How does NHS GP work with private consultant?

After a year of feeling as though I'm having to drive my own health care and feeling I've hit a double block wall now Ive decided to see a private rheumatologist a long way away from my own health authority (he's been recommended and works in the hospital by where I grew up). I haven't asked him yet or spoken to my GP about this but would be really grateful if anyone knows how this would work and if I get put on anti-tnf drugs then who pays for this how would it be monitored? Double complication being that I live in Scotland and would be seeing someone in London.

[Beth58]

Hi, if your planning on travelling that far for treatment why don't you ask your GP to refer you to the Royal Hospital for Rheumatology in Bath. Many of my friends with A.S travel from all over the country for treatment and swear by the help/support and specialist treatment. I've added the link for you.

On the other hand if you know a consultant, I'd imagine if you ask your doctor to make a referral as a private patient he would, treatment would of course have to be paid for unless the consultant transfers you to his NHS list but it's a long way to travel for treatment.

nhs.uk/Services/hospitals/F...

Good luck

Beth xx

[Gina_K]

Hi Tilda,

As I am not in U.K , but in Ireland. I can only tell you, anti tnf not available privately and although I went to see my Consultant privately, as is the semi norm here, I had to transfer (temporarily) to public system (NHS) to start my treatment with Rheum nurse etc.

From what I can gather, and my sister lives in Oxford, the English system is very varied depending on where you live in the treatment of RA.

Personally, I think it the best money you will ever spend and I am so glad you are going ahead, the treatment you have got so far is second rate and I think you deserve better. I would be disabled, like many others without my anti tnf, I have a good life now after the shock of it all! Please please, go with haste to private Rheumatologist as has been suggested, probably by people who love you. There is a weird attitude in U.K. to going private. It is not the same everywhere. My poor sister is in so much pain, on the waiting list for a knee replacement, it would have been done a long time ago if she lived here.

Kind wishes, Gina.

[Mel_]

Hi Tilda,

Well done for coming to this decision, I bet it's been a long time coming. Now I don't want to be the one to put a dampener on things but I spoke to my consultant a while ago about this and I was told that if I went private I would have to pay for all treatment as the NHS would no longer offer it, I was also told that I would have to pay for any future consultation periods as well. (as you will know from my blogs I've not had an easy time with my consultant so I honestly don't know weather to believe them or not) I would speak to your GP as a first port of call to discuss your options, as Beth says there may be other options available to you. I wish I could afford to think about going private if you can and it does not leave you covering all the costs of future treatment then 100% do it. Night night! Mel x

[Hidden in reply to Mel_]

Sorry Mel we overlapped. I'm really worried as I think your consultant might be right and I can't cope with the thought of using up all the money we have been saving for the boys' university/ further education. Will discuss with my GP and see maybe a one off visit might be the answer. I'm scared but also starting to fume that my local health authority has put me in this situation at all. It just shouldn't be like this? Grrrr!

[Hidden]

Thanks Beth and Gina. I've just found the consultant's number and details for his private practice and he's very well regarded. I've been told about him by some one who's known me a very long time and is a close friend and very concerned about me. Her brother in law is a rheumy and he has recommended that I see someone privately and given me his name - someone who works with him.

It's very alien to me to see go private because my parents and grandparents were all great believers in the NHS and I've never seen anyone privately before. We are relatively low income but I have some money put by for the kids higher education and holidays etc and both my sisters live in and near London as well as some of my closest friends so I feel it's a better option than seeing someone in Scotland for me. I think I'd just feel a bit hacked off if I was paying to see someone who hadn't been recommended to me whereas at least this way I know I'm going to get what I pay for and have some fun seeing friends, family and galleries etc too? My friend pointed out that I owe it not just to myself but to my family to take my health more seriously and if that means sacrificing family holidays and travelling 800 miles then so be it. She was quite forceful with me and it was a bit of a wake up call. Her bro in law said I should move quickly "The window of opportunity will be closing to stop erosion of your joints, the longer you stay on a therapy that is not working well for you. Little fingers sticking out can be a sign that some joint damage is already occurring" and it put the wind up me so I plan to make an apt tomorrow but just really wanted to find out more about how much this might cost and how it all works before embarking on a very new direction.

My two deaf sisters will be very relieved and also thrilled to see more of me - of that I'm sure! But just don't know what on earth to tell my GP I think he might be horrified and I'm sure I couldn't afford to pay for very expensive medication so all that side of things is scaring me witless. TTx

[Beth58 in reply to Hidden]

Hi again Tilda, sorry I don't want to sound dumb but if you already have a diagnosis what do you expect to gain?.. Anti-TNF therapy is very expensive which is why consultants have to refer patients for assessment and apply for funding for it. xx

[Hidden]

Okay well my problem is this Beth. I have seen a consultant twice now for about 20/ 15 mins each time and on the strength of my symptoms he diagnosed sero-neg RA with the proviso that "we should keep an open mind - this is a working diagnosis and things could change". I was then put on MTX up to 15mgs and he said he would see me again to review my progress in March. But as I had heard nothing at the start of March I phoned Medical Records in our local NHS and asked and they looked at the list and said I was very low on it and certainly wouldn't be seen this month. I asked when I might be seen and they said they really couldn't answer that until a few weeks before the next visit in May but that would be with a different consultant anyway.

