Bronchiectasis Consultant Recommendations

Hi,

I've struggled along with chest problems for 3 and a half years to be diagnosed last week with bronchiectasis. As it's taken so long to get this far I feel I need to now aim high and get the very best guidance straightaway. So I'm willing to travel anywhere in UK, even further if needs be, if I can get to see a really good specialist who can point me in the right direction without any further delay. I'm willing to go private too.

I'm reading up as much as possible but until Friday I hadn't even heard of the condition, and it's only today that I think I can actual pronounce its name.

I would be very grateful of your experience and guidance here on who is/ are the best people to see.

Thank you very much for your time.

Catherine

27 Replies

oldestnewest
  • Hi Catherine

    Sorry to hear you have bronchiectasis but so glad you are being very proactive and making sure you get the best bronch service you can. Perhaps you could let us know the name of a large city you can access easily, as it may be there is a good consultant close. Failing that there are a number of excellent respiratory consultants with a special interest in cf/brnchiectasis throughout the country. It is patchy though and you are right to want the best for you. I have over the years had good, bad indifferent and excellent, as many of us have who have had BE for many years, before the internet, so you should be lucky and get sorted.

    We would have to pm any names of consutants to keep within the guidelines of BLF, but we are more than happy to share any information we have.

    Love cx

  • Thank you very much cofdrop for you kind reply and for your thoughts too mrsmummy.

    I'm near Sheffield and willing to travel. From what I can see so far there are some special clinics in London, Manchester, Leeds, Leicester etc and I can get to those cities fine. At the moment my thoughts are if the best consultant is in Brompton I would very much like to see that particular consultant and take his advice from there perhaps?

    I very much appreciate your help and experience.

    Thank you

    Catherine

  • Good luck Catherine. :)

  • Hi Catherine,

    I'm going to the event detailed below on Friday, not sure if there are any spaces left, you'd have to enquire.

    I believe its being recorded and will be available to view on line shortly, could add to your knowledge of the condition

    This June, you're invited to attend Medicine and Me, a totally free event in London for people with bronchiectasis, as well as their friends and family. It's held in conjunction with the Royal Society of Medicine and Bronch UK.

    Reserve your spot on Friday 16 June by emailing medandme@rsm.ac.uk, or call 020 7290 3846

    More information about the day at rsm.ac.uk/medandme/bronchie...

    KR

    Treasurer

  • Thank you. I'll read up it now.

  • I have had Bronchiectasis for 20 years. I am 71 now. It took 5 years to diagnose this condition! My doctor then, didn't refer me to a Lung Specialist but one of the other doctors in the practice did! I thank him for that.

    Please try not to worry, once they get you on a medication plan and you stick to it, like I have, you should have a reasonable normal life. Yes, I get tired and have learned to pace myself. Good luck x Lynn

  • Thanks Lynn. Lots for me to learn I guess!

    I'm really keen to get sorted as soon as possible, being worried how it may get worse if I don't do my best to sort it quickly.

    Thank you

  • The Brompton has a good name historically because, along with the QE in Birmingham they were one of the first centres to specialise in bronch and it's research. Things have changed and although many are very happy going there ( we are all usually very loyal and attached to our particular specialist) there are other centres which are carrying out ground breaking research and have good bronch clinics. Newcastle, Leicester, Liverpool and Birmingham are probably your closest centres. Hope that helps.

  • Thanks very much Littlepom. The first one I looked into was Wythenshawe, Manchester. Is the help there good? Thank you very much.

  • I don't know about Wythenshawe but it is worth looking into.

  • Brompton is excellent but be prepared for a very long wait for your first appointment.

  • Thank you Joy. Is there a particular consultant I should ask for? I'm sorry to ask. Just feeling I need to do my best on this. Thank you.

  • Particular doctors cannot be discussed on the open forum. Please use private messages to share this type of information. Thanks.

  • Thank you mrsmummy. Am I able to receive private messages? Sorry new to this and finding it stressful which I'm sure is understood. Thank you.

  • To use the message facility just click on the name of the person you wish to message. This will take you to their 'home' or profile page and there is a 'Message' button at the top right. Click on that and you have a text box to write in and a 'send' button for when you have finished the message. When you get a message there will be a little number appear where your name is on the bar at the top of the page. Click that and there is a drop-down menu from which you can select 'Messages'. :)

  • Thank you so much for your help and time

  • I go to the Brompton & it's great but why travel all that way when you have this wonderful specialist lung unit so much nearer uhsm.nhs.uk/services/specia... I'll message you with the name of the consultant I would want to see there, if I were you

  • You star! Yes I feel Wythenshawe could be great for me. I'll look out for a message. Please bear with me. New to this and not sure too how the messaging etc works!

    Thank you everyone for your help.

  • Brompton is reputedly no 1. Papworth Hospital twixt Huntingdon and Cambridge (moving to a new purpose built unit of Addenbrookes Hospital south of Cambridge City Centre within the next year) must be no 2 then!

    Best known as a preeminent heart hospital - second heart transplant ever to be performed after Christian Barnard's ground-breaker in Capetown was here. Papworth was the first to do a combined heart and lung jobby, which is what made me check out its website 4 years which made me realise they also had a very significant Lung Defence unit.

