ebaynut Posted March 6, 2007 Share Posted March 6, 2007 Hi, We desperately hope someone can help us with this, it's been a nightmare trying to find good information and advice.I am an 8 year renal transplant patient, with type 2 diabetes, currently in good health, and am looking to move to France later this year. We have been actively looking in the Limousin, Poitou Charente, Centre, and northern Aquitaine regions. What I really need to know is where are the hospitals that best serve these health conditions within these regions, as obviously this will have an impact on where is most practicable to relocate. I imagine that like the UK, there are specialist hospitals for transplanted patients and their ongoing treatment/tests, and it would obviously be beneficial to be able to move to a location that is within reasonable travelling distance to the healthcare that I would require. Also, being realistic, where are the dialysis centres, for when/if I need them.We would be enormously obliged for any advice available, or links that could help us.Thanks again,Julia Link to comment Share on other sites More sharing options...
5-element Posted March 6, 2007 Share Posted March 6, 2007 Julia, I have PM'd you as I have personal experience of this.In the first instance, you could contact FNAIR (Federation Nationale Aide aux Insuffisants Renaux). Link to comment Share on other sites More sharing options...
Jc Posted March 6, 2007 Share Posted March 6, 2007 Can't your hospital in the UK make any recommendations or even the charity DIABETES UK. Link to comment Share on other sites More sharing options...
TreizeVents Posted March 6, 2007 Share Posted March 6, 2007 [quote user="Jc"]Can't your hospital in the UK make any recommendations or even the charity DIABETES UK.[/quote]In my experience, very few if any of the specialists in Britain or France have any idea, in any useful specific sense, about what goes in the other country. That may sound odd, but it seems to be true. It is pretty much up to the patient to do the research. This will give you the contact in each area you need to check out. http://perso.orange.fr/fnair2/regions.htm You could also try asking a question on the FNAIR forum. Maybe you can ask in English and someone will respond. http://perso.orange.fr/fnair2/forum.htm I don' t know how well you speak French, but in my view, you should really think very hard before you use kidney care in France without speaking French. You can get lucky, but there is no guarantee and you will miss crucial information and not know you have missed it, if your French is poor. Imagine that you would speak pidgeon English and try to figure out what is happening in an English hospital.From all I know, the kidney care in France is very much better than in England. Link to comment Share on other sites More sharing options...
5-element Posted March 6, 2007 Share Posted March 6, 2007 Julia - I noticed that you had asked those questions on another forum last year, and you had been given all the information available: were you able to follow up the suggestions? Did it help? What happened? Link to comment Share on other sites More sharing options...
TreizeVents Posted March 6, 2007 Share Posted March 6, 2007 I have also PMed you with more information. Link to comment Share on other sites More sharing options...
ebaynut Posted March 7, 2007 Author Share Posted March 7, 2007 FAO: TreizeVents & 5-Element & JcHi,Thank you so much for your replies to my enquiry and your pm's, We have been facing an uphill struggle to get good information. My husband is dealing with all the confusing stuff in relation to the implications of the financial minefield, pensions/wills/inheritance/taxes/banking etc. But I really wanted to try and get a clearer understanding (!!!!) of our healthcare.We have been looking into moving to France for sometime now, but have met with the usual unforeseen life-interrupting delays, particularly associated with our aging parents, however we seem to have got on top of everything now, and we can see the light at the end of the tunnel, and we finally feel that it is now happening.....at last!Our 'French' I have to admit is not great, although we manage when needed, but we are under no illusion that this must be improved, and have opted to get some intensive courses under our belt. One of our sons, who is 26, is coming with us, and his language is considerably better than ours, but we can't rely on him to nursemaid us.At this stage, we think we will probably be within 80 kilometres of either Limoges/La Rochelle/Poitiers/Tours, but if any of these don't have a transplant specialist unit, then we will have to discount that option. My hospital have been, what I can only describe, as 'dis-interested' in offering any advice regarding our move, and frankly look quite aghast at the prospect of our plans, but we feel assured that the French healthcare system, as a whole is superior to our own NHS, particularly in relation to transplants/research.Initially we think we shall probably remain as UK citizens, until settled, and then join the French citizen system. We have the EU health card, and believe that the E106 will cover us for the interim, although we could be wrong here. One of the next things we have to do is contact Newcastle (On our list of things to do!) to see what is going to be most