Meanwhile there are no rheumy nurses up here and no one checks on my symptoms - if I have any problems/ flare ups I can see my GP who can write or phone the rheumy in Aberdeen. But what about raised inflammation markers (ESR still 42) and the fact that I'm still experiencing low level pain in feet and arms and am very stiff still. I'm checked for bloods re MTX (liver and wbcs) every month and only have inflammatory markers taken if I ask when the practice nurse is taking the blood.

I haven't a clue whether I really even have RA or not and am unsure whether the MTX is working or not. Although I am very much better than I was pre-mtx I suspect that low level pains I'm experiencing, which worsen a little every day, might mean the disease is still active, but won't find out until I see the rheumy whenever that might be. On top of a return of wrist pain and aching ankles and toes I'm finding that I'm suffering from bouts of severe depression over the few days after taking the MTX. The rheumy has sent a message via the physio to tell me that he doesn't think it's the MTX that's causing these mood changes - even though a GP told me they are a recognised side effect - and the message from rheumy (whispered during a choir rehearsal) thinks I should stay on the MTX as would be more depressed if I flare up. This seems to me to be a very un-joined up way of doing things and I don't like it one bit. What do you reckon? xx

[Hidden]

PS My GP tried me on Sulphasalazine last May/ June because I was going to have so long to wait to see a rheumy but i had a really bad reaction to it - so that rules this second DMARD out for me.

[heatherp]

Hi Tilda,

I am very fortunate in that through work I have BUPA, and got referred to a private rheummy at the beginning by my GP when my bloods first indicated something may be wrong. I rang up the BUPA hospital and had an appointment for 2 days later, before the GP's letter even arrived with the rheummy. He looked at my symptoms and diagnosed purely on what I had told him and started me on meds immediately, while he requested other tests. I have always felt that because of this really prompt action and care I haven't suffered anywhere near as much as others. Even though I have had problems along the way (usually side effects from meds more than the disease itself), I have always felt confident in the care I've received and feel it has made such a difference. The consultant simply writes to my GP to tell him what to prescribe, what tests to do (bloods etc) and anything else going on, and between the two it works really well.

However, we did discuss anti-tnf at one stage (as all DMARDS were reducing white blood counts to really low levels, but seem to have that under control now!), and the consultant told me that the only way you can get them in the UK is on NHS. He said that if I got to the stage of needing it, I would need to transfer to NHS as no private insurance companies in the UK cover any of the anti-tnf drugs, so couldn't do it any other way. I once looked up the costs of the drugs and they are really not cheap!

However from your point of view it may be an idea to simply go an have a private appointment with a consultant who will give you the time and listen to you? That way you can get some good advice, but without spending huge amounts on the drugs?

[Hidden]

That is so helpful Heatherp thank-you! I have been awake since 5 am lying here worrying about everything. I feel under so much pressure from various sides and it's splitting me in two and making me feel I'm going nuts. On one hand I'm just getting the message that I have mild inflammatory arthritis - " a workiing diagnosis of sero negative RA for now" with my GP trying to tow the line of the rheumy and giving me the impression that I'm being paranoid and a tad neurotic that my hands are shifting shape (I know from the other GP that he's actually quite concerned about the way I'm being treated though).

On the other side I have my friends and one friends pretty eminent rheumy relative giving me the message that I have this one window of opportunity before serious damage is done to my joints. I've only had a few intense flare ups in my wrists, fingers/ knuckles and knees to date but each time this happens my range of motion seems to have become permanently limited and it really scares me. I feel like my NHS system where I live is dragging it's heels terribly and preventative medicine doesn't seem to be on the agenda.

I'm told by my GP that he will phone the rheumy if I'm having repeat flare ups but what about this low level pain in my ankles and wrists I have that's increasing slightly each day? So I think I will aim for a one off private rheumy visit but am hoping this will not compromise the existing care I'm receiving here because I certainly cannot think about paying for my medicines on top of paying for the flights to London and the consultation. I will ask my GP about all this tomorrow because I am really worried about chucking the baby out with the bathwater. I liked the rheumy I saw and he seemed cautious but trustworthy - just very over-stretched. I'm self employed and currently earning zilch and my OH is a local authority careworker and we just can't afford to use up our savings, meant for our children's higher education and our pensions, on private healthcare - we've both worked and paid taxes since we leaving college several decades ago and it seems all wrong to be forced down this line somehow? But I know from others on here that life is unfair and all we can do is try our best for ourselves. TTx

[cathie]

I've had a private consultation twice, one with a recommended consultant in a different health authority and another emergency appt with the nhs consultant because of a mix up with one of his colleagues.

