Hmm so have odd dilemma - can anyone advise or maybe suggest who to ask about this?
Somehow I ended up with 2 good consultants at different places! v lucky I know, and I thought it might work out well, even if it is a bit greedy lol. One is at RBH and the other is a really good asthma cons who is not NHS officially so has more time for me/some good ideas.
It was going ok seeing two consultants even if a bit odd (not even as though I'm that bad, just weird!)
But now - after listening to what I said about having better control sometimes but it being too much up and down - St Mary's cons wants me to try 40mg of pred for 3 weeks to see if that knocks things on the head. If it doesn't, he says there are limited options. He does think it's asthma but very atypical.
Then went to RBH on Mon as they wanted to see me when bad and I had a bronchitis thing - though wasn't as bad as it had been when I got there, of course! They said 30mg pred short course, so cue confusion - I told them I'd been prescribed 40mg for three weeks by other cons. They don't think it's asthma - well maybe they do, I'm not really sure tbh as they said yes, some asthma in letter but now no?!
On Monday I saw a new reg at RBH who wants to get things sorted for me, but says I have to choose RBH or St Mary's by the time I go back to RBH this Tues - both are good but given the set-up etc they can't work together and I need consistency, which is a fair point.
Only problem is - they both have pros and cons but also a completely different approach to things and apparently different ideas about what's going on, and as they are both very good at what they do I really have no idea which of them is right!
Sorry for ramble but while I know I have to make the decision myself in the end, I feel like I want some advice...can't work out if there's anyone who'd be able to help though! Anyone have any suggestions?
22 Replies
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Hi philemon. Personally I would go for the one that is closest too your home as travelling is not fun when you just want your bed. I had this a while ago and I stick to my local as that is where I land in emegenicies. Not high quality doctors but I get consistant care and I am close to my home.
Plumie
Thanks Plumie! I agree travelling is no fun when you want a bed - did it Mon and yesterday when feeling rubbish with a cold/fluey thing and RBH were too full to offer me an actual bed in the day unit tha I could crash on for a couple of hours. Sob.
Problem is, both of them are in London, not huge difference in travel times, and I don't live there, so either way it's a trip! There are good reasons for this (specifically: my local was no help at all and I asked to go elsewhere: went to St Mary's, they referred me to RBH) but it means the decision can't be made on 'who is closer?' grounds. Also, because I'm not 'bad', just awkward, I don't tend to have emergencies - if/when I ever do I will have to brave my local anyway.
How very sensible of the RBH suggesting you choose.
As none of your current 3 consultants particularly think you have asthma anyway why don't you go with the one that is most likely to look/find out what is wrong as it interferes so much with your daily life. Maybe then you can move on?
For example choose the one most willing to investigate other things apart from asthma, lets face it you have now been tested most thoroughly for asthma many times with no conclusive findings.
Sorry, forgot to say thanks Picalilly!
Well, I did wonder when/if it would be an issue. But given the current disagreement re 'how much pred?, it does seem to make sense to choose one or the other like they say. As I said, it was something of an accident that I ended up with two anyway!
One of them - the St Mary's one who like RBH knows his stuff - does actually think that I definitely have asthma, so it's not just me obsessing. RBH are not sure - this isn't just me, they seem to say different things at different times (argghh) but my letter certainly said I probably do have it but there may be other things going on in addition (not psychological, just 'umm not sure wtf etc'), but perhaps they'll come up with a 'this plus this' and work out how to deal with the various bits - hard to know atm.
So yeah, it would make sense to choose whoever is going to sort it out properly - it's just difficult for me to gauge who might be right and have the best solution long term so I can 'move on'. I'm not under any illusions - I know many people are much much worse off than me and it restricts their life far more than it does mine, but nonetheless I would like to get it sorted if I can.
Y hello there!!
A little confused, is St Marys not classified as your local!?
Only because I still have my local even with being under heartlands. I have just dictated to my local that they are now only to keep an eye on me in between heartlands appointments and they are not to alter any of my medicines! ok so they werent all that happy but it helped with understanding!!
if the above isnt the case for you, I guess for now you could always stick to RBH s they are the specialists, and then when you are fading out of not needing to be with them so frequently, you could always ask St Marys to continue to look after you.
if you do stick with RBH make sure that you get just one person looking after you as the mixed thoughts arnt helping you (i did that whilst up in heartlands, i agreed that on a daily basis a diff doc can look at me to make sure i was ok, but for any medicine change etc they were to leave me alone. )
to make sure also that you can keep st marys attached to you and that you wont have to go through gp again. could you mention to st marys that for the moment you want to see what investigations and answers rbh come up with, and could they just see you every 6 months for an update and to make sure your still ok (a bit like what my local is doing for me)
I really hope the above make sense...it does in my head lol (and ive left my glasses up staris so i apologise for the typos in advance!!)
xxx
lol you are doing a lot better than I would be without glasses/lenses! I'd have my head stuck on sideways and a massive headache by now...
