The last few days I have been down in Manchester at the Annual Scientific Meeting for the Asthma UK Centre for Applied Research. It was a great few days. all kicked off by an entertaining dinner with the centre director and post grad and network co-ordinator who learnt the value of Twitter and what you can do with it. It was with delight that one member found they were my top media tweet and wanted to retain this title for the whole meeting. (no one really knew what top media tweet was but battle had commenced).
I was particularly excited about the meeting for two main reasons because I was co presenting about @SPEAKAsthma and also I was going to hear Prof Iain Pavord talk who is in my eyes the asthma guru and brought Bronchial Thermoplasty to the UK. Listening to him talk was amazing. It gave me a renewed sense of hope that there were different treatments coming out for asthma, namely Mepolizumab. His different views on the use of oral steroids was interesting as I had always thought steroids would treat all aspects of asthma but now I know otherwise. It does make me question the role of oral steroids for myself. I have never been convinced that they are as good as medics make out. It will be interesting when I am next in clinic brining this information I have learned. Prof Pavord also knows my consultant and spoke highly of her. I think highly of her but that is because she has helped me so much, but when you get the top guy in asthma saying your consultant is good, she must be good.
Our talk about @SPEAKAsthma and a new project was great and we were able to show our recruitment video and a flipagram that we put together. I did get a bit nervous and stumbled over my words sometimes but I think the PPI Research Fellow I was presenting with caught my bad bits and saved me.
Otherwise the meeting was good. It was different this year from last year in Oxford. I was very new last year and really didnt know many people but this year I have had the chance to work with a lot of people and met them over the year. This year we also had a big PPI presence as there were 7 of us attending. The great thing about the meeting and the centre is that they value PPI input so much and are really inclusive of it. There is no one who didnt make us feel welcome. Even at breakfast and other meals they would stop conversation and welcome us and speak to us wanting out advice and input on their various projects.
There is so much to talk about in the meeting and way too much to put down on paper but my titter feed sums up the meeting as I tweeted throughout it. If you want to see go to @just_TUX to see my tweets.
The second day was really frustrating for me. It was really interesting but I couldn’t contribute as much as I wanted because I was up most of the night coughing and feeling really tight chested. It was horrible. I was determined not to let people know I didnt feel great but by the end of the day I felt exhausted and the effort of breathing was so much. I am really annoyed at myself for pushing through and not just excusing myself and resting somewhere. I have this bad mentality where I won’t let my health stop me doing things at any cost. By the end of the day at the train station on the way home I didnt have the energy to hide how I felt anymore and had to just sit on a bench and try catch my breathe. Once on the train it was impossible I felt slumped and had my neb. I must have appeared so anti social but I was spent and on empty. It was such a shame as the end of the last meeting was such a high and the train journey on the way back was full of chatting and discussing different things we were going to be doing in the near future.
I am really looking forward to the next few months. There have been lots of different projects that people want PPI input for and also the SPEAKAsthma group to which is exciting as they are still really new so the group is only just starting out but it bodes well if people are keen to speak with them and also have a group set up in London too!!! The future is looking good for SPEAKAsthma and PPI!!!