The main difference I found was time. A good long leisurely talk, making sure we tackled things methodically. I got a written report. Basically I was paying for that rather than a magic solution. The first just set out the options so I understood them better. The second enabled him to overrule his colleague so I could stay on an anti tnf which was working. I paid £150 for half an hour of information giving. Then I could take that back to the nhs.

If I wanted to get a second opinion or this information, I'd be more inclined to go to a consultant in the area where I'm being treated, eg. Aberdeen. That way the recommendations they make could be fed directly back into the system. Anti tnf costs about £1k a pop every eight weeks.

I did find it useful to have these consultations, but like you, would not find it easy to afford this and also have ethical problems about private health care. But when your well beings on the line, it's a bit different isn't it.

Hope your husbands return is a good one. A good friend of mine gave me excellent advice when we started having extended periods apart, which was to give yourselves a sort of air tight compartment when you get back together. A drink or a walk, possibly even a meal out, so you don't start sharing all the hard stuff together.

Xxx

[swoodge]

Hi just a quick note to say that i went private to get an accurate diagnosis in the beginning as i was in plaster with the diagnosis of broken legs and wrist after a fall and then privately plasters taken off and nuclear scan later i was correctly diagnosed as sero negative RA!! When i got the stage of needing Anti TNF's though i had to transfer back to the NHS as in the UK you cant get it privately only on the NHS!! So i then had to wait on the list until i could see the same consultant on his NHS waiting list and carry on with my treatment!! Strange but it has worked. I would say that the drugs on the private prescriptions are extremely expense but once i had the first ones it was then sent over to my GP who prescribed me a refill from there so i only ever paid for the first lot. I hope you get on ok and get a proper diagnosis which is essential for you in lots of ways, I know it was for me as i thought i was going mad with pains going from legs to arms to feet and hands all the time and the doctors telling me they couldnt be!! Best of luck Sue x

[Hidden]

Thanks Cathie and Sue. Cathie that really is helpful too because I think we approach the private/ nhs things from a fairly similar perspective so your experiences resonate for me especially. I don't think I would want to see anyone else in Aberdeen because a) I have no one in Aberdeen I could stay with and don't like it much and b) I think it might really annoy my present rheumy as I'm not actually doubting his diagnosis or looking for more clarity when there is none to give probably - but just sick of being rushed and not having a chance to ask questions or be heard - and even more sick of being passed over and then getting messages delivered to me via a third party about depression and MTX. It's my fault because I stupidly let slip that OH was away because his father had died and the rheumy obviously put 2 and 2 together and not unreasonably deduced that this was causing my low moods not the MTX.

The GP I saw last week understood this because he was seeing me face to face and can see I'm a rational sort of person not prone to depression. If I say I'm sure it's chemically induced to someone face to face, arguing my case reasonably well then they will believe me I'm sure. Whereas this consultant probably can't remember anything much about me and just reads the email and uses this as his get out of seeing yet another awkward patient quite easily!

I would rather see someone on completely different territory and also use it as a way of having a bit of a break as haven't been off my island since November and hardly ever see my sisters or friends south any more since my parents died. I will do as you suggest Cathie and see this man once just to get a chance to clarify things and get it explained and put it in writing would be so good too. Also it might stop me flitting in and out of denial constantly if I'm seen and checked over properly by an expert who is being paid to give me his honest opinion I think.

Thanks Swoodge it's useful to learn how it all works I'm really grateful to you! TTx

[helixhelix]

I think the idea of seeing someone privately to have a full discussion about your RA would be something that you'd find helpful, and is probably worth the £200 it would cost. You would need to go armed with blood test results and so on, and wouldn't want to have to pay for another set.

However, going private for your overall RA health care in the long term does sound a bit impossible, as you might have to pay for everything so it's drugs, tests and consultations and as others have said if you end up being in a position of wanting biologics then that's not possible. Private medicine doesn't give you so much as a free bit of cotton wool to pop on your arm after a blood test. So seeing someone else wouldn't solve the problem that you're not happy with the level of care you're getting.

