The meeting in Oxford was