have to become more flexible. I did phone the DWP to ask if there was any shared care arrangement across countries and you'd have thought I'd asked them to fly to the moon on a carpet.... The only way is if I pay for my health care in one country, which I can't afford. MTX is cheaper, but still all the drugs I take add up to about £200 a month which is just not possible.
Good luck, I guess you'd be able to go back to nhs if you decided to return to uk but its worth keeping an eye on things. They seem to be moving towards people paying for what they get... But A lot is vague plans
Good luck, I guess you'd be able to go back to nhs if you decided to return to uk but its worth keeping an eye on things. They seem to be moving towards people paying for what they get... But A lot is vague plans
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