Which means I think you also need to speak to your GPs surgery about that too. I think you mentioned that there's a possibility of a teleconference with the rheumy, as well as the GP just speaking to him or his nurse. Personally I'd jump up & down a bit to get one or both of these options underway too - or could you even pay to go to Aberdeen to see him? You may have to dramatise your aches and inflammation symptoms a bit, but your bloods are not at normal levels and there are loads of other DMARDs they could try you on apart from the MTX you're on and the sulpha which doesn't agree with you. You need to emphasise that you're really, really worried about long term joint damage and you want something else NOW. From what I've read 6 months seems to be the trial period for each drug, and you've been on MTX for 6 months now so I think you can say that by itself it's not enough to control your symptoms - without even mentioning the waves of depression that you're getting. And if GP says that there isn't anything else possible then go to your MP, or health board or Patient Advice & Liaison Service (PALS) or whatever the Scottish version is. Free health care at point of service is our right! Admittedly the scarce resources mean that we can't have lots of 1:2:1 care, but you should still be seen if you're not yet stable.

Rant over.

Pollyx

[cathie]

It helps for us to see advice all going in more or less the same direction. It makes sense for you to go where you can stay with relatives/friends. I was living in Oxford and went to someone at UCL first then the second consultation was in Oxford anyway. I must be a rather literal person (as one of my art tutors said a while ago) because I like to see things written down. You can go back to it and look at the writing again can't you. But for consultations that promise to be milestones I tend to bring Paddy who takes notes. We have learned how to get over the tendency some consultants have to speak to him rather than me, but that's a risk you have to deal with. And I would actually ask for a written note of the consultation just in case...

On Polly's message - I love it when the trolley comes round handing out free tea and biscuits to all and sundry. Its our service, we've helped to pay for it, and its a very special feeling. I've only ever been to three private places - the first at UCL was actually in the hospital, the second in the doctor's own consulting rooms and the third was when I went to a doctor on a friend's insurance when I was in the US. He syringed my ears when I only wanted an antibiotic!! All very plush though with stripped pine and plants.

XX

[Hidden]

I see my Consultant privately. BUPA originally paid, but since diagnosis they will not pay anything at all towards RA including check-ups, physio, OT etc etc. I see him every 3 or 4 months (or quicker if I need to). He writes to my NHS GP (with a copy to me, to keep me in the loop) who does all my blood tests and prescriptions, and my GP is happy to do this. I do not need to see my GP at all for anything to do with the RA, as I go straight to Consultant, and, yes, I do know how lucky I am! As I always see the same Consultant, he knows me and my specific problems. If you can, I would say it is definitely worth it to go private. One way of looking at it, is that by going private you are freeing up time for the NHS to see a different patient!. I can't help you with anti-tnf, as I am not on them.

Virge

[Hidden]

Hi Polly, Cathie and Virge. Thanks Virge for your experience of private/ nhs. I guess it's all about mindset really. If it was the system I'd experienced and lived with and it was all close by then I might feel that private is the way to go because I don't want to sacrifice my joints (and even my sanity!) for principles - I'm just not that noble. But even Edinburgh is far away - let alone London and I think our money might be better spent on a holiday in the sun - soaking up a different culture which we haven't been done for 2 years now. That way the boys would benefit too.

Yes I know exactly what you mean about the tea and biscuits Cathie - that's how I feel about the NHS too! Even when my dad had his first big heart attack and was spirited off to Charing Cross Hospital by ambulance and was in intensive care for a week or so - and out in the corridor there were homeless people with blankets sleeping on the lift floor landing (this was in the mid 80s) it felt like the real world and better for it somehow? My dad was so grateful to have his life still that he wouldn't have dreamed of ever going private for his diabetes or his heart problems.

But there's such a difference between the extremely wealthy and their approach to health and medicine here in the UK. People like this don't exist up here really although I know there will be people who pay for their healthcare because of limitations here. But now he's home my OH says that if I announce to my GP that I'm trotting off down to London to pay to see some big wig rheumy he'll just wash his hands of me a bit (without actually saying that's what he's doing). I don't think I can do it actually.

I've been at such a low ebb lately and am so easily thrown back under that I know it would be devastating to lose the goodwill and support of the people I have looking out for me up here. It's not something I can explain easily but somehow my GP, physio, OT and the nurses and even the receptionists have seen me through all this and know that's why I'm having my blood taken so often and know how hard it is to be seen sitting in a waiting room so regularly - how much weight I've lost, how hard I try to overcome all this RA stuff etc without ever saying a word.

I gave them a few old NRAS mags for the waiting room today and a few posters for the info board and they looked quite pleased. It's a close knit community and there are very few secrets here but it did feel a bit like coming out!

