Hi everyone, at last I have an appointment (Monday) at the Royal Brompton Hospital to see a consultant in regard to my bronchiectasis diagnosis in Spring of 2024. Up until now I have only had the knowledgeable people on this forum to assist me with management and medication etc. I gather many of you with this condition have a specialist consultant to help them so I am really hoping to find some professional support.
However, I have no idea what to expect from my appointment, which will involve early peak time rail travel to London, or how I should prepare for it, although I have jotted down a few concerns. If you have any experience of this to share, I’d be glad to hear from you, thanks.
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Seagullcity
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I can’t help, sorry. I haven’t seen a bronchiectstasis specialist, despite being diagnosed in 2012. The only information I’ve been given was by the asthma nurse at my drs surgery.
You really need a bronch specialist. Look for one on the website of your nearest large teaching hospital. Take the name to your GP and insist on a referral. GPs and nurses know nothing about it. As time goes on you will need the specialist's expertise to manage exacerbations and to give you a self management programme. In not referring you earlier to a specialist you have been at risk pf your lungs suffering more damage and the duty of care towards you has been neglectef.
Hi and welcome to the bronch club. There are members on here who attend the Brompton so hopefully they will tell you of their experience. I am with the QE in Bham for forty odd years with 2 fantastic bronch specialists in all that time. Each hospital has its own routines but there are some basics which they will probably follow. You will probably need to give a sputum sample so that they can see what colour it is and tell what is growing in there. They may do spirometry tests, xray or ct scan although these are probably arranged at seperate appointments. The doc will ask you how much you are coughing up. They will then decide on your management programme, which abs you would have for an exacerbation etc. Ask them to write to your GP to give you an emergency pack of the abs that they decide on as you will need to take them as soon as you feel an exacerbation coming on. Not all GPs like to give emergency packs unless the consultant tells them. Also GPs know very little about bronch and actually appreciate the help. I don't go to my GP if the bronch is playing up but phone my consultant's secretary. They are usually very nice and will get answers for ypu.They have their own physiotherapists who will teach you breathing tecniques and how to get the mucus out of your lungs every day to deprive the bacteria of the warm wet atmosphere that they.like to grow in. This self management is the most important thing that you can do for yourself.
I hope that helped a bit. Do come back if you need any more support. Therr is a lot to take on board at first but it does just become routine.
Thanks Swizzy, very helpful as always. The only thing the local consultant who did the diagnosis gave me was an emergency AB pack, which I have already needed once. The GPs prescribed me ana Salamol inhaler, which I don’t notice any benefit from using. The daily useful meds, carbocystine and mucoclear, I got my GP to prescribe after getting advice from people here. But I still have difficulty with lung clearance and inflammation etc. I’m hoping the session at Royal Brompton will be fairly thorough and will better equip me for self management. Cheers S
Good luck in getting just what you need. The Brompton is highly regarded by a lot of people on this site, which sounds very hopeful. You've just mentioned 3 of your concerns . That's the sort of thing to tell the consultant. xxx
Yes, I have a small list of issues to mention, but at least, thanks to this group, I’m going in with a reasonable amount of knowledge about my condition, which I confess I hadn’t even heard of when I was diagnosed.
When I first went, nearly 30 years ago now, I saw a Host Defence consultant on the first day & was booked in for a range of tests a few weeks later. But as you’ve got a very early appointment I’m wondering if they’ll do the tests on the same day. That’d be great!
I had blood tests, sputum (3 in total, I think), CT, lung function, nasal swabs, a sweat test (to exclude cystic fibrosis), a walk test, and saw a physiotherapist who taught me how to do lung clearance. Most of this is done on the Day Unit in Fulham Rd, but for lung function you go to a different floor & for the CT scan to the Sydney St building. I think I had some allergy tests too (that unit is also in Fulham Rd).
Then at the very end of the day I had a meeting with the consultant to review the results & confirm his diagnosis, and for him to explain “the plan” to keep me as well as possible. It was very thorough and I felt confident I’d be well looked after. I was exhausted afterwards!
