Hello everyone, hope you are all ok, it’s been a while since I was last on her writing a post.
Last week I listened to the Bronchectasis webinar that was broadcast by Asthma +lung Uk, it was so interesting and exciting to hear news of a potential treatment for inflammation being licensed for use in the near future.
Did anyone else listen? What are you thoughts and feelings about the news? Will anyone else be listening to the Bronchectasis conference in Dundee this weekend ?
Didn't listen as my hearing isn't great and wrong time of day for me, but good to know it was positive and that the powers that be are at last starting to help. Thank you for sharing 😊xxx
I wanted to listen but my zoom wouldn't let me in. I hope to catch up with the version available on ELF's website.
it was excellent! As someone who gets very little support from my surgery, and the secondary care at outpatients is a total shambles, I found it very informative and reassuring. I am literally bumbling along managing my condition by myself, with advice from the helpline on this site. So to hear that research is increasing, and that a promising new treatment is awaiting approval, was music to my ears!
Hi. I also listened and was very encouraged. I have asthma as well as bronchiectasis. It seems everyone is only interested in the asthma and I too have to ‘sort myself out’ with the bronchiectasis. From my respiratory appointments you wouldn’t even know I had it! So yes great news it’s coming to the forefront a bit more…fingers crossed!
I listened to the webinar yesterday. Informative, but I found it a bit depressing, because there seems such a gap between what the experts are saying and the lack of knowledge at local level. Even the nurses who ran the pulmonary rehab course didn't seem to know nearly as much about bronchiectasis as they did about COPD.
I agree, having recently moved health authorities I have found support lacking here. I visited the GP on Monday and tried to discuss the webinar and the treatments but he was so keen to get me out of there, I felt rushed and unheard. Sent away with yet another course of steroids and another week of anti biotics with advice to ring 111 if things got worse. 😥
Luckily I am quite tenacious and will continue to fight for referral and further tests to determine the best treatment for managing my condition.
If you haven't had a referral yet, you jolly well need one. Good luck. A pity you've come up against such an unhelpful GP.
To be fair he said he wanted to get this flare up under control first and then start the referral process!
He was my doctor when I had pneumonia over 14 years ago and he actually handed me a letter from a consultant from the follow up and it states in there that I had bronchiectasis then. I was never told and lived with it in hindered until March 23’
I'm not sure that it's a good idea to wait till a flare up is controlled, but then I'm not a doctor, just a rather impatient lungie.
Hopefully this link will work for those of us that couldn’t make it. I thought it was very good and made a nice change to feel fully understood.
Thank you for the link I will have a listen today x
Hello. Can you please guide me to the website . Thanks
Thanks for posting this. I wasn’t aware so will definitely watch.
Thank you so much for sending the Brochiectasis Webinar through it was really informative. I wish I had access to a doctor like Dr. James Chalmers. Unfortunately my request to be referred to a Bronchiectasis specialist has been refused. It took very many years of continuous chest infections before I received a diagnosis. On the webinar there was a link to sign up for research etc. I was unable to get it to work. Do any other members have the link? if so could you please pass it on to me.
Bronchiectasis.....
BRONCHIECTASIS AND PIP
Constant infections 
Bronchiectasis