practicable, but we are trying to get as much information beforehand as possible. My husband is in good health, and will require full cover/insurance.One of the things that is confusing me, is that due to my conditions, I understand that I will be entitled to 100% healthcare cover for 'these' conditions, but am I right in assuming that I would also need medical insurance to cover me for the other 30% of costs for 'other' ailments? (would I have trouble getting insurance for myself?) And, how can you determine which other new ailments are caused by your pre-existing conditions, as obviously being on immunosuppressants make you more vulnerable? i.e: I developed diabetes through Rapamycin, and not the usual diabetes-caused-kidney failure syndrome, and I also have high blood pressure (surprise/surprise), and high cholesterol, both caused by my medications. Also, I have an 'enormous' inscizzional hernia on the graft site, which my doctors are extremely reluctant to repair, and this has other implications on my mobility. I am rather hoping that eventually my French doctors may be a bit more approachable regarding this.Also, I presume (perhaps naively) that I will be able to get the same meds that I am currently on without too many problems. I was previously on Cyclosporin/Rapamycin, the latter causing the diabetes/high cholesterol and the hernia, but am now on Tacrolimus. In addition, I have Rosuvastatin for the cholesterol, but understand that this is a relatively new drug, and am not sure if it is available in France (also Ezitimibe)? Also, is rosiglitazone (diabetes) also available? Would I get these via my GP on a repeat prescription, as I do now, or directly from the hospital? My diabetes is currently supervised by my district nurse, although my nephrology consultant is most likely to adjust my meds, would the same by applicable in France? Also, where would you go for your routine tests, I presume the hospital, not the GP?And on a rather pessimistic note, when on dialysis, I was co-erced, (you could even say bullied, for which I eventually thanked them enormously) to go onto CAPD from Haemodialysis, is CAPD encouraged, or is Haemo the preferred option in France?The FNAIR has been mentioned a couple of times, and sounds interesting - where do I get hold of the back issues, and where can I join?I suspect you rather wish you hadn't replied now, and I fully understand as I have swamped you with questions (I would proably be well advised to stop here, although I can assure you, there are lots more), but any information, on any aspect would be very much appreciated.Thanks again to everyonePS: 5-Element - I originally asked the same question before on another forum, but got no replies. When I posted a similar question sometime later, we suffered a bereavement, and it got lost in the moment. We did get a reply, but wasn't emailed, (I had forgotton to register a change in our email address, so hadn't followed it up, but have since found it (after much searching).Was it you who replied? I shall certainly look into the suggestions.PS: TreizeVents - Thanks for the links, I can't get a connection to the first one, and am struggling to get an understandable translation on the other, but will persevere, thanks again.PS: Jc - They don't seem at all interested in trying to help or advise, they appear bemused & bewildered, and are questioning my sanity (perhaps they know something I don't!) Link to comment Share on other sites More sharing options...
5-element Posted March 7, 2007 Share Posted March 7, 2007 Julia, I thought I would answer a few points here rather than pm: it might benefit others, who knows?As I said before, FNAIR is the Federation Nationale d'Aide aux Insuffisants Renaux, roughly similar to the Kidney Patients Association in the UK. I would strongly suggest that you join NOW: once you are a member for 31 euros p.a., you receive their monthly magazine - I stress that you can do that from the UK, then you can study, really study, the magazine, and you will find tons of information there, regional and national (or course it is in French!). They have sections on each region, with local groups, update on new medical information that concerns anyone who is a kidney patient, whether on dialysis or transplanted, whether they have other pathologies (like diabetes etc.) or not.their website for the regions is www.fnair.asso.fr for instance, for Limousin, the regional headquarter is:FNAIR -Maison des Associations - 16 avenue de la Republique - 87170 Isletel/fax 05 55 05 04 49their address: FNAIR, 9 Ruelle du Pont - 69390 Vernaisonphone 05 61 62 54 62or FNAIR 31 rue des Freres-Lion - 31000 ToulouseSecond point: you mention that you would "remain UK citizens" and then become "French citizens". I assume you mean "residents", not citizens (you can only be a French citizen if you acquire French nationality!). However, from the moment you move to France, you are a French resident, and you need, probably before your move, to ring Newcastle who might give you a E121: do you get long-term incapacity benefit? Are you still working? Or not? I would strongly suggest that you get in touch with Newcastle straightaway about all this, they are usually very helpful.From the moment you register as a French resident (the transition should be smooth, i.e. no dead time, which for you is crucial given you