Consultant Appointments

Hi all, I've been on here a while and love reading all your posts (replied to a few recently) but this is my first :) I was diagnosed with bronchiecstasies in December '11, saw the consultant in June and December '12 but nothing since. She went on maternity leave but I wasn't passed to anyone else. Is that normal, how often do you all see your specialists?

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  • Hi Kat22, well done on your first post, it is not unusual to miss seeing a consultant if they are on holiday. Seeing specialists is very much an individual thing. Some of us are cared for by our GPs surgery only seeing a consultant when a crisis arises. Hope this helps your question.

  • Thanks Katie,

    My GP has basically left me to it. My azithromycin and coamoxyclav are both on repeat prescription so I "don't have to visit too often". It was October the last time I saw him. I'm not very good at 'pushing' for myself ;)

  • Hi Kat

    So since being dx, having seen your consultant at 6 monthly intervals, you have not had an appointment for 14 months and no idea when you will get one.

    Bronchietatics should be monitored by a specialist respiratory cons at intervals dependent on how stable their condition is. As you say your GP has left you to it! Good you are on Azith - I assume this is as a prophilactic.

    Your consultant being on maternity leave is irrelevant to your care. If I were you I would telephone cons secretary and ask her what the position is with regard to your next appointment. I hear you 'not very good at pushing myself', unfortunately you really do have to be your own advocate with bronch or sure. If you're strong enough to cope with bronchiectasis you are certainly strong enough to fight your corner. If you get no joy from sec then ask GP to look into it.

    BTW did this consultant refer you to a respiratory physiotherapist and do you do any kind of lung clearance?

    Good luck hun - let us know how you get on.

    Love cx

  • Hi Coffdrop,

    Yes the azith is a prophylactic which I stop and go onto coamoxy when I have an exacerbation. I also have a hearing loss in my right ear so my ENT has insisted on three monthly hearing tests with the possible azith side effects. I saw the RP in January 12 and she showed my breathing technique for lung clearance but again nothing since then. Most of what I know, I've found out from sites like this.

  • Did RP not show you any gadgets which may prove helpful like the acapella or the flutter? I will put up a link so you can see what they look like.The acapella choice is the one they have in hospital. I have been given 2 in my time from the hospital but bought the last one on Amazon. If you decide to buy one from the med companies make sure you get the VAT medical exeption form. The flutter you can get on prescription from you GP. Both cost about £50 normally - that's why a RP should check out what you find works for you first.

    henleysmed.com/product/rtp2...

    Acpella Choice is more usefull if you do postural draining as it can be used in any position.

    cx

  • Taken your advice Coffdrop and phone the consultant's secretary - she's going to speak to the consultant (who is back from maternity leave) and phone me tomorrow. The RP just sat me in a chair, demonstrated the breathing technique, had me do it a couple of times and gave me a brochure about it and that was that - took all of ten minutes lol. My sister bought me a flutter pipe for my birthday last year. I can only hope that I'm using it properly ;)

  • See you are good at pushing;-) Let us know the outcome tomorrow hun - there are other things you might want to ask her about!!!!

    What would we do without our lovely sisters. My Mum was my rock but my sis has inherited her generosity of spirit - we're very lucky.

    love cx

  • You're right, my sister is an angel.

    I'm the youngest of three sisters and sadly Ann, the eldest has Alzheimer's so Mary has taken on the role of Mum despite being 12 years younger than Ann and only 18 months older than me lol.

  • I have c.o.p.d and try to see him every 12 month's .

  • Do you see other support in between visits?

  • I have COPD, final stage, and see my consultant about every 5 months. My GP is as useless as yours and I can't remember the last time I saw him - just remembered it was when I had insomnia due to a side effect of an inhaler and he advised taking cocoa before bed!!! - but I can telephone or email the community matron or the hospital outreach respiratory team. I would recommend you take cofdrop's advice as she has a lot of experience in this area. KEEP PUSHING.

  • Theirs a respiratory nurse available by appointment!

  • It's amazing the difference in provision and treatment from one area to the next. I shouldn't really complain because my GP did keep me on when I moved out of their catchment area. I've heard nothing good about the one for the village where I live.

  • The lack of specialist bronchiectasis nurses is one of our bug bears rick.

    Only heard of a few bronchs who have access to them in the community and in hospitals there are only 3/4 within the UK. I have discussed this in the past with my consultant as at the hospital I attend there are 4 cf specialist nurses and even though they have a lot of bronchiectastics there are 0 non cf bronch nurses. There are also specialist copd nurses and matrons visiting their patients when in hospital. Quite right that cfers and copders have access to specialist nursing, but you can see why we get so ticked off - it is all because their is a lack of funding for bronchiectasis which is only funded on an as and when basis according to my consultant.

    that's my little rant over - normal service resumed. ;-)

    love cx

  • Our surgery has a nurse practitioner who does all the respiratory treatments. But she really concentrates on Asthma and COPD, and admits herself that she knows nothing about Bronchiectasis. My GP doesn't know much about it either. Almost had a argument with her when I needed rescue meds. I insisted I needed two weeks supply but she insisted one week was enough. Thankfully one of the other doctors fixed me up with two weeks supply.

  • I rest my case. Your doc should take a look at the guidelines for bronchiectasis poems.

    Love cx

  • Hi Kat, well done for posting! I did the same looked in for ages before being brave enough to join in, and oh my goodness how glad I did. I have learnt so much form lovely people here sharing their knowledge, offering their ideas, thoughts, opinions and experiences. Best thing I ever did for myself.

    Knowledge appears to be the key and with it you get the courage to stick up for your self (because, really, at the end of the day it's up to us).

    I've improved no end.

    I don't have what you have although yesterday I was at consultants - refuse to see him though (because he's rude, dismissive, horrible and doesn't listen) so always ensure there's a registrar on duty for my appointment. So I was sitting there, free of stress yesterday knowing I wasn't going to have to converse with him and after half an hour who should call my name but HIM. I went over, smiled and said " thank you but I'm seeing someone else". Went back to my seat and the lady near me said "what did you say". I told her and she said ooo, you're so brave, I'd never have the guts. It was only a little thing. I didn't tell her why I won't see him, didn't think it was fair but I did tell her that you never have to see anyone you don't want to.

    This site gives you knowledge and therefore confidence.

    Very good luck to you in getting the care you deserve.

    I saw the someone at the specialists 5 times in the last 13 months and I see my respiratory nurse at the practice 6 monthly. And I'm mildish to moderatish! My gps want to help me now, not wait until I'm worse (thank goodness). I've even done the PR (pulmonary rehab) which was excellent too, have you done it??

    Take care xxx Peeg

  • Thanks Peeg. No I haven't done PR, what is it?

  • Pulmonary Rehabilitation .

    It's usually a six week course. Two x two hour sessions per week made up of the 1st hour of monitored gentle exercise and the 2nd of learning about lung issues.

    Many people will tell you how life changing it can be.

    Peeg

    ps don't 'ask' your medics if you can go on one simply tell them that you'd like to be referred to go on one because it will really help you manage your condition for the healthiest future. .. ie " I'd like to go on the pulmonary rehab course, would you refer me please".

    My GPs respiratory nurse asked me if I'd like to do it. I asked if I was bad enough (as I'd read about it here). She told me I was perfect for it because I'd learn to prevent worsening and more damage.

    The lovely registrar also offered it to me.

    The thing is it will save the NHS a lot in the long run.

    Peeg x

  • Hello Kat22 and welcome. Hope you get what you want keep pushing. xxxx

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