I just can't see myself swanning off to London and seeing some man for £320 (excluding VAT!) when I've already got a rheumy who I like and trust - even though I've only met him twice very briefly and he's obviously bogged down with a huge list of patients. I think you might be right Polly and I might have to really jump up and down tomorrow and ask for a tele med consultation but I'll see what he's been up to on my behalf first. The practice nurse did give me a meaningful look this morning when she took my blood and said "you know a letter has been written from here to your consultant don't you?" - probably meaning she's wise to the depression/ mtx business. Oh well I'm beyond caring to be honest. Not sure if I've got the energy or strength for jumping up and down and getting seen anymore. Sometimes denial seems easier option but we will see. TTx

[Hidden]

Tilda, on the question of costs, I pay £135.00 to see my consultant - not £320.00. London is naturally very expensive. If you want to e-mail me on [e-mail] I will give you his details. I live in Bristol (cheap Easy-jet flights from Scotland (?)) and would thoroughly recommend him. Please don't be put off by thinking that your GP would 'wash his hands of you'. Any good and decent GP would surely be pleased that they would be given advice as to what meds etc you require, along with the knowledge that he/she is being given the best advice as to how to manage your condition. I think that is why my GP practice is so helpful re blood tests, prescriptions etc. Everybody on this site seems to be of the opinion that a lot of GPs simply don't have the training/knowledge regarding RA. If you do decide to see my lovely consultant, you would be more than welcome to stay at our house - I don't work and would be delighted to act as your chauffeur. It seems to me that once you have a lifeline to cling on to, the rest of your day to day life will slip into the correct position. Anyway, enough of my blathering.

Virge

[Hidden]

Tilda, sorry to be boring but it is me again! I have re-read the above and the main thing that is sticking in my head is that you feel guilty about spending money allocated for your boys' education, holidays etc. From how I see it, if you can get yourself sorted sooner rather than later, surely family holidays, going to Uni to see your children will be SO very much easier if you are (hopefully) free of pain and able to actually take part in your family's activities. Even though I don't know you, to me it is a no-brainer. Pay to get yourself sorted, I feel that your depression and associated awful feelings regarding the future could be put aside. If I was you, I would feel depressed because I had no support, understanding, knowledge or involvement in treatment. Surely a couple of days out of your family life every few months would bring immeasurable benefits in the long term? If you were to ask your boys and OH in a few years' time as to which path they would have preferred you to take ...... either you in pain, depressed OR seeing a rheumy you trusted and sorted you out ... well, I think you know the answer. Some 20 years ago, I was living in London and seeing an Oncologist very, very regularly in Yorkshire. This was after 2 years of hell for me and my family due to wrong diagnosis. I appreciate the distances are shorter, but I did it - at the time I was given a terminal diagnosis of 3 months' life. Don't feel guilty - you owe it to your family to be as healthy as possible.

Virge

[cathie]

This is a difficult one Tilda. I don't think I ever told the Oxford team that I went to UCL. but the information I gained did help (just a bit) me to negotiate a bewildering set of obstacles. I'm not sure it would have been worth going all the way from where you live for a quite short consultation, but it did help me to settle. I freaked out quite a lot when I was diagnosed because my mother had RA and was quite disabled with it. That was before the new treatments etc.

I do think your partner has something about not wanting to alienate your local team. If it was me I would get a second opinion but keep quiet about it. Knowledge is Power we used to say back in my street fighting days!! (I joke - a bit). I suppose my strategy is to try to have my cake and eat it isn't it!

But the bottom line is that we have got something really awful wrong with us (I'm trying to remember that you haven't had a clear diagnosis). and that anyone would find it hard to accept. Not accepting is part of surviving and fighting back. i actually have a better quality of life than I'd ever have thought eight years ago, but anti-tnf has I think been a major part of that. I find it hard to believe that there's any reason why you shouldn't get it where you are. If that's an option you'd be prepared to try.

Am drifting and must go and chill out before bedtime.

XX Cathie

[Hidden]

Virge - thanks but I think I've been a bit misunderstood. This is probably my fault as I tend to write rather laterally instead of thinking about how my words will be interpreted on here. As it happens I have already asked my husband and the boys what they think and they are all completely in favour of me spending money on my health if it will help me. This was the point my friend made when she phoned me on Friday and suggested I go to a private rheumy in London and it's one I'm mindful of 100%.

And I promise that I will do it if I believe it will going to be money well spent for now and for my future for sure. But at the end of the day I live in this small very far away place, for better AND for worse, and I don't want to alienate my GP and the rheumy who's list I am at least on - even if he's not seen me as often as he should have because of backlogs and waiting lists etc. I only mention my sons and husband because I think it would be quite a big gamble probably - throwing money at a rheumy who might be pompous and give me all sorts of unrealistic ideas about what I should or should not be doing to prevent joint damage etc. He might even contradict my rheumy up here and say "inconclusive" and then I might end up more stuck than before? What if he didn't say anything more illuminating than my present rheumy?

When I spoke to his secretary today it was all very International sounding and she told me she could get me an appointment as soon as I could get there and yes it was tempting in a way. But then when the one off consultation had taken place what if all I'd achieved was to alienate those up here who are currently responsible for my healthcare? It's not as simple as just throwing money in the knowledge that I'll definitely get better quality advice I feel.

