I am one of the doctors on the asthma research team in Birmingham. We are arranging an evening event for people who have asthma, with the purpose of providing some asthma education in general, plus as a platform for advertising up and coming research trials in asthma in our local area.
I wondered what kind of topics people would be interested in hearing about.
Provisional date is 27th March, 7-9pm at MIDRU, Heartlands Hospital site. Free dinner available.
Thanks
I am not in the Birmingham area but think such an event is an excellent idea. There is more awareness and events for cancer/diabetes etc. Perhaps, action plans, treatment options, guest speakers, a 'behind the scenes' tour of the facilities could be areas to consider.
Don't know if you are new to the forum but part of the terms & conditions are ""not to: post messages to ask for participants for ANY research, be it asthma-related or not: Asthma UK insists on vetting all such requests, and so you should contact them via telephone or e-mail in the first instance"". If you have not, I think the contact is initially webeditor@asthma.org.uk. You may find this post edited or deleted by moderators.
Also, what does MIDRU stand for?
I dont live in the B'mingham area but think this is a very good idea. Good topics to cover would be action plans and the different sorts of medication available. Good luck with the evening - hope it goes well.
It sounds great. From my point of view I would love to hear about treatments for difficult and severe asthma that are not perhaps as well documented on the internet. So much seems to be geared up for those on the mild/moderate end of asthma (rightly so I suppose in that thankfully for many asthma is very treatable and controlled), I know I have felt very alone at times on the journey.
I'm not near Birmingham else I would love to hear what's discussed.
It sounds a good idea it could be useful to know about new asthma treatments particularly for severe brittle asthma
Although I do not live in the Birmingham area I would be interested to hear what's discussed
I don't live near Brum either but this sounds great so wish I could go! If I were going, perhaps some discussion of when asthma isn't straightforward like Sarah1234 says - not even necessarily just when it's severe or brittle, but atypical (EDIT: JF has put it much more succinctly than me!)
I don't know how easy this is to discuss as there's only so much time! Just a thought as being on this forum I've learnt asthma is not as straightforward as it's sometimes made out to be (eg not everyone wheezes) and it would be good to know even in brief what's happening on eg researching and diagnosing asthma when it's more challenging.
I wish this was in my area!
I would be interested in researchers discussing atypical asthma.
I'm also not near Birmingham. Any chance of having a webcast?
pf id like to know more about and why does asthma turn brittle as mine did wish I was near you cause id be there in a flash lung willing the flashness of course lol x
Hello,
My care is under Heartlands (I've seen you a couple of times there and in Wolverhampton New Cross).
I guess it depends who you are tailoring the education to? those who have limited understanding of asthma or those who have a moderate understanding of asthma and the treatments.
I would be interested in hearing about the trials which are taking part even if I was not a suitable candidate for them, as any improvement or discovery in asthma care is a positive one. Perhaps you could discuss recent research findings and the impact this is having or is going to have on asthma care and control.
One topic that I would find useful is advice and discussion on the long term use of steroids (as short courses and as maintenance), especially prednisolone and it's side effects.
The evening sounds like a good idea and I hope you get lots of support for it!
Alice
Opinion
Hello
The evening sounds a brilliant idea and I think that what Alice has posted about the prednisilone issue would be good as over the years I have heard conflicting views (I haven't been off pred since 1998) of usage and the long term side effects.
Another issue that is important is support, I think that sometimes people are too scared, frightened to ask for help and information about their condition and I believe that knowledge is power. People need to be educated about who their local respiratory nurse is as mine is fantastic.
Research findings are encouraging and they should be more widely published.
Hope this is helpful
Ruth
I cant make it either due to location .... New treatments would be a good topic
ESP for non allergic type asthma .....
Information about the national database for asthmatics .
Airway remodelling what can be done to prevent and minimise ,...
Steroid induced diabetes ..... Very little info available on this
Bronchiecstasis - how often should this be followed up and frequency of repeat scans and when is
treatment considered .
I wish you luck and success for the event
hi , I work as a staff nurse and had just a brief understanding of asthma before, but just been diagnosed in september. My symptoms are wheezing and breathless but mainly cough which i wasnt aware happens with asthma but this cough i had for a year was one of the ways they help identify it was asthma. Allergy is dust (good job i work in a hospital thats cleaned constantly ).
I was never aware that there were different types of asthma so these would be helpful as topic
The other thing that can be confusing is knowing how much salbutamol you can take in a day I sometimes suffered because I wasnt sure how often I could take it.
Education about making sure you get an asthma nurse and action plan set out is useful too.
knowing about different inhalers such as tritropium, seretide etc.
Prednisolone use and any side effects of long term use.
Also just a random thing here since diagnosed and commenced inhalers have had the most horrible cramps, even in thigh muscles, potassium levels ok, but have been told anaemic hb 10.6 so not sure if cramps related to inhaler use, or the anaemia, but reaseach in to inhaler use and cramps may be interesting as I have noticed other people have had this problem too.
i would be very interested in the result of this event (why not post a link to the event if you allowed to i would like to read about the information that is given)
good luck with the event
TJ - MIDRU midru.com/
I don't have anything to add to the topics other people have already suggested, but I'd be very interested in attending this!
I'd be interested to hear about the link (if there is one!) between asthma and mental health, and also about identifying and avoiding triggers particularly in non-allergic asthma.
I wish I lived closer, too.
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