Last week has been really busy but really busy in a good way!!!
I had a day which was a bit of an AUKCAR day- starting with a PPI teleconference, moving to discussions about the Children and Young Person’s Group before finishing with a Webinar for the PhD students. A busy day but lots accomplished!
The Children and Young Persons group is really taking shape and we have a number of enthusiastic young people contributing. Our one hurdle just now is trying to work out a name which can be catchy but still gets the point of the group across. My imagination is very limited so coming up with a name or acronym is defeating me. I am sure something will come up between those of us involved in the group (I hope!!). Back a year ago when I was first asked to be involved in the CYP I never imagined it would be as it is. I am not sure what I was expecting but having had no experience in helping to run a group like this I really didnt know what I would be in for- all I knew was I wanted to involve young people in research for asthma after my teenage years have been effected so much by it. In time we hope to have the group spread to different areas of the UK so all asthma researchers can have access to young people for input into their research.
For me one of the highlights of the day was taking part in the webinar for the PhD students- the next generation of asthma researchers. A slightly odd experience having never taken part in a webinar or any sort of video conferencing- but after a while it was not too bad and I got used to the changing screens and seeing yourself on a screen too!!
When I first joined AUKCAR I made an assumption that everyone involved in the centre and its research would know all about asthma, inhalers and the different medications. I guess I was shocked when I sat down to dinner with one of the students to discover they didnt have much of a knowledge about asthma. As the conversation moved on I found out that just because students were doing a PhD involving asthma did not mean they were a medic or from a medical background. There are nurses, engineers and a variety of other backgrounds which would never expose many of them to asthma and the physiology behind it. There is something overwhelming in a way that people who are not always connected to asthma want to make a difference to the lives of those with asthma. I don’t know how to describe the feeling- part of me questions it thinking “why asthma..its only asthma after all” and it is far from one of the diseases which is “sexy” in the research world where there is a huge amount more funding. It is just asthma- but just asthma effects so many people in so many different ways that it does need more recognition and investigation into why it can be such a life threatening disease.
After discovering the variety of backgrounds and having chats with the students I decided to suggest the possibility of doing some asthma education and speaking to the PhD students about living with asthma and how it can effect daily life. Im not sure if i expected anything to come of the suggestion but it was great to find out that a webinar was planned between 3 different universities to learn about asthma and also hear our experiences of living with it. For the first time it was done I was pleased with how it went. Having 2 PPI members there swell as one of the researchers gave the students different perspectives of asthma and how it is not the same in everyone. Myself has the slightly more uncontrolled asthma whereas the other member has relatively mild asthma so his experience is very different from my own.
I hope the students got a lot out of it. I tend to look back rather critically at how I have done when speaking and did feel I could have improved and made it a bit clearer should I need to do it again but we did have good discussion and the students all had questions.
Sitting in at the end hearing the students update each other on how their respective PhD’s are going was good. Some are much more engaged in PPI than others and it was good to see where there is a gap for PPI in the some of their projects but more so I was able to see the potential for where our CYP group could give input to help the students.
There has been lots going on but all good and keeps me busy!!