I understand what you say about the oncologist and travel etc (which sounded appalling poor you) but this rheumatology business seems to be a very inexact area of science and I am still not convinced that the £320 plus another £250 for return flights would necessarily be money well spent? That's really what I'm worrying about. If I was starting from scratch with this RA stuff (i.e was where I was a year ago) then I would feel more certain about spending money re getting a diagnosis. But as Beth has pointed out I do at least have a rheumy and a diagnosis so perhaps I just need to summon some of my old more angry energy up and push for better care and more attention from the healthcare team up here?

I think you are right to point out that the depression is probably as much about the situation I'm in as it is about the pain and diagnosis or the MTX. I plan to point this out to my GP tomorrow and see what he has to say before deciding anything. My OH returned home with a book by Charles Saatchi where he describes depression as being "merely anger without enthusiasm" - I like that! TTx

[Hidden]

PS the £320 is for first consultation only - after that it goes down each time to be about £160 on subsequent follow up visits.

PPS thanks so much for kind offer of accommodation and chauffering etc. If I got to the chap in London it's in the hospital next to where I grew up and is near two sets of very close friends and not that far from either of my sisters and their families so that was one of the attractions I admit! But I could just go for a rather desperately needed break and just sneak a trip to the private rheumy without even telling my GP perhaps?! (just request print offs of my blood results without actually telling them why?) TTx

[Hidden]

Tilda, when it comes down to it ... just go with what suits you and your life. Let's face it, you know where you are and how much you can cope with at any given time. I sincerely feel for you and your situation - it is all very well me sitting here in Bristol with a lovely consultant and NHS GP service sorted out. You are in a very different place with family details to contend with. Good luck and don't forget ... the only way is up! I am still of the opinion that your GP will only be supportive as they would get the info re meds etc that they are probably not currently getting.

Virge

[Hidden]

Hi

I've had a quick read of the thread & the replies as I see my rheummy privately, fortunately I am covered by my husbands work policy. However they will stop funding it when I reach a stable situation - wonder when that will be! My dr - a Prof in rheumatology, charges £!60 per hour, I wouldn't be able to see him under the HNS as I am not bad enough! My GP does all the blood checks & prescribes the medication. I did go and see an NHS dr who although her had all the reports from the Prof refused to accept that I had a combination of inflammatory & osteo arthritis so I went back to the Prof privately.

I do feel it is worth seeing someone you trust with your care, but I do worry about what I am going to do in the furture when the insurance company won't cover me!

Good luck with with you decide!

[heatherp]

I've also been told BUPA will stop funding my treatment when I am stable, but after almost 18 months that's still not the case! Funny about a year ago I suggested to my GP that I transfer to the NHS as I would possibly still see the same rheummy, and he said that I should stay on BUPA for as long as I can - in his words I would find the NHS 'a very different experience'!! Maybe he was just saving the possible NHS costs for someone else!

I do think that if BUPA stopped paying, and if I weren't at anti-tnf stage, I would possibly try to continue to pay the appointments myself (my consultant is about £140 for follow up). He has been great and if I'm in between appointments with questions that don't warrant another appointment I simply email him and he is pretty quick in responding! So really worthwhile...but as with all these things, what works for one isn't necessarily good for all!

[Hidden]

Thanks all - I will ask my GP tomorrow. I may approach things with a slight hint of this idea of going private rather than saying I've got as far as finding a private cons and phoning them up today. Been sleeping terribly and everything is hot and sore in that tingly, sherbert way just now if that makes any sense? Hope I'm with it enough to think tactically as my GP is on the health board and I want to work with him not around or against him. He knows a hell of a lot more about the situation up here than i do and frankly I only get a ten minute consultation with him so I just need to make sure I talk about the things that I need to talk about to sort myself out for the week ahead - mustn't get bogged down with politics. Pauline your story makes me feel lucky to have had an NHS diagnosis at all as I'm pretty mild as well compared to many on here. It's when I think of this that I get all unconfident about being too pushy though. TTx

[helixhelix]

Tilda

Did you know that you can ask to book a double appointment with your GP? It also signals that you want to be taken seriously!

I've read everything about people who've got a mix of private & NHS care - and I'm not sure that it's just a question of whether you have a "good and decent GP would surely be pleased that they would be given advice as to what meds etc you require, along with the knowledge that he/she is being given the best advice as to how to manage your condition". I think it's also a question of medical responsibility as although your rheumy is responsible for your overall care, the person who signs the prescriptions is ultimately responsible for them being the right things for you. I know that a couple of times my GP has said that it's lucky she knows my rheumy so she doesn't have to wait for paperwork to catch up before changing my prescription. So a big distance between consultant and GP could be a bit awkward.

i did at one point investigate private insurance, just in case of emergencies - and would have been £3k year, and only for flares!

cx

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I had abandoned the idea of even looking at insurance so at least that means I was right to thanks Polly! Yes I think it could be quite awkward re private/ nhs too because I spoke to my GP friend about this and she confirmed that in practice there can be lots of hiccups. Some people have to opt for private rheumatology because of the waiting times and last minute appointments which are impossible if they work offshore for example. The objections for GPs might be mostly about practical considerations which may have a knock on impact on the patient's care and medication.

