Sorry, I just need a rant whilst I sit here in tears and I know there's people here who'll understand. I've just had a really horrible letter from my consultant and I'm furious that it's on my medical records and that he's even allowed to write that stuff.
He's said my adrenal insufficiency diagnosis is wrong and the endocrinologists agree - that's not true, they diagnosed it and I have it in writing from them and wouldn't be seeing the endocrine team if they didn't believe it, he's questioned all my symptoms and tests and there's just so many things that are wrong/totally made up (for instance he's said I took pred before the tests which altered the results - what sort of accusation is that???? They took me into hospital and I had it under supervision anyway so they know that's not true and I wouldn't do that).
He's then gone on about my asthma and said it's disappointing that my PFs drop when I have a chest infection as if it's something I should be able to control - I mean WTF!!!!!! I'd like to see his (or anyone's) PFs remain the same with a severe chest infection, that's just nonsense.
There's a major typo that if I followed it (drop my Pred by 25mg daily...) I'll be dead in a few days - good thing I have a few brain cells left and a GP who isn't an idiot.
He hasn't actually responded to any of my concerns that I went to him with or listened to me and how I feel at all, he's just made me cross about other things. I'm leaving London at the end of the year and he seems to expect that I'll just jump on a train every four weeks to go to his clinic - it'll take 5 hours there and 5 back so I'm not sure quite how he's expecting that to happen unless he's providing me with use of his private jet (I assume he has several of these lined up outside his mansion - he certainly seems to live in a different world to the rest of us).
Sorry, that's very ranty - when I actually have some sensible questions, I'll post them, I just needed to vent a little. I shall go and eat chocolate and calm down now.
Just want to send you a big hug, I bet once you get over being angry you will be very upset.
Ive had a similar thing happen to me years ago, my consultant, (very closely related to God I think!)
wrote to my GP saying I didnt have asthma, let alone brittle asthma, that he didnt know why Id been admitted to hospital, big clue, I was blue & not breathing!
He said some very hurtful things, like I made up how ill I was. Id really love to know how you can fake a collapsed lung or blood gas results!
Like you I was furious that this rubbish was going to be in my medical records, but I guess after a while it soon gets covered by letters etc from the doctors who really knew me. My own Gp told me not to worry, he had treated me several times whilst having severe attacks and knew how bad I was.
Its just so frustrating to be treated like this, especially by someone supposed to be at the top of their profession.
None of this really helps you, just want you to know. youre not alone, and try not to let his hurtful words upset you.
Chocolate always helps!!
I have had a similiar thing happen to me... There are a couple of things you can do...
1) Write to your consultant and also your GP with the correct information. Ask for incorrect letter to be corrected and old one removed from your notes. If they will not do this ask for your letter to be kept on your file, so anyone looking at it can see it is wrong and you disagree with what has been said.
2) Speak to your hospitals PALS adviser and if appropriate action not taken make a complaint to the chief executive of your NHS trust.
3) Ask to see another specialist either at same hospital or another hospital where they can deal at the correct level with your asthma.
I can appreciate how annoyed and aggreved you must feel. Sounds like your consultant is a real ****!
That's awful Ratty. If they didn't think you had adrenal insufficiency then why would thu start you on hydrocortisone for it. If they made an error in the diagnosis of it then they owe you an apology for putting you through the diagnosis and unnecessary treatment rather than blaming you for what is essentially their mistake!!! Appalling
I am so sorry your consultant has managed to upset you. I was introduced to my consultant because he has a bedside manner that makes him listen to his patients. Even after wading through your discharge letters he will confer with the patient.
I need to be able to relate to my doctors otherwise they can't help me. I was a skeptic when my asthma began to worsen. I felt it couldn't be asthma as i was so ill. He had to convince me that asthma has many faces.
I think you should speak to your GP and get it sorted so you and your consultant are on the same page.
Gill
Rant away! What a horrible thing...if I remember correctly he has done this before with someone else on here? Seems to be turning into a habit with him, not quite sure why he would suddenly start deciding you're making stuff up. He must have a very odd mind if he suspects anyone of all this stuff!
I have no practical advice I'm afraid but it sounds like you'll be well rid of him; he clearly has a God complex if he thinks he's so great that there is no-one where you're moving who could possibly fill his shoes and you'd come all that way every 4 weeks! Hopefully when you do move (and I hope it's somewhere nice) you will have a consultant with fewer personality issues.
Oh Ratty, I am so sorry that your Consultant has upset you.
I hope you have a good GP who knows you and your medical conditions better
Best wishes to you
Thanks everyone. It's such a support to know that there's people who understand this and the impact it can have. I've calmed down a lot now - the chocolate helps a lot!
The point about the letter eventually getting buried is a good one - my notes are so thick they keep losing things, so hopefully this will go the same way... I'm seeing my GP tomorrow, so I'll just reassure myself by ensuring she doesn't just copy what he's written onto my notes. I actually find the whole letter quite bizarre, especially his claim I've had tests I haven't had. I'm seeing my endocrinologist on Tuesday (hmm, that's odd that I have an endocrinologist and endocrine nurse if I don't have adrenal insufficiency...!!!!) so I'll get them to clear things up too.