This is a very good point - actually several, thanks! St Mary's IS technically my local in the sense that they are not a specialist hospital and they're replacing my local. I just accidentally ended up seeing this bigshot prof who happens to be based there and does clinics because he wants to...and I would imagine that normally RBH *would* just tell the local what to do. But as he's on a par with them in expertise etc, just not based there, that's not how it's been working. And he doesn't really agree with their approach I don't think, though he does of course know them and they know him.
I wonder if he would agree to the every 6 mths thing as that sounds like a great idea - though actually they are v quick and efficient and I can generally get appts when I want, much more so than RBH (they are not the best with admin...), and I get more time with the cons at St Mary's. Drawback is if I get stuck in between appts, RBH are way easier to contact and they have more back-up. I am under one consultant but I found this specific reg I saw on Mon who works under that cons was a bit more proactive and in depth (so far) than the cons - so not sure what happens if they don't agree, presumably the cons wins! Certainly I don't want to be the registrars' 'parcel' but it's hard to know which of them you'll see, even if under same cons.
There's also the whole physio issue - I'm having physio with RBH and hoping it will make a diff so it may have to be them if I want to have that.
Thanks so much Charlie and sorry for all my rambling - it makes so much sense when you say it but you know how sometimes you need someone else to say it, and to bounce things off? Not something I can really run past family and friends so thought I'd be able to bounce it off you guys. Plus my brain is not working at top efficiency right now lol.
I thnk you should go with the specialist centre ... They will have up to date knowledge and resources and will give a better diagnosis . Where as the less specialist person with his limited knowledge may give a false diagnosis due to lack of knowledge and expertise .. Maybe that's why he thinks you do have asthma where more specialists medical staff are questioning this diagnosis ....
Thanks GUssypoo. I may go with RBH, but not for that reason. The issue is that both consultants are experts in this field specifically (and somehow I ended up with both of them!) - the St Mary's prof is at least equal in expertise and knowledge to the RBH consultant, he just doesn't happen to work at a specialist centre, and has a different approach - so any difference in diagnosis/opinion is not down to him knowing less.
If he were just a 'normal' resp consultant like my actual local one was there'd be no problem - it would be a no-brainer to go with the experts at RBH and I wouldn't need to be asking this, but as the prof is also an expert it's a little more difficult! May come down as you say to the resources.
I would go where you feel you recieve consistant care. Plumie
Hi Philomela, I don't see why you can't be under both, but with one consultant being the lead, with the other keeping a watchful brief as Charlie said. I personally didn't get on all that well with the Brompton and when I went back in Sept for follow up I did not get to see Dr MG but saw his registrar. I was not all that happy with this as he gave me information which was just plain wrong and contradicted what Dr MG and Dr Hull?? ( the chap with the exercise bike) told me in August. I never got referred to physio and when I phoned to chase it they told me that they had never heard of me. I got my follow up letter from my August admission this week (2 months late). I was meant to go up when I was unwell, but I have been unwell following a cold this week and quite frankly was not well enough to spend 3 hours travelling there in order to sit in a day ward for a couple of hours and then spend another 3 hours travelling home. My feeling is that as we have perfectly good consultants locally, why would I do all that to see a registrar. The decision has to be yours to make and sorry about my rant, not having a good time at the moment. If you can I would keep your options open as much as you can. Best wishes.
Since St Marys isnt really local and they referred you i would stick to rbh.... and got to remember they see people with asthma unusal every day.. so they know what they are doing they also up on the the research so might be able to give you more up to date knowledge and know whats coming
Thanks! valj, really sorry to hear you're not having such a good time of it and they're being rubbish - it does seem to be variable with some people finding them great and others not so much like you. I've had a middling experience so far - the new reg I saw is good (maybe a little more proactive, dare I say it, than Dr MG?) but the problem with registrars is you can't be sure of seeing the same one and if the cons disagrees then where are you? This is what worries me if I go with them though they do seem to be talking to each other at least (including Dr H), but get mixed messages about what they're thinking. And agree re the feeling unwell and travelling, I wasn't that bad lungwise (typical, when I was going there for that reason!) but did feel down with the lurgy and wanted to be in bed at home!