Ages ago when I was still being referred I had a phone chat with my GP and he broached the subject of me going private but said he couldn't recommend it because of distances and many other factors that we didn't even touch on.

I know I should have booked a double apt but I made this apt a month ago and he gets really booked up weeks ahead so it's too late now. The woman GP has just put me in for double appts herself when she thinks this is going to be a big one but i don't think my GP does this. Hoping I'm wrong and he anticipates it might take longer to work things out but if not I'll just have to ask if I can come back another time I suppose. He's brilliant at sticking to his time schedule - does something clever with body language and his computer screen and breaks eye contact and I'm really not the type of person to ignore these things! TTx

[helixhelix]

Well you're younger than me, and live in cheaper place medically speaking, so may not be that much - but still it's a lot to contemplate.

Anyway, go get tough with your GP - you want proper care & you want it NOW...

Px

[cathie]

I hope you get a clear answer whi h will inspire confidence. Do let us all know what happens. Its tantalising to think that there might be a fount of knowledge out there which will help you sort things out. I've never found this but have found people who inspire more or less confidence.

It's just started snowing in earnest and a very wet cat has just run in to the kitchen

Xxx

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Thanks - no clear answers yet but will now blog to say how GP visit went. TTx

[Jetblack]

Hi Tilda,

It is such a shame you have to go down this route, but if you get the help you so need then go for it. My friend is seeing a private endorcinologist in a few weeks, to move her treatement forward, and the the GP will see her still. I hope you get the answers you are looking for and get your treatment moving forward and you get the support you need. Take care and would be interested to know how you get on x

[eve5]

hello again tilda

your post has raised many quandaries.

I am under what my rheumatologist calls "shared care" - also within grampian so the same would probably apply to you. I attend albyn hospital (privately under insurance but you can pay as you go) but all the blood tests and monitoring is done at the GPs surgery and therefore nhs. So far my dosages have only been adjusted by the consultant, though I did get the feeling at one appointment with the GP that they could also recommend/prescribe a change of dose (I am on methotrexate). The only downside is that there is no nurse at the hospital but arguably it could be said that this is also an upside because all my information comes directly from the consultant.

because of this shared-care situation I have been encouraged and have been given more of an opportunity to understand the disease than I think others may have. My DAS has been discussed during the long appointment times and the letter that is subsequently sent to the GP is copied to me. I do not feel in way that I am kept in the dark. I ask for copies of my blood test results from the GP so that I am able to go back to the consultant with them - the downside for the consultant is that he is not linked to the nhs computer and so this is the only way to get the results. At our local support group yesterday I was amazed that many of the members hadn't been made aware of their DAS score at any stage in their care - their consultants not discussing it with them. though equally my gps do tend to tell me not to worry about the figures from the blood tests when they are raised, so to a small degree there is a little discouragement here.

The consultant made it quite clear at the outset that he was the one who would make the diagnosis and recommended treatment and the in-between appointments stuff including bloods and medicines were the responsibility of the GP. however, I have on several occasions, more so at the beginning of my treatment, emailed my consultant and every time had a reply the same day.

the idea of the nhs is amazing, free healthcare for all. and the socialist in all of us says we should wait our turn. but the reality is that with every new pain we really worry that we are doing irreversible damage. if you decide to go privately and you feel you need to justify this, it is reasonable to say to yourself that you are making the nhs waiting time just that little bit less for someone else.

it would possibly be a little uncomfortable for you to face your consultant if you decided to get a second opinion. but really is it such a bad thing. still having wobbly moments myself I blurted out to my husband yesterday that ra takes 90% of my life - then I was struck with how awful that statement was. But it is kind of true. I am either sleeping, feeling tired, depressed, reading about it, writing about it, reading on HU and NRAS blogs - I think it is completely understandable if you are not getting the care you feel you need. Your consultant, if a reasonable human being,should be able to accept this, and with the risk of sounding a bit pompous, perhaps even learn something from you.

I have always thought it is a terrible pity that to get a first opinion on anything let alone a second opinion, one always has to go through the GP. I see this as a gap in the market - any entrepreneurs out there to set up doctors direct.

good luck tilda with whatever you decide to do

.....eve xxx

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I agree about having to go through GP in some ways Eve although mine has been great I have to say and he helps me navigate the complicated routes and knows much more than the usual GPs because he's on the health board too.