    Ever since, this Unit has taken care of my lungs thru an initially tortuous path of correcting for a wrong diagnosis of lung cancer (by a Yorkshire-based consultant as it happens) to a correct one of a rather rare lung 'Malt' lymphoma which was sucessfully treated by radiation therapy directed by a lymphoma specialist oncology consultant allied to Papworth's Lung Defence Unit and based in Addenbrookes/Cambridge Nuffield Hospitals.

    My lungs were still generating sputum so further analysis determined that I had bronchX.

    What's great about Papworth for me is that they work on you as a team of specialists but coordinated by a bronchiectasis specialist. I have. In addition to the lymphoma guy and a consultant oncology radiologist I have had sessions with consultant immunolgists, pysiotherapists and parmacologists - all from within or allied to their LD unit. Tomorrow I am seeing the immunologist consultant for my annual MOT and (at the team's suggestion) an ad hoc once over of my heart from one of the Papworth heart specialists.

    What is outstanding is that at various strategic review or decision times they tell you that your case/condition will be discussed at the next Thursday am Unit team meeting and it is clear that ideas have been coming from the collective wisdom and experience of a range of specialists/disciplines.

    I don't need to name my main specialist as I'm confident they will give you great team care.

    Message me if you want names/more details of my treatment/detailed costings (still have all the bills which were sent to me throughout by my Insurer). Get to me very quickly if you want me to ask them any questions on your behalf later tomorrow afternoon -Tues 13th.

    PS good luck from a (fellow?) Yokshireperson! Born Donny, educated Carlisle and Essex Uni. Career Leeds, London and US. Currently having a second life in Thailand and back staying with my Cambridge-living sister for a week so as to visit Papworth again!

  • Thanks Santis. My husband is originally from Donny too!

  • Now I'm worried. I attend the chest clinic at Sheffield's NGH. Am I to take it from this conversation that they are not very good?

  • Ipogle I'm sorry. I haven't been there but my worries are I've been going to many appointments over the past 3 and a half years and only by my asking for a scan has this been found. I'm now out of my depth and feel I need to know that I'm putting my health in the right hands. I hope you're feeling ok.

  • Hi Catherine, I too have bronch and I live on the Wirral, Merseyside. My consultant is excellent and has been there for me at every stage, both before diagnosis and after. I have an emergency medical pack for infections that flare up when I cannot get to my GP, an asthma action plan and peak flow record, I also have a dedicated bronch/asthma nurse who I can contact at any time for advice. I have been on Azithromycin 3 times per week since diagnosis. I have just had my first "holiday" from Azith so that my consultant can see how I am without this wonder drug which has saved my life. I am really very well without it. As for living with bronch, all is good, yes I get more tired than I would like but like other bronchs I pace myself and as long as I can stay well, I am happy. I am 71 years old and thought this was a death sentence 3years ago but I met a wonderful 91 yr old woman at the consultants clinic and she had had bronch since birth and was still going strong. Take heart and read everything you can on bronchiectasis, blog people with queries on this site and you will soon be sure you are receiving the best medicine possible. Good luck and let us know how you get on. Take care Maximonkey

  • Thank you Maximonkey. That's very encouraging. I'm really pleased you're doing ok.

    Yes there's a lot of reading ahead of me!

    Thank you

    Catherine

  • Yes - Azithromycin prophylactically 3 times a week is rapidly becoming the drug of choice for bronchX sufferers who cant make the cheaper and older antibis work effectively enough for them. I've been on it for a year now and it's been very good to me. Would be interested to hear how your try-out holidya from it works out Maximonkey. I have been toying with the idea of trying to come off prophylactic and using one of the older ones again if I get a mild exacerbation.

    We should not assume that once an antibi has seemed to run out of effectiveness then it's useless for all time. When I got a hospital admission exacerbation 18 monthe ago I was so feverish that I was out of it and could not persuade the Thai hopsital I had checked into to talk to my local Thai pulmo consultant and they also waited 12 hours before doing a sputum test. Nonetheless they did something right cos I was pout of there fit and weel within 48 hours.

    I relayed the fact that I had been 'poorly handled' with no bronchX expertise and standard anti-infection IV antibis to a more experienced bronchX consultant (claims to have been the lead trainer of Thai pulmo doctors in bronchX a decade ago) I occasionally see this guy in one of the big international Bangkok hospitals when I do a CT scan to take back to the UK with me on my way to Papworth. He asked what it was and I said 'Fortum'. He said 'you are right that Fortum is an old general antibi and in fact we have stopped using it here' (implying big hospitals, or Thailand, not sure which). 'But, you are the third person with lung infection to mention that i am aware of that they have been quickly recovered on Fortum and we are starting to wonder whether it's coming back into efficacy; it's becoming apparent that antibis do not necessarily die a death for all time and some may have a second coming'. Maybe the world is not running out of antibis after all!

  • Fortum (as ceftazidime) is still widely used in the UK for serious respiratory infections. How effective any antibiotic is depends only on whether a particular bacterium is sensitive to it, and whether the individual can tolerate it.

  • Just sent you a pm Catherine. xx

You may also like...