I had my referral letter through last week - appt at the end of Jan, not too bad, but didn't say who it was. Today I got a call from my GP's secretary - it seems she was chasing it separately.
Turns out I am down to see the same consultant I saw last time - the one who didn't listen to anything I said, went on the (incorrect) opinion of the first consultant I saw and said there was nothing wrong with me! Really don't want to see her again, and asthma isn't really her thing so in any case I don't think I'm going to get far with my rather weird variety of asthma, even if she paid attention to what I said.
Rang the nurse on here who was really helpful; she said in my position she wouldn't want to see that consultant again either, and I should have had more choice (I never actually saw a Choose and Book form so didn't really get a choice of where to go) and to contact the surgery and say I want to see someone else.
I've also emailed my GP who has generally been great (except for the no-choice thing. I suspect it was the hospital who dumped me with the same cons though). Hopefully he will sort something out, but I'm not sure how much he can do and I bet there'll be a huge wait...arrghh, just before Christmas not best time for this to happen!
Sorry about kind of ranting after all...also, does anyone know a good way to actually find a consultant? For some reason there don't seem to be any asthma specialists in Oxford which seems odd! On the advice of the AUK nurse I tried NHS Choices and Dr Foster but the NHS one is out of date (a cons is listed who I know actually died a while ago) and Dr Foster gives about 400 names when I try to widen the search, including names in places I can't really get to, plus it doesn't really have that much info about them.
this is tricky...is their a specialst centre nearby you? Ask to be referred there? Or someone listed with a general interst in asthma I looked on NHS choices and then googled the consultant...
I am lucky in a way we don't have choose and book we get who we are lumped with!
Thanks! I have looked at Oxford a bit more closely re consultants - there appear to be NO asthma specialists and no asthma clinic!! Very odd given it's surely the most common resp complaint.
Normally I'd take whoever but this is the third time I've been referred and I can just see it is not going to work if i see the same cons again. I really need someone who will listen and who knows asthma isn't always textbook...if there are such consultants...
Philomela I totally sympathise with you, im on my 4th cons now and feel like im getting nowhere apart from around the country with hospitals, thankfully im willing to travel, but fed up with being push around! I just went on Dr Foster and read about the cons that I have been under, two of them didnt even exist and the other two dont even have an interest or specialise in asthma!! no wonder im getting know where!!!
I hope you manage to get some where soon, are you willing to travel far? maybe consider areas in London?!
x
haha Charlie I think I know what you mean but was thinking no wonder you haven't got very far seeing a cons who doesn't exist lol! Sounds like you have definitely been given the runaround, I would be pushing for a specialist difficult asthma clinic in your situation though it sounds like you have been trying to make moves in that direction.
I'm definitely considering looking further afield and London would probably be best as I go there quite a bit anyway. I've told my GP I'm happy to travel a bit to find the right person and mentioned London; I tried to look up the consultants in London but Dr Foster gives millions of results and I still don't really know where to go (results also include my first cons who may be a top asthma specialist but did me no good at all). Don't really feel bad enough for the Brompton or anywhere like that - it's not like I've been admitted, I'm just weird! I'd just like to go to an actual asthma clinic - have only been to general resp - with someone who understands it's not all about the textbook.
Hope you find someone more useful soon so you can get some control.
lol I just re read what I put and realised I should have wrote it a little more in English language rather than Char-language!
yeah ive been pushing to go to the difficult asthma side of things, I should have a result and im being moved to the ""in house"" difficult asthma clinic, but I have a funny feeling there all the same cons just a different clinic. and ive already told them, if they cant managed to play god I want to be refered!
It is pretty hard if your not the ""textbook"" asthmatic, but then again, who is :S
I dont think you have to have been admitted into hosp to go somewhere like the Brompton, they can also sort out the general feeling crap and cant be managed locally type asthma to.
currently the only control I have is the when I take my meds, the rest as like a whole other department store lol!!
fingers crossed you get some results to, sorry I cant help with finding a Cons for you, tad hard living the other side of the UK
xx
I dont think there is such as thing as a good all round consultant as its a personal thing... if there isnt one is oxford (I cant beleive there isn't!) then maybe RBH is your best option or Heartlands in Brum...