But I really do hope that for you, SOMEONE can sort things out soon and be more organised - can't remember if you had thought of Southampton instead if local are not helpful? I would be ranting in your position too, must be so frustrating!
Bird, thanks - it was a little complex as reg at St Mary's referred me to RBH then next time I randomly got the bigshot prof who didn't think I needed it! I'd hope like Valj says I'd be able to be under both but don't know if egos will allow if they both want to do separate things. However, I will ask - given limited options offered at last St Mary's appt, even though the prof is good and listens and gives me more time I may go with RBH and cross all fingers that they are having a good day with me...
Could you not just stay on the st marys books but not necessarily have appointments (unless needed). This is what happened with me when I went to uni (6 years ago now!) as it was more useful to have a team where I'd be most of the time (and ending up in hospital lol). In theory I think I'm still on the system for my local back home so if I wanted to see them I could phone sec and ask for appointment, not that I've seen them for years as I'm now based and work in notts and have an amazing team up here! That way you could persue rbh for the time being ( as it may be more difficult to get back into their system) but still have the option of st Mary's later down the line?
Sorry if that sounds rambly ... Thinking and Typing whilst nebbing is tricky!
B x
Thanks B - no that does make sense, the whole thing is confusing me! Crossing fingers that I can remain on good terms with St M then so that they are there if I need them again. The prof is very good but also very sure that I do not need RBH as he can handle me...I was not cut out for this sort of delicate diplomacy which is what it seems to be coming down to. I know my rights etc (if I didn't I'd still be struggling with my local!) but also appreciate what both lots have done for me.
Sorry for all the rambling! Head is not really screwed on properly atm...why do colds mess with brains?!
I'm coming a bit late to this but I think I would stick with RBH over St Mary's for a couple of reasons. It seems to be equally easy to get to both hospitals but from you have said RBH are easier to contact (which is crucial when your sick, nothing worse than a crisis and no answer from the doctors) and they are giving you physio. Also in the future if the is anything you need it might be easier to be at the Brompton to access those services.
It might be worthwhile explaining to the consultant at St Mary's that you have had to make the decision between them and the Brompton but if they don't mind you would still like to check in with them from time to time, just as another opinion.??
Saying that, it also is a matter of who you trust best and to some extent who you get on better with.
That was probably no help really but in your position I think (from what you have said here) I'd go with RBH but try to stay on as good a terms with St Mary's as possible and see them occasionally.
Thanks Sarah! That does make a lot of sense, was kind of what I was thinking but useful to have it laid out like that and have someone else point it out.
Defo agree re getting in contact, is one of the things swinging it for me as because I am a bit weird even if not bad, I don't really know what to do if in between appts; my GP is fantastic but there's a reason he referred me!
Im puzzling over why you would need two consultants.. if you are getting a good service from one consultant why would a second one be needed? I cant see how this helps continuity of care, particularly if they are not like minded. And if they are like minded, then there appears to be little point in having them both..? I would simply stick with which ever one you prefer in terms of medical care, approachability and accessibility. No one else can make that decision for you
Lynda
Thanks Lynda - you're absolutely right, I don't! But there was something of a mix-up and somehow it happened, then I kind of let it as I wasn't really sure. Some people do but nit in this set up so I did need to make the decision, was just hard to know which was better! But thanks for everyone's advice as think it's clearer in my head now, and have to tell them tomorrow anyway.
Who have you decided to stick with btw?
You may find that before you finally decide . A hospital consultant may make the decision for you . It's obviously had a clash if interest and care over your management . To prevent this from happening again one may discharge you from their care . Before another clash occurs. Imagine if they both did it. It's took you long enough to get one consultant to consider the diagnosis of asthma never mind the 2 that you are under now ....... Usually when under 2 consultants it is a result of a junior referring to a senior for second opinion and further management . So the senior automatically asses control and final decisions on treatment and management . Think your situation needs solved sooner rather than later and before any more consequences occurr
I agree with Gussypoo.....sorry but I think you really need to be under one consultant to get a firm yes or no about whether you have asthma. As you've said although it's annoying and you sometimes feel unwell the crisis situation doesn't apply here so I think I would go with the specialist tertiary asthma unit myself. They can give you a definite answer at least.
Thanks - I had to decide today anyway! And it turned out to be simpler than I thought esp with the physio...d'oh! Thanks for advice everyone, turns out this wasn't that complicated but my brain seems to have been on holiday this week and in any case it was useful to think it through! Definitely a bit of a mess so surprising really I've only just had to do it.
Reg did say I'd be a 'very funny-tasting soup' if I had two lol...already feel like one at times with the confusion.
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