As to continuing to see him, well it simply isn't going to work as I would actually have to turn round before I got there to get back in time for the last bus... We'll see what they say to that.
Thanks again everyone. Hmm, need to find another excuse for chocolate now!
aww sorry to hear you had a horrid letter and contradicting to what you have in writing ,
its enough to confuse anyone and they put you on meds for it xxx
just to say that i totally sympathize!!! my my second consultant said that he just thought i had psychological problems, and he didnt know what bronchopulmonary dysplasia was, and he wasnt interested in finding out!! i also had a consultant say, in the same sentnece, that my asthma was completely uncontrolled and unpreditable, but that i should just get on with living a normal life!!! so yes, i would suggest getting a second opinion at your usual hospital, or a different one if necessary. also, it is true that one ridiculous letter will probably just get lost in the piles of other ones that prove that you are really sick, and not making this up at all. hugs!!!
Ahhhhhh, I'm loving my GP. She says I can have chocolate for short-term stress relief, and my consultant's not the only God, so just address the issues with the endocrine people, and in terms of practicalities I need to change resp consultants - treking to London isn't going to work, so I can be referred to another God/consultant. She's even helping me make plans for early registration with a new GP so they can start the referral process so there's as little gap in my treatment as possible. I like people who are practical and listen (and let me eat chocolate!!). Feeling much more chilled now and happier about sorting this out with the endocrinologists tomorrow.
Aw Ratty, not good I kind of know how frustrating these consultants can be. Have just had a letter from my respiratory cons. where he didn't mention half of what I said, didn't say how to reduce inhaled steriods, I don't have a 'full house' of symptoms (ermm, any?!) for hyperventilation but off to physio for me ... & a few more besides grr. Now have appt with GP who seems to have just taken a few things off my repeat px. Going to see my sensible asthma nurse soon too - helps having someone that's more on your side & thinks practically
Where abouts are you moving to as bound to be someone on here nearby or with previous experience of hospitals?
Ratty, my GP is good I know (he restricted himself to making a face when I said I'd been out to Bonfire Night and my chest got worse, rather than lecturing me), but yours is amazing! Anyone who prescribes chocolate has my vote, and the practicalities are massively helpful as well; I just hope you can find a consultant without a God complex, if such a thing exists
I didn't actually see my last letter from the hospital as the resp people don't send them to me. My GP did though and said in a very unimpressed way that they were saying I was completely normal (something he thought was rather a risky thing to assert with such confidence) and my issues were all down to stress/anxiety and hyperventilation. Can't say I was happy about that, as if my GP hadn't been what he is I would have been left with that letter saying I don't need any treatment and was fine, just unable to walk faster than an 80 year old and with a persistent cough... Grrr, consultants!
Mine never listened either TJ but seeing the physio should actually help as if you do have the slightest hyperventilation (which my GP says is bound to happen sometimes with asthma but doesn't detract from there being asthma), they will sort it. If you don't it will be there officially in your notes saying your breathing pattern is fine, and they are more likely to pay attention to that. I am glad I saw the physio as I now have that official confirmation and she's said she doesn't really need to see me anymore after 3 sessions, which will come in handy when I see my next consultant...
Sorry for usual ramble!
Thanks Philomena, get copied into letters here without even asking but you could if you want I think? Am almost looking forward to seeing reaction of GP & nurse when I see them.
I'm hoping the same with physio whenever I actually hear about an appt. Should have only 1 session unless more needed.
Ratty, honey, I've just this minute read your initial post and I just want to go down there on the next train and give your con a good talking to. Man's an idiot as far as this appt went. So glad you have a decent GP on your side.
Wishing you better cons (no numpties) a lot nearer to you after the move.
GrannyMo
(boiling with indignation)
Thanks Grannymo - means a lot.
Well, I saw my endocrine team today. They were 'bemused' by my resp consultant's claims to say the least, especially his claims re. test results from tests I haven't actually had!! They've confirmed that I am right about my understanding of my diagnosis, confirmed my prognosis (kind of bittersweet, as don't like to hear it but at least I know I'm not going mad and making things up), and have stated the treatment I need to be on. They're also going to discuss it with a higher-being (above God???!!) - I think they meant the endo-consultant big boss man who wasn't in today - as my case is quite complex, and ensure my needs/treatment are put into writing. And I'm to contact my resp cons and 'ask nicely' that he guide me re. my ASTHMA treatment as that's the bit that's been left unaddressed.
They've also said I need to have a local cons when I move - both endo, resp (and my others) so all my care is together and accessible(ish). Feeling much much better about stuff now (but still eating the chocolate!). I'm going to draft a letter to my resp cons and put it in a drawer for a few days, then re-type it with all the emotion removed.
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I kind of know how frustrating these consultants can be. Have just had a letter from my respiratory cons. where he didn't mention half of what I said, didn't say how to reduce inhaled steriods, I don't have a 'full house' of symptoms (ermm, any?!) for hyperventilation but off to physio for me ... & a few more besides grr. Now have appt with GP who seems to have just taken a few things off my repeat px. Going to see my sensible asthma nurse soon too - helps having someone that's more on your side & thinks practically 
Any advice on explaining severe asthma to doctors and nurses?
Any tips on how to help wheezing and coughing overnight in particular please.
Fed up and things dont seem to be getting much better...
