Hi
I have read a few times on here, people saying they have a bronchiectasis specialist they can go to or talk too when they are feeling unwell, could you please advise me how you get to have a regular specialist, as I am becoming more aware that GPs are not much good with dealing with our condition, and I could really do with someone who can advise me properly.
Hi TG58. Yes, having access to a consultant who is an expert in bronch as opposed to a general respiratory consultant or just the GP is crucial. It can make a huge difference in how your condition is handled and the help and advice that you get in self management. These specialists are usually at large teaching hospitals. Look on the website for those closest to you and then.go through the respiratory consultants and look for one who specialises or has a major interest in bronch. Take the name to your GP and insist on a referral. Some GPs balk at this because they think that it is an insult to their capabilities but the best ones know that they have training only in copd and bronch is very different. My main relationship is with my specialist her secretary and her team. My GP happily cooperates with her because it takes the heat off him. If you have difficulty finding one in your area there are quite a few of us around the country with good bronch specialists and if you let us know which area you live maybe somebody can pm you with a name. You are very wise to be looking into doing this. There are some members on here who have done it and tell me that it has actually changed the quality of their lives. Good luck.
Great advice LittlePom. When anyone has a concern about bronchi I am always very pleased for them when you respond with your expert knowledge and advice. You are invaluable.x
Thank you. I try to help because there is so little out there for us. Experience and having been lucky with my mother finding a ‘maverick’ consultant who gave me a life when I was six plus being with the same excellent unit for nearly forty years have taught me so much. If I can use this to support other bronchs so that they can achieve a better quality of life I am happy.
Absolutely right Littlepom. I did that when my previous bronch consultant moved away and my GP was fine in doing the referral - he’d said he would refer me anyway but I found the name of the current bronch to save him the time in doing so.
Do you have a respiratory clinic you attend or is there one nearby? Get referred and see a consultant .
You need to say whereabouts you live. People may recommend specialists to you. You then need to ask for a referral from your GP.
'Bronchiectasis r us' is a great site to join online. Lots of knowledge & a very helpful group... May well get suggestion of specialist from there. Good Luck!
Some GP's are better than others at dealing with bronchiectasis, and some are happy to always take advice from the specialist. It took me a couple of years just to get a diagnosis because my then GP was reluctant to refer me. when he finally did it was to a general respiratory consultant who also did not diagnose me. Luckily I have a daughter who is a doctor and said she thought I had bronchiectasis and recommended someone in Leicester where I was diagnosed. Even then my GP was reluctant to refer me to the local specialist but after a lot of persuasion did. We have two specialists in cystic fibrosis/bronchiectasis with two specialist nurses whom you can contact at any time for advice. Up until the pandemic they all provided an amazing service and have given my GP detailed instructions about treatment etc.
If you go to the website of your local hospital and look at the list of consultants you may be able to find one with the right interests. However at present ours have cancelled all outpatient follow up appointment until the middle of next year!
Hi TG, I do not have a specialist I can ring as in Doctor Specialist, however, when I was first diagnosed I was given the name and telephone number of my Asthma/Bronchiectasis/COPD nurse, she is wonderful. I have rang her a few times over the years and she has never failed to ring me back and give me the best advice about my condition. If you have a consultant he/she should have a nurse who helps all their patients when they need it. If you haven't got these details then ring your consultant's secretary who will I am sure give you the information you require. Take care, Maximonkey
I have great Bronchiectasis nurse in Exeter
I have been considering moving to Exeter to be nearer to family but as a bronchiectasis patient myself, I have been wondering what the respiratory ward/team are like there as I have to go in to hospital regularly for IV antibiotics as they say I am not a candidate to have them at home. Any help/reassurance you can give me about your local services would be great.
Very good Consultant at Royal Devon & Exeter hospital. I got rapid treatment after repeated Chest Infection Haemophilis. Had CT scan very quickly & seen by Bronchectasis Nurse for Breathing exercises & nebulizers on first visit after diagnosis. Felt they really listened to me & advised GP on Rescue Antibiotics etc
Thanks for all your replies and hopefully get some info online, I live in Milton Keynes but I would be happy to travel to surrounding areas, even London if I had too, I was referred to a surgery in Bletchley, which is kind of part of Milton Keynes.
