rant for a change? lol and advice

hey guys!

needed a little rant and advice.

was supposed to be travelling back to london today from being at home with parents for REST for past 3.5 weeks, though in that time still managed to have 2 episodes of pneumonia - 2nd of which i am really struggling with now(hoping i dont need costa again :( but okay for now, been to costa resus few times and admitted overnight and few A+E visits *sigh* though judging by last few weeks prior to me coming to wales (coincidently starting vitamin D at same time due to SEVERE deficiency...) this is an improvement!!

STILL on 40mg pred for Lord knows how long now, i have lost count, been on pred long-term for alomost 2 years, and everytime i try to reduce i end up in costa or something goes wrong :( the aim of my present cons is to get me down to maintenance of 15mg - huh, yeah right?!

finally had my appt through for RBH yey! :D though not until sept 19th so gotta wait till then for the Gods of London to finally sort me out, just praying i can manage till then..

supposed to have my existing cons appt tomorrow but rearranged till next week along with xolair injections, they due to finish AFTER my appt with RBH so dont even know if they will continue to give them to me, and to TBH, i know they wont work, so rather someone else have them instead of me :(

i really dun like my present cons at all, and dread seeing him. feel as if he lectures me everytime i see him. he says i dont try hard enough to avoid my triggers and dun follow my management plan and just make my own up, not happy with my self-disch which i have promised not to do anymore :S and he has no idea what to do with me - how to treat me next. even asked me - what do u want me to do for u ? - apparently thats a BTS guidelines question all cons ask their patients? but i was deeply upset and offended and felt like hitting my head against a brick wall... he just sits there and grins in each appt >:( then he says he is confused as sometimes my lung function in clinic is shite, other times its perfect - isnt that what it's supposed to be for us brittle asthmatics - variability like our pf?

i have occ health on fri so really need to be back in london for that. been off work 6mths now :'( and go down to SSP only from august 5th and certainly wont be able to manage living in london on that and dont wanna rely on benefits as they take forever to go thru and cant wait for that wen strugglin now :(

occ health need me to be having less major attacks and costa visits and be on 20mg or pred to go back to my existing ITU post.. so i dunno wot to do or where to go from here, i cant magically cure myself by fri ??

so gonna have to think of something and ask them PLEASE PLEASE place me somewhere else as i NEED to be back in work and off 'off sick' ASAP for financial reasons as well as my sanity and normality and stress levels... i am willing to go into any capacity until RBH can sort me out, which i hope they can, in september - ish time...

anyways, sorry for long post and rant. rant over...

hugs to all x x x

20 Replies

  • Hi Snowygirl, I'm briitle too and on maintenance dose 15 mg Pred and Cyclosporin. Like you when I reduce Pred it all kicks off, mine is not allergic type of asthma. Maybe Occy Health will postpone any decision or plan after your RBH appt or possibly a day surgery 9 - 5 Mon - Fri post. I worked for the NHS but resigned after being off sick too much and relyin Incap Benefit and DLA now. I don't want to medically retire as it's too final. Hope you have a positive experience at the Brompton I know they have helped many people on here. I gave up with them after having an awful time with an arrogant Consultant, not one of the asthma team, and had put me off completely with specialist centres. Your local Consultant doesn't seem very clued up on Brittle asthma surprised you've put up with him.

    I worked for a GP practice and got paid one week sick and then straight on to SSP, how disgusting is that, I couldn't afford to stay in work!. I hope your meeting with Occy Health is positive. Take care.

  • If I was you I would keep going wiht Xiolair as then can say better you gave it a go and failed!

    I understand about the steriods thing I am having that problem though I get down to maintaince for about a week when I reduce my way (5mg every 3 days) where I dont when I do what they told me to.

    I understand totally how you feel about the whole consultants not knowing, mine has just hit a brick wall he dosn't know what to do for the best and dosn't want to subject me to thing that wont make much of a difference though I say try it and then I will know if it works!

    i find writting a letter better as I tend to do the whole sit there an nod at appointments and generally he dosn't give me a chance to say my bit... its how many times you been in and that all he asks me

    When I was off sick from work even though i worked more hours than contracted my contracted hours were less than I was able to get SSP and didn't get company sick pay. When the company asked me not to work when they invegiated sickness with OH they had to pay me as I was willing to work. Now I am on ESA and DLA

  • Maybe going back into ward nursing might not be the best idea at first be open with OH and take whatever options they give you. Maybe Outpatients might be better or pre-assessement might be suited whilst asthma is going to pot!