Everyone there is lovely. In bronchiectasis, lung clearance is regarded as absolutely essential & you get a lot of support from physiotherapists to learn the technique they think will be best for you. The physios are an important part of the team & support is ongoing - if you’re finding clearance difficult you can arrange a telephone or video appointment to chat to them. They have numerous gadgets to help you clear your lungs effectively. Eg when I developed EDAC (a form of tracheobronchomalacia) they gave me a special mask to prevent my main airway from collapsing when I cough. This has been enormously beneficial.
I hope this is helpful but if you want to ask anything feel free to pm me. And good luck for Monday! 🥰
Hi Janedivney, thanks so much for your response, it’s very reassuring and just what I was hoping to hear. My appointment is also with the Host Defence Team, so I’m guessing it’s probably just a preliminary and I’ll probably have to return for tests etc. But if they did it all on the day it would be great. I’ll go prepared with packed lunch just in case. Wonderful to hear that they were so thorough and checked your diagnosis, including CT scan. And I know I need help with lung clearance as everyone hear makes it sound easy. And to go away with a plan of management in place, Oh joy! High expectations now and I’m glad I pushed for this referral, S
I don’t have that condition, but I am under the care of the Lung and the Heart specialists at the Royal Brompton. Both teams are excellent and I feel well looked after. All the staff are kind, caring and supportive. Good luck.
Hi. I can’t help as such but I’m under the RB as well as my local hospital for HP. My appointments with the RB are by zoom but they are excellent and very knowledgeable so just wanted to say you will be in good hands. I have all my testing done at my local hospital and the results are reviewed by RB. Good luck
It sounds like you will be in good hands Seagullcity, and am sure you will feel so much better once you have been tested and have spoken to the consultant. It's awful when first diagnosed, you are told them left in limbo with no help whatsoever. Even afterwards when suffering with problems and infections seeing a respiratory consultant doesn't help because they don't know how to treat you. Let us know how you get on x
I’ve had many appointments at the Brompton over the last few years and found it a wonderful experience. You will be treated with professionalism and respect. You won’t be left hanging around. The doctors I have met there have, without exception, explained everything to me carefully and in language you will understand. It is a world away from some of my experiences at other hospitals. Good luck.
I cannot help you with your question about the Royal Brompton Hospital but I would like to recommend that you use First Defence before you travel. The rush hour trains to London are always packed, ditto the tube if your using it as well.
My first appointment with respiratory doctor was as swizzy says. He also went through my family history and my own ailments. I was given allergy testing and a letter was sent to my GP asking them to give me a pneumonia and Hib jab. He also arranged for the physio to be carried out at my local hospital. I old ask for this to be carried out urgently if you’re struggling. Don’t be afraid to write your question down and refer to them. Good luck I hope the appointment goes well.
I can't offer any helpful tips regarding the appointment, but I can tell you that it's not necessarily all downhill! I believe you are going to the right place to get appropriate treatment. Once you have that and you know for sure what you are dealing with, things will get a lot better I expect you will feel a lot better.
I was initially diagnosed with bronchiectasis by a consultant at my local hospital and then I was referred to Royal Brompton where my condition was explored more thoroughly and was re diagnosed as emphysema.
Royal Brompton are a centre of excellence and are incredibly thorough, any test you may need will in all likelihood be carried out on Monday and you will have access to the results within 24 hours if you have the Mychart phone app along with any letters your consultant sends to who ever referred you . I was and am still incredible impressed by the service Brompton gives
That’s very encouraging, and I have already downloaded the MyChart app, thank you. It would be great if they did any tests on Monday but I’ll be prepared to return if necessary. It’s a bit worrying that people can initially be misdiagnosed for lung issues as treatments vary for each condition. Glad you got well checked out and re-diagnosed, hope things are better for you now, S
I was under the care of an excellent Respiratory Professor at the Royal Brompton some years ago. I'm sad to say I have never received that level of care since. Today I am far too poorly to travel to London but if my experiences are anything to go by you will be in very good hands. I'm a bit out of touch with train times now so can't help you with that but wish you well for your upcoming appointment.
I’m all sorted with my travel thanks, but good to know how highly rated this hospital is. Sad to hear you are too ill to travel; I hope things pick up for you but I guess we all have to make adjustments according to our abilities. Take care, S
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