About 18 months ago before I had the CT scan and got diagnosed I was referred to the surgery because of get breathless, they have a respiratory nurse there, who tested my breathing on a little machine you breath into, she said the results of the test wasn't to bad, but she gave me a brown inhaler to try for six weeks, but it really didn't make much difference, she thought I might be asthmatic but after I tried the inhaler and it never made any significant difference I was taken off the books, I will add at that time I lost over a stone in weight as I was overweight, I started going swimming then after the summer I started the gym again, I am also a postman so walk a good few miles a day which obviously helps. Anyway after the CT scans in October 2019 I was diagnosed with Bronchiectasis, only thing is they never told me the results till April of this year, yes 7 months later, and right at the start of covid19, which the doctor thought I had, I was again referred back to the same nurse, and as you can imagine I was fuming about getting diagnosed 7 months after the event, to be honest again I wasn't that impressed with her, I had had a prescription for a Fostair inhaler and carbostiestien by a lokum GP who was at the surgery, when I told the nurse she told me to stop taking the carbostiestien as my condition was mild, I did stop for a couple of days but I started getting sputum again so I resumed taking the carbostiestien, but in my conversation with the nurse I asked why I was taken off the books again, and she said we don't keep people on forever, which I thought strange.
Anyway 6 months on now and I seem to be unwell more than I am well, I also have diverticulitis and acid reflux, I spoke to the GP last week and told him I was very anxious about being so unwell all of the time, I said I wanted the camera in me again, but he said they wil only tell you what you already know, you have bad reflux acid and your on the strongest esemaprazole tablets which can't be increased, I am beginning to find their answers incredible, and that's from one of the better GPs, I was also sent an appointment to see the respiratory physio in December, I had to really plead with the same GP to bring it forward, as I felt suicidal from feeling unwell, he agreed, but he said I'm getting stressed which is making my reflux worse, more acid going around my body and also into my lungs.
I find it very weird how doctor's think things stay the same, I am going to give it till after the weekend, and see how I feel, I have one more antibiotic to take, and I still feel unwell when I got home from work today despite nearly finishing the course of antibiotics, I seem to be better whilst I am moving, but I obviously can't do that continually. After the weekend I think I will demand to be properly examined by someone else I will make a formal complaint as I can't live this way, maybe the threat of complaint might give them a kick up the arse.
Are you willing and able to travel into London? The Royal Brompton Hospital is fantastic. I’m under them but also under a general respiratory consultant at my local hospital under shared care. I’m told this isn’t uncommon.
I know the feeling about reflux and the acid going into your lungs. It has caused me an awful lot of problems and it was experts in Birmingham who discovered that the constant oral antibiotics I was taking was making the reflux worse which was then causing more problems for my lungs. They decided I should only be given antibiotics intravenously and once the antibiotics got to work, because it made my asthma worse, I have to go into hospital for my treatment. I'm now at a hospital that doesn't have any specialists and my health has deteriorated terribly so it is definitely worth seeking out the right treatment. Littlepom is right. Having been under specialists previously there is a massive difference in the level of care between those that have the knowledge and expertise and those that don't. I'm considering moving again because of it.
If you can travel to Birmingham my female specialist is at the QE. The giving of inhalers as a standard treatment for bronch without there being asthma or emphysema present is a sure sign that a general respiratory consultant is treating it as copd. Antibiotics through various delivery systems and scrupulous lung clearance are the standard basic treatment for bronch. Some people do eventually find that an inhaler is an added benefit. Some like me nebulise saline to help loosen the mucus and some find that taking carbocystein helps with that. Although I can’t tolerate it. It is a very complex condition. We are all different and it changes how it behaves all of the time. No wonder we need a bronch specialist!
Littlepom I would have no problem going to Birmingham but as I am based in Milton Keynes, how would it be feasible for my GP to get me there, surely I'm out of the jurisdiction. In answer to other part I am taking antibiotics regularly, to regularly in my humble opinion, when I finish one course about a week later I start feeling unwell again so have to ask for more, and this is despite taking the 3 times a week preventative one, I am still also taking the carbostiestien 4/6 times a day, I am waiting for an appointment with a physio to help me to clear mucus and breathing exercises, but that was arranged by the MK hospital for December 6, which I told them I couldn't wait that long, apparently theirs a backlog because of covid19, so my GP wrote to them last week to try bring it forward, hopefully I will get an appointment sooner.
Is your specialist at the QE very good then ?
Look on the internet or You Tubefor the active cycle of breathing. This will teach you what the physio will in how to get the mucus loosened and out. Some kind person who is better than me with tecnicals may put the link up for you.
You are probably being given the wrong antibiotic in the wrong dose for too short a time. Only the specualist can decide on this. We are entitled to go to any centre we want for specialist help. She is on the committee of the British Thoracic society and co wrote the latest guidelines for treatment of bronch. Best is to call her secreatary and explain that you want your GP to refer you and will she accept you. Then you will be armed with that conversation when you go to your GP. I will PM you names.
Thanks again littlepom, I have replied to your message 🙂
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