  • I think it is sometimes good to have a quick rant! Say I will have a good rant and strop, then pick myself up and get on with it.

    I definitely sympathise with the consultant bit- I stropped to my boyfriend after my appointment today. I was wondering whether you could change consultants -could you just be managed at the RBH or maybe the RBH and someone at the place you are normally admitted. At least if you could change or even plan to change it would be something you were in control of!

    In terms of the pred reduction it reminds me of the Oscar Wilde quote about 'the triumph of hope over experience'. He was talking about second marriages but it still seems rather appropriate.

    Take care


  • okay...have been thinking about this...as you know I have been through the occupation health assessment although with a different job I know...but have thought about some advice for you.

    I was very honest with occpational health and they were great with me...offered redeployment if necessary (not at the moment) and have cut my working hours! they could redeploy you to an ""office"" based job or as someone said in a less clinical environment...I believe under the DDA this is a reasonable adjustment...and I am sure you will be covered by this. I think that others on here have been offered that in the past.

    As for your consultant sounds like he is a bit of an a7se...to be honest. But I am not sure what you can do. Do you think it is worth making a complaint...I am not sure? Do you actually need to see him? Or can you rely on just being seen at RBH...I do agree with bizkid though I would go for zolair if it doesn't make you worse. It just shows you are willing to give everything a try...and will count in your favour. Seems daft I know but some of these doctors with god complexes will use any excuse to have a go and say that you are non compliant and that to be honest sounds like what is hinting at with saying you don't follow your plans. I would do everything by the book for now and hope that something comes along at the RBH that can help you significantly. If the worse comes to the worse do you have contingancy plans for where you live etc...I know it is a horrid thought but I found it quite comforting to know if everything went wrong I could rely on something.

    Hope you sort something out



  • My local consultant sounds the same as yours! He always makes me feel guility when i am a inpatient even though hes seen me realy ill. You just have to kinda put up with it and hope Bromtpon will do most of the management.

  • I can't really offer much useful re advice as not really dealt with situation, except to say sounds like asking for them to put you somewhere else for a bit where you don't need same level of fitness (or whatever they call it) could work. Can completely understand why you'd want to be back at work doing something even without the financial pressure.

    Just massive sympathy as it must be so incredibly stressful having to think about all that AND bouncing in and out of Costa etc so rant completely understandable, I hope it helped a little especially since you have to wait till Sept - so frustrating! Can't offer much constructive advice on situation but if you ever want to PM me for a rant am happy to 'listen', sometimes just helps esp if not to family/friends, that's why I love the forum.

    Really hope you get something sorted out hopefully NOT with current cons who sounds charming (at a totally different level I've had 'what do you want me to do?' and is always so annoying.)


  • Oh, Snowygirl, I'm so sorry to hear that you haven't made it back to London yet, and that you're struggling. You've had a pretty rough few weeks of it, haven't you?

    Is this your consultant at G&T that just grins, or is it a different one? I'm so sorry that you don't feel he is contributing much to your care, and sorry that you have so long to wait until you're seen at the Brompton. It must seem like an eternity, given that you're struggling so at the moment, and that you're such a frequent flyer to the Costa del NHS.

    I don't really have anything to add to what everyone else has said, but just wanted to let you know that I'm thinking of you and sending lots of hugs, and to let you know that I'm only on the end of the telephone if you need some 'in person' sympathy.

    Wishes xxx

  • Oh Snowygirl, I wish I could offer you some ideas that might help, but all I've got is hugs and positive thoughts. Keep strong.

  • i hope you are feeling better soon x no ideas here but plenty of support hugs to you xxx

    Amy xx

  • thankyou + letter from cons :(

    hi guys

    thank you all for your replies, and well wishes and advice and HUGS :'( means a lot.

    tomorrow is D-Day with occ health... so today travelling back to london from home i have been quite emotional, stressed, anxious, crying, you name it.. on top of recovering from pneumonia :(

    just fed up and angry and aarrggghhh!! sorry guys.

