“Things just happen” doesn’t sound like much, may not even mean much but some things that just happen do so for a reason and can result in life altering and life changing experiences. I have had lots of “things just happen” moments in my life. I guess 2 of them just now stand out so much more than the rest.
The first-
i just happened to get pneumonia which caused damage to my lungs resulting in Brittle Asthma, numerous hospital appointments, hospital admissions, drs appointments, tests, procedures, medication, side effects, giving up my career, changing my career, changing my life as I knew it but…
had this not happened then neither would of the events which have all occured since the 5th May 2014 so..
The second-
I just happened to decide to put together a montage of photographs I have collected over time to show that despite brittle asthma you can still do things in your life which you enjoy.
As a result of this a series of events occurred which have been totally life changing, overwhelming and something I never imagine I would ever even consider being part of. What were these events..
I have to go back to May. World Asthma Day and the publication of the National Review of Asthma Deaths which caused huge shock due to the sheer numbers of people needless dying as a result of asthma. I was asked to do an newspaper interview which would be published on the 6th May discussing asthma and Drs not treating it properly or listening to patients. This was published in the Guardian newspaper. As a result of this I was interviewed on BBC Radio Scotland about asthma and medication compliance. I was then asked to be interviewed for the 1800 news however had to decline this because it was my step dad’s 60th birthday so was not able to take part. I was invited to the Scottish Parliament for the launch of the new AUKCAR National Research Centre of Excellence for Asthma. This was an amazing experience and because of a chance meeting with someone there I am now in the very privileged position of being one of 4 PPI (patient and public involvement) leads for AUKCAR. I specifically am lead for the young persons group where we will be involved at looking at the needs of young people with asthma and where the research needs to be focused.
So what is AUKCAR and why am I so excited by it and making such a big deal?
Well AUKCAR is a totally new concept. Instead of researchers and different institutions competing for research they have now all joined forces to tackle three main issues and try to:
1) Reduce Asthma deaths
2) Reduce hospital admissions
3) Increase medication compliance
These three issues have their own platforms with specific people looking at different research to be done to improve these problems however different they also will all be working together because if medication complain ace is improved in turn this will reduce asthma attacks which can cause hospital admissions and sometimes death as a rest of an asthma attack.
PPI in this project has a huge role as all research proposals will be reviewed by lay reviewers and the PPI team to ensure that research is not being done for the sake of academia but to actually make changes to those suffering with asthma. I am so proud to be part of this. We will be working with PhD students, early and mid career researchers and professors who are doing research into asthma. When applicants apply for grants to fund their research they will need to make sure they use PPI in their research process and use our advice and expertise.
Up until last week I had attended conference calls and reviewed research summaries but on Wed 12th Nov I travelled down to Oxford for the first annual scientific meeting of AUKCAR. The meeting has been amazing, totally overwhelming, tiring but an experience I would not change for the world and cannot wait until next year for the 2nd Meeting. In the meantime I have a lot of work to do as many researchers have wanted my input and advice. I will put down the Meeting in my next blog post!
ANONYMOUS-ASTHMA 