need constant monitoring), then you plug into the French medical care, automatically being entitled to exactly the same healthcare as a French person. If you are on UK ling-term incapacity benefit, then you automatically get 100% of all your healthcare free. If you are not, you will still get 100% on everything that concerns your kidney condition - I understand that diabetes is sometimes debatable as entitling you to 100%, but in your case, if it is linked to the kidney failure, then it will be part of it. It will be the nephrologists (probably not the GP) who will help you sort all this out, but it should really happen automatically.Regarding your medication, I know for certain that Tacrolimus is no problem here - whereas I understand that in the UK, Cyclosporin is still often favored since it is cheaper. There are variations from hospital to hospital about treatment protocol, here they seem to often favor a tri-prongued immuno-suppressing treatment, i.e. they might give you tacrolimus (Prograf) and a steroid as well like Propranolol. Once you are registered as a patient of a given nephrology/transplant unit - I do think that Limoges at least has one - then you are scheduled to have regular checkups, with regular blood tests to check your creatinine/urea etc... and also dermatology appointments, etc... I don't know but I would imagine that the diabetes would come into that category too.As for the medication, your GP cannot normally prescribe it, you will get a prescription from your nephrology unit every time you attend.You also raise the question of CAPD versus haemodialysis... well, here it is exactly the opposite of what I found in the UK, where they would desperately try to put everyone on CAPD.... simply because there are not enough haemodialysis machines and dialysis units. I saw the case where this was done for someone who was desperately ill, and for whom CAPD was no longer working (CAPD is only good for people who still have some remaining kidney function, usually). In the UK where this happened, there was simply too long a wait before you could get to a machine. Here, it is not at all the case. I have come across various nephrologists who have heard horror stories in the UK, of patients reaching a state of near-death before they could manage to find them a dialysis machine and slot. Here in France, I was told emphatically that it is not the case at all, patients get dialysed much earlier on, before their creatinine levels reach stupendous heights. And CAPD has never been pushed, or been very popular either. Patients here tend to be encouraged, in suitable cases, to do home haemodialysis, which means converting a room in their house, training a carer - usually the partner if they feel up to it, and are able to stick the needles in, but they are really trained to do it - many people whose dialysis is relatively straightforward, end up doing home dialysis. There is even an allowance which is paid routinely to the carer. Otherwise, there are the normal haemodialysis units, some heavily medicalised depending on the pathologies of the patients,others are just small, satellite units with just a couple of nurses. But so far, I emphasise, there seems to be no problem with getting haemo-dialysis in France if/when you need it.Otherwise, the staff is much the same as in the UK. The renal nurses, and the nephrologists are not necessarily any better - there is some very fine staff indeed in the UK!!! - but the difference is in the facilities usually; so much more money seems to be available here for both equipment, and for number of staff. Having said that, it is supposed to be changing, there is a bubble waiting to burst in the French health system too.I hope this answers at least some of your questions. I could probably go on much more and give more details, if you want to pm me and maybe give me your email address - and you could even ring me. Having said that, I don't live in the area where you intend to move. Link to comment Share on other sites More sharing options...
ebaynut Posted March 7, 2007 Author Share Posted March 7, 2007 Hi 5-element,Yes, I did mean resident, my brain has gone!I shall pm you later if that's okay.Thanks again. PS: I am going to get onto the FNAIR website and try to get registered asap. I can fathom out some of it, but not clearly enough at the moment, Perseverance will prevail! I'll let you know how successful I am. Link to comment Share on other sites More sharing options...
haylegooner Posted March 12, 2007 Share Posted March 12, 2007 Hi, I'm also a transplant patient of five years. I've been on rapamune & azathioprine with no bad side effects so far- apart from weight gain![:'(]We are hoping to move to france in the near future but havent decided where yet. We have found the posts in this thread very interesting and informative.We would be very grateful for any info on renal care in france ie hospitals and anybodys experiences.Thanks Malcolm & Debbie. Link to comment Share on other sites More sharing options...
ebaynut Posted March 13, 2007 Author Share Posted March 13, 2007 Hi Debbie,Follow up with the links recommended above, they are very useful. (Hope you can read French)I have pm'd you with a brief note.Best wishes,Julia Link to comment Share on other sites More sharing options...
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