It does take time for the consultant to pick things apart sometimes and sometimes its worth sticking with a consultant even if the first appointment you feel went badly... sometimes they do speak the truth even if you dont agree and sometimes to go along with there ideas and accept it
Hmm, B'ham might work, is about the same distance by train but I am more likely to be in London anyway. I know what you mean about Oxford, I can't believe it either but if there is one they're in hiding, and there definitely isn't an asthma clinic - I looked on the clinicians' page and none listed.
I wouldn't mind if it took a little time. What I do mind, and why I feel it won't work with this cons, is when they seem to be listening but you realise they haven't taken anything in and just aren't really bothering. I just feel she wasn't really putting in much effort with me or even trying to pick things apart! It was like she'd decided pretty much right away what was wrong and was just going through the motions with everything else. She then said there was basically nothing wrong with me - even when a half hour shopping trip walking (necessarily) very slowly left me exhausted - and if I'd left it there and my GP hadn't been willing to disregard her opinion and try some medication, I probably wouldn't have been able to start my masters.
So I really don't think it's going to work with her however much time I give it. It is a personal thing but I would like someone who I actually feel is listening and making an effort.
Go to brompton. Get your GP to send a referral, then they will be able to tell you once and for all whats going on and with the suitable evidence to back it.
If you have already seen two consultants it's unlikely your going to get a different opinion from another consultant as as far as I can tell you've had all of the most likely tests, unless you go to a specialist center - Brompton. Alice
Philomela- are you just looking on the internet for information? I've looked for Aberdeen and it is out of date as the 'difficult asthma clinic' doesn't appear to exist. It might be worth a phone call to the respiratory secretaries at Oxford to see if there is a specific asthma clinic and if so do they take direct referrals from GPs (not all will).
I can see why you don't want to see the same consultant again, as you would have a negative view before you even enter the room!
I'm not sure how to find 'a good consultant' it can sometimes be about who you get on well with. Does your GP know anything about the consultants in Oxford and their reputations?
I am being managed by my local consultant with consulatation from a specialist centre. I have been with same cons since I was 17...some times it isn't good but most of the time he is okay. I feel that we have built a relationship and I now feel that I can trust him and his team. It isn't always about what the consultant does my GP is fab and initiates new treatment and plans. My resp ward is amazing and they have given me the confidence to ask questions, make demands and get the treatment I deserve. I think that sometimes chasing a reality that doesn't exist is demoralising. That is just my opinion
Thanks guys for all the advice. I've taken some time to look at some sites I really ought to have looked at before (brain fog...) like NHS Choices and the RBH's own website.
Definitely does seem that a) I ought to have been told more about choices (or at least been more proactive and found out more - but I guess when I thought it might not be asthma the local people seemed as good as anywhere) and b) the RBH as you say actually does sound like the place to go. I had been associating it with people who are much more severe than I am but from what you all say and the website it does seem it can be just awkward asthma (which I definitely have, even if it's not landing me in hospital!) Also specifically mentions steroid-resistant asthma which my GP thinks is a possibility as I just don't respond to them.
I don't know if my GP does know much about Oxford resp consultants - though he knows more now he's seen me lol - don't think his opinion of them is that high atm but he didn't seem to know a specific person to send me to. Maybe he can find out more about the asthma clinic, if there is such a thing - I did look on the page for doctors rather than patients but it may well be out of date. I'm waiting for him to reply to my email (which he will, I just don't know when); I'm reasonably certain he'll be helpful as he was very understanding about my last experience with this lot.
Honey, your arrangement sounds great and I know what you mean about GPs. Mine is generally very helpful and I wish I could just keep on seeing him but he says he is out of his depth and really does want some specialist help with me; I know though that he's great about keeping up with what's going on.
Still stuck, no reply! I know this is probably because of Christmas and GP possibly being away (he's here this week I know) and I should just be more patient as it hasn't been that many working days. Hope email hasn't been lost amid other things...am wondering how long to give it if I don't hear again. Don't want to nag esp with the break etc but don't want to leave too long...perhaps next week if I hear nothing, when things are sort of back to normal.
Anyway sorry, this is a bit pointless. Just feeling a bit frustrated I guess, I have enjoyed Christmas but everything does shut down - except my chest and the dizziness which have both been acting up, and I guess I want to know I'm closer to trying to get something done about them. But I know I am very impatient lol. However at this rate I will have no nails left...