It's very interesting what you say about the shared care. I know that happens because my GP friend told me she'd done it with several patients but found the computer thing quite hard because the private practitioner would make demands that weren't really anything she could control as the patient worked offshore so wasn't always able to have his monthly bloodtests but the private consultant seemed not to be aware of or accept this situation.

I do find the situation very trying but the thought of having to pay and travel to see someone everytime is equally daunting really. If no joy by Tuesday I will speak to my GP and explain that I'm thinking this is really unacceptable and I am seriously considering going private. Do you mind me asking why you opted for private rather than going to Aberdeen for your rheumatology? It certainly sounds a pretty good solution for you to be sure. I just like the idea of not being rushed in and rushed out somehow - or being seen at all would be good from where I'm sitting. I naively thought this time a year ago that if I ever got a diagnosis of a dread disease (does RA count as one? - it did to me when I first googled it!) then I'd be given priority and flown down to Aberdeen to be diagnosed and treated. How stupid of me was that?!

If we move away one day in a few years time though I'd rather be in the NHS system so that I can be transferred and can see that might be a problem if I come off the NHS rheumy list, even briefly.

I know exactly what you mean about how much time it takes up. I get a surprise everytime I'm contacted re my job as an artist now - and find myself thinking "don't they know I have more important things to be doing or thinking about?"!! But really how would they know it's daft - and I don't want to get to the stage where I've been such a career dipstick that I've lost momentum as an artist for RA! I think my GP was right to say this is probably about RA but I also think it's about my situation here re NHS rheumy and lack of specialist care and I think he knows that too. At least I am on MTX though and do have my GP fighting for me. TTx

[eve5]

hello again tilda

totally agree with you about the travelling for appointments, apart from the expense you really do need reliable care on your doorstep. it could be that you need to see your consultant urgently with a flare and the last thing you want to do it have to jump on a plane to do so. I get a great amount of comfort knowing that the care I need is close at hand both with the gp and consultant rheumie.

although we had private medical insurance in the uk, strange as it may seem it wouldn't necessarily have been totally obvious to me to take this route. the reason it did happen was that I'd been having a swollen finger or two for a few months (in additional to sore feet for many many months but never made the connection thinking I just had plantar faciitis) and went to the gp in holland at the beginning of 2010. he correctly did an anti-ccp test but incorrectly gave me the result as being negative. it was not until some six months later when very painful hands and wrists took me back to the surgery and he said "oh, in fact it was positive". he didn't seem too bothered and said most likely it would be okay and wrote me a non-urgent letter for the rheumatologist, the appointment was for another three months down the line. having read up about ra, I came back to the UK and took advantage of the private medical insurance we had knowing that getting an early diagnosis and treatment was crucial.

I think the idea of a second opinion must occur to many of us as I still find it difficult to believe that I have this awful disease and another consultant would say , "oh goodness me he's got it all wrong". I don't think any harm would be done in making an appointment to have a one-off consultation when you were next down south but that doesn't really solve your current dilemma which as you say is partly to do with your location and partly the RA itself. I can understand that you would have expected all the stops to be pulled out for an urgent diagnosis and for you to get the attention you needed, I don't think it is silly at all that you expected more than has been provided. After all if your disease is allowed to get to a level where operations were necessary that would cost the nhs a whole lot more cash.

everything seems to take a long time with ra, I means in terms of the next appointment, seeing if the drugs work, it is not surprising that we get a bit frustrated, but you are absolutely right ra must not rule, I just hope one day I can reach the point where I say it and mean it.

.....eve x

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Yes you've got it completely Eve! I'm really not happy with having to go through this everytime I flare, react badly to a drug or feel the disease is still active and crippling me slowly but surely. This is contributing hugely to my mental state I admit.

The most sensible thing I can do is relocate I believe but can't do that until the boys are finished with their schooling. I think probably the best way to go would be to find a good NHS/ private rheumy in Edinburgh where we may well choose to live and explain my situation short and long term so that if we do move I could then get onto his or her NHS list. But that kind of assumes that a) we will go to Edinburgh and b) that I can afford to-ing and fro-ing for the next five years, not to mention the money it will cost.

I think I'll just have to explain all this to my GP at some point and see what he advises but hope in the short term he gets my existing rheumy to instruct new meds or maybe even see me.

TTx

[eve5]

orkney must be a beautifully inspirational place for an artist and continuity for the boys at school is another plus for staying put. the problem of course is having this diagnosis - life was so much simpler before.

yes, absolutely get your existing rheumie to see you, though I know how difficult it is to fight for yourself when you feel pathetic (me, and possibly you too). have you tried writing a letter?. failing all that you are more than welcome to come and stay at my building site of a house just outside aberdeen if you could get seen more quickly that way.

.....eve x