    when i finally got in, had a letter from my existing prof grin at G + T written to my GP only cc : me as all the lettters are. stating that he knows i have been referred to brompton - which appt is 28th sept tho prof grin doesnt know that. he is unhappy that he hasnt had chance to work out all my asllergies and root of my asthma severity or indeed if it as severe as it is or do i have another condition as well as the nerwly identified severe Vitamin D deficiency which makes my asthma appear more brittle than it is, based on my symptomology and also says i seem disinterested in being treated. also APPARENTLY i have too much contact with the emergency services - WTF :'( what does he expect me to do? so from now on, i aint ringing for help, goin to A+E or gp or anywhere unless i am dying - sorry :( cos it upsets my current cons?! also i have an existing directive so that LAS when they pick me up know to take me same costa, only that doesn work if i am in wales with parents or in south london having cardioresop arrest - he unhappy bout that as well, which he is doubting i had as it wasnt in my local costa. my sister was wit me and witnessed everything and was traumatised by what they did - isnt that enough :'( then in relation to that i have had too many admissions - so he thinks i LIKE being in costa being attached to monitors not being able to breathe and pumped full of iv meds that make u sick and heart feel as if its gonna bounce outta ur chest, hey?!

    he is a f@#king hard man to please .... he really upset + pissed me off when i read this letter. cos of all this he is considering discharging me from his care... what i am afraid of tho, he also cc : my new cons dr M-G at RBH, and i dun want that to affect our relationship + my treatment there :(

    in relation to occ health tomorrow, as the time is goin, my stress headache is getting worse and so is my anxiety :( i have never let anxiety get to me like this before, but a lot is resting on tomorrow - today even. appt 1015am so have to leave 0830 latest, gimme time to get there with am traffic etc..

    certainy wudnt go back working on ward as that was more stressful than working on itu where i supposedly work now - tho doesnt feel lik i can call myself an itu nurse anymore...

    i also used to work in Out patients and pre-assessment - it was one unit - we would rotate to with blood clinic also. so that would be okay i guess, at least something until i am 'fixed' isnt it.. i have to go back to work somehow. plan before with work and occ health was a phased return of one shift a week for month, then two/week for month then full shifts after but during phased return luckily i get full salary :D

    however that was on basis i get down to 20mg pred, yet i am still on 35mg from friday.

    what i dont want him sayig is wait till after RBH appt end sept before going back to work - it will destroy me - i kow theres people who are worse off than me, and cannot work and i apologise to you all...

    i will be down to SSP then, which means i cannot no longer afford to live in london, cannot pay all my bills, have to move back home to parents in wales and as a knock-on conseqeunce have to give up my job up here, my life here, and more importantly my asthma treatment and management at RBH wont exist and will be effected as asthma management in wales is like postcode lottery :'(

    so frustrating.

  • You'll be on your way now but thinking of you and crossing fingers it all goes well and you get something sorted out - hopefully you can do the assessments/bloods as that seems like a reasonable adjustment. You are an ITU nurse still even if not working there right now, you've got the skills/knowledge, look how you were able to help Alex and interpret stuff even over the phone.

    Have to say your cons really does sound like a piece of work, no wonder you don't want to see him anymore. Not that I know anything about it but he seems to be allowing some rather odd personal opinions he has formed of you colour his professional judgment, can see why that letter would upset you. However it seems (and ok I know nothing about it myself but from what others on here have said) that the RBH is very much a place where they are used to starting again and not paying too much attention to what others have said - I bet a lot of their patients come to them with preformed opinions and information about them from people they've seen, but they seem to prefer to make up their own minds what's going on.

    Can't believe how long you have to wait though - when you originally said being referred sounded like it would be in a few weeks, now sounds like it's being moved again? You can't get it moved forward at all on the basis of interfering with work?

    Anyway sorry for rambling on a bit, just wanted to offer sympathy and really hope you get a break somewhere as you're really having a hard time of it. xxx

  • I knows it hard but all the stress ur under ain't hoping ur asthma... I've been there also with work and nhs ..... Despite my sicktime they never did a phased return and where talking about terminating my contract when I dropped to no pay...... I took a gamble and applied for I'll health retirement.... I was told by occy health I wouldn't get it but as nothing to loose we applied and I got it.... I miss work terribly but not the stress from management ... Money bit tight but managing more important asthma settling. Hope things work out

  • Snowygirl, I hope it wasn't too bad yesterday and you worked something out? Crossed fingers that you have managed to get somewhere with this whole situation.