Getting somewhere?
Sorry to keep bumping this up. Seen GP today who said he wasn't sure if he'd be able to refer straight to Brompton as it's tertiary - I said the website had suggested he could but not sure how it would work in reality, and he's looking into it.
Mainly bumping as he also suggested St Mary's Paddington and Northwick Park - was wondering if anyone had any experience of either of these?
Does that mean you will definitely not be seeing the previous consultant?
Jac xx
I think so. He was a bit doubtful at first and said was there anyone else in Oxford I wanted to see, but I think he understood when I said no-one here seemed to do asthma, this was my third referral and I wanted to get it right this time - I also said London made sense as I go there a lot anyway.
He doesn't have much opinion of the local lot after last time tbh so I think he understands my reluctance!
My husband's account of his stay in Northwick Park is unrepeatable, but it was nothing to do with asthma so couldn't comment on what their resp consultants may be like.
Ooh good luck Philomena, maybe we'll end up in Brompton together? I know the feeling of a consultant not taking on board what you say or particularly helping much - mine has suggested stop/reduce meds leading up to worst time of year in hope still ok but actually seems to want me to become acutely unwell to get urgent spiro. at the hospital (GPs no good) that will be worse and hence prove asthma. As you say in regards to your masters, I don't want to risk work esp with sick leave policy.
In regards to finding a good consultant, Choose and Book is pot luck unless your practice has selected a particular consultant they know about hmm think I lost out with my respir. cons. NHS Choices and Dr Foster can be out of date as are hospital websites. Even if a consultant is well published doesn't mean they are much good to see in person. The Brompton I was told is definately for me as like you awkward asthma & not ideal/sustained response to steroids. Apparently the wait currently for new patient appointments there even considering out of region referral should be no longer than late Feb/early March.
Interesting to hear of your consultant mentioning to take you off everything, meds wise. My consultant was throwing that idea up a few times until about last May when he fortunately stopped. It scares the life out of me to think of not having any meds and like you say the thought of having to go off sick because as we know, that will happen. Would they pay our sick pay and secure our jobs? I understand the theory behind such a suggestion but the consequences for us personally would be unbearable.
Jac xx
spookymilo, I have bad associations with Northwick Park but only because that was where the disastrous drug trials were (I ended up finding out a lot about them in my last job). Sorry to hear your husband didn't find it much good either - I hope they've moved on from whenever that is!
TJ, know exactly what you mean about people who are good on paper - my first cons in London was very senior, top asthma specialist, ought to have known what was going on right? Perhaps he would have if he'd ever read my notes or the letters from the physio.
My GP hadn't thought of the Brompton; he did seem a bit taken aback by my suggestion at first but I emphasised I know I'm not severe, I only thought of them because of what you/your cons said and after looking them up and seeing that they do 'awkward' too. I wouldn't consider B'ham for instance as I looked them up and found they seem to focus on brittle asthma. Will let you know if/when I go there, would be funny to end up in same place lol.
EDIT now I've seen JF's post - definitely agree they sometimes don't think about the impact on us so I'm very glad you're not taking up that suggestion re meds, TJ - what planet is your cons on?! I could not get across to my previous cons what it was doing to my work and social life not having any medication or help for months. I was extremely lucky job-wise; anything more active than sitting at a desk all day I wouldn't have been able to do, I would have had to go off sick. I got exhausted one day just walking to the printer a few too many times - my colleagues couldn't understand why I was so bothered about it but the next day was a write-off.
Sorry it's a bit late!
I'd say go with Brompton, but be expected to wait. I'm fairly severe with lots of admissions and got pushed right to the front of the queue, and that was 2months!!! (and I was already a paed patient).
Also I'd be carefully about the terms you use around them. Saying something like i have steroid resistant asthma probably won't get you too far! They tend to diagnose that with bronchs, and lots of tests, so saying that when only your GP's told you probably won't go down well! It took them two months and a whole battery of tests to find that with me. With them, as hard as it seems, you can't be the expert patient - you have to let them take the lead, or they do get a bit funny with you.
It's also worth baring in mind that they will speak to your last consultants, review test results and read through ALL your notes! But they do make a really fair judgment, I was once told it was all in my head, and altthough they looked into the possibility they weren't set on it. They did all the tests, and decided it was asthma. So there really fair, but don't be suprised if they consider what the other consultants have already had.
Brompton can either be amazing, or for some, awful. You just have to stick with it, and work with them, whether or not you like/believe what their saying.
Good luck!
Not late anzharry - thanks! Though I will try to keep my reply down, I feel like I'm writing loads on this thread and rambling on!
I'm confused by the waiting times thing as they seem to have told TJ it wouldn't be that long. Were you doing the full-on difficult asthma protocol or just outpatient (I don't think I'd be doing DAP, no idea what happens with that anyway but it seems to be for much more severe cases).
I'll take all that on board. I don't really know what I have tbh except probably asthma, hoping they can tell me! But I definitely wouldn't use the terms 'steroid-resistant' with them, only mentioned it on here because they used the term so was saying why I thought it might be a possibility. I'd just say I hadn't seemed to respond to steroids.
I'm generally much more careful around doctors etc than I would be on a board. I'm always aware you can't get expertise from the internet etc so I try not to bring stuff up that I've read unless I absolutely have to, because I'm worried about sounding like an idiot if I throw medical terms around and they're wrong. Also aware that I sound like a major hypochondriac if I come in saying 'I think I have x', which is hardly going to go down well so I try to keep it all to myself and only mention stuff if no-one has (like I felt the need with previous cons to mention all the singing I'd done because they were just banging on about my amazingly high PFs without thinking about why, so thought I should mention it as I know it can boost lung function)
Anyway thanks for tips and warning - suspect it's not going to be a barrel of laughs anywhere I go and tbh I am massively nervous about the whole thing at any hospital in case I end up back at square one with no meds, but will have to work with them.
Thanks for the info anzharry, that wouldn't surprise me, I was told the wait for first outpatient clinic appt but know people wait some time to get in there esp for longer admissions after difficult asthma protocol initially.
Jac & Philomena, lack of consideration impact on work etc esp. surprising as we work in the same establishment so he should know it's not a desk job.
Well to kind of put it into perspective when I was at kids at the brompton I was often seen fortnightly, and if I didn't feel well could ring up and get squeezed into a clinic. I had my transition clinic at the end of October and the first avialable appointment was beginning of jan, and then to redo my DAP it's the end of feb! But some appt's may come through quickly it depends on who your seeing, cancellations etc. etc.
Also Philomela, it may be asking about the cough clinic Brompton do. If there querying the asthma diagnosis, but you have a lot of coughing (if i remeber right?) then that may be an idea. It's the same doctors and things, but they focus less on the asthma bit?
Thanks anzharry for clarifying, guess I will have to wait and see - might not be Brompton anyway, though am hoping my GP doesn't go for Northwick Park as the wait time seems to be a lot longer! Hopefully he will see that though.
I guess I (and everyone else) is a bit confused about what it is exactly - I did have the cough for ages but managed to get rid of it with physio's help (she thinks it started off 'real' but after a while became self-perpetuating as coughing obv irritates airways, makes you cough more etc). Atm GP is definitely thinking asthma of some sort due to response to medication, but he doesn't know where to go with treatment. The Brompton or whoever may disagree, and I guess I'll have to be open to that. I don't want to be a pain and insist I must know better than them, but one thing I really do not want to let them do is send me back to where I was most of last year with no medication, really struggling and being told there was nothing wrong at all. Hopefully though from what you'd said RBH at least wouldn't do that.
Well I wouldn't say they don't do that! They took me off all of my medication at one point to 'see what happened' by lung function dropped to less than 30%, i was wheezy and couldn't walk around! But I'm pleased they did it now, because they learnt a lot from it. I was personally an inpatient at the time, but i've heard some people just have things taken away. Wherever you go, try and stick it out. In the end, if they can see your lung function is crap/your chest sounds rubbish/you have reversibility they're going to take you sreiously.
You'll get there in the end!
Xxx
Thanks for more info anzharry! urggh well that is the whole problem with me, the symptoms/medication response compared to oddly good test results and lack of wheeze! But thanks to this board and the AUK line I know I'm not the only one so I would hope wherever I go they have seen weirdos like me before lol
I don't mind that much if they want to take me off stuff for eg a week and watch what happens. I will however object if it's 4 months again without a word from them - can't afford what that does to daily life.
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Just out of Hosp - very confused :o(
Got a referral to respiratory! 