  • occ health ...

    sorry guys couldnt face coming on here sooner, mixed emotions and then out last nite...


    told occ health boutth letter. he werent happy, said i need to refute the letter and reasons y and then a separate letter asking to be discharged fromhis care - one step ahead of cons before he discharges me...

    i havie an appt with such cons this week + i am dreading it :S knowing wot he has said and him knowing bout the ref etc...

    occ heath have said i cannot go back into clinical environment as yet as i am still too unstable and a risk :'( so will discuss with my manager the poss of me doing phased return to work in a non-clinical setting, though the days i work each week will need to be flexiable + changable on short notice poss based on stroppy lungs if needed. if not then temp redeployment with same understanding...

    all of which to happen until such time as i am stable enough to work in a clinica capacity again :'(

    or until see at RBH end sept and hopefully lungs sorted out. they are glad that another conidtion identified and being treated and that seems to be improving things, but still on too much pred and not stable enough.

    if the above cannot be met, then i need to remain off sick until lungs behave, asthma settles bit more and i have less visits to la costa... less contact with emergency services (if u remember, like my cons said in letter, i do contact them too often??!!) which means if this happens - goodbye london, hello home in wales again as cannot afford to stay here...

    i need the ealier choice to go my way, i really do :'(

    so the stress + worry continues, until my manager meets with occ health then ringsme with final verdict..

    afterwardswent for drink lastnite with afriend-few vodkas - first time in 6 mths! so feeling the effects ofsuch this morning - hangover from hell... lungs behaving tho :)

    x x x

  • Thanks for updating us (though hope you didn't feel like you had to, if that makes any sense). Glad you had a night out after, must be better to have hangover reason you feel rubbish than lungs (well, not that I would know lol, can't drink so never had proper hangover).

    Sounds like they were at least understanding and helpful re letter from your %^& consultant, charming guy that he is. Would hate to work with him if he's like that with patients!

    Does occy health know you will have to quit and move out of London if you can't do phased return? From what I've seen from people on here the NHS doesn't necessarily value its staff very much but maybe that would make them put more effort into finding something you can do - esp as if they don't they will presumably then have to hire someone else which may end up costing them more? I know nothing about nursing so apologies if I say something which is complete b***lcks but in places I've worked there is usually stuff which needs doing but isn't top priority so gets neglected - not really what you trained to do but could be they could have you doing something like that for a bit?

    Anyway sorry for rambling on yet again! Massive sympathy as ever and really hope they work something out for you asap. xxx

  • Hi Snowygirl,

    i think i have the same proff as you, proff c? at guys,

    we too dont see eye to eye on s/c terbutaline, i have been on it best part of 18 years since being a student nurse, and do come off it from time to time, but he feels it adds nothing to my management other than give me side effects, which i didnt really have until reciently!

    I ran the chest clinic at St T for a year or so and really enjoyed it, but the chest was quite grumpy, i did eventually have to give up nursing and although i miss it very much, i eventuallly built my fitness up and have retrained as an outdoor instructor, i teach, quad biking, very cool, kayaking and canoeing, climbing, shooting and Archery, the pay is much worse than nursing, but i am happy, being outside does sometimes have its drawbacks especially with this weird weather we are having, but i work with the best team ever, better than any NHS team i have ever worked for and love it.

    it is a big step if you have to leave work, but 10 years down the line i am a much itter and happier person, remember no one can take your knowledge and qualifications away from you.

    best wishes,

    George xx

  • hi george

    yes thats him .....

    i dun see eye to eye with him on anything!! he has it in for me on just bout everything :(

    *sigh* do u find he also grins at u too? Ratty says same, she sees him too.

    got appt with xolair nurse on thur to restart the whole thing, which means of course u see prof beforehand... yet not sure if they want me to still have it seeing as my appt at RBH in 59 days and counting, and like me + him both agreed not sure it gonna work for me, 'but we try something.'

    dreading seeing him knowing wots in the letter he put to my gp and cc: RBH consultant :'(

    even if dun have xolair now, do i still go? wot do i say? :(

    things seem to be improving since new condition identified - NOT BY HIM BUT BY ME cos of suggestion by another forum member, and subsequently treatment started...

    yet on the other hand, he has made me feel, dunno if scared the rite word, to call 999 if needed cos apparently i ring them too often?? and everything else he said :(

    cannot wait for RBH to sort me out :)

    work wise - i have to ring my manager today to touch base and see if she has received report from occ health + wot she thinks she can do, if anything. obv non-clinical for time-being. then await for her to meet with occ health, then she will ring me with her verdict + hopefully, crossed fingers, an agreed return to work date - phased return to work.

    last year, when i was off for 5mths and i did phased return to work it was with previous job, and the phased return was only 4 weeks - clinical - and was only to work my notice as i had been given my current post :) lol regardless of sick time, cleared by occ health etc and i was very open + honest during interview. yet my ex-management were awful and my colleagues gimme hell :'(

  • Hmm, bit of a common trend on here with occy health and work esp NHS. Anyway, hope it all gets sorted out and you get back to work in whatever form. Good luck with cons appt etc too!

  • Crossing fingers you get something sorted out - NHS don't seem to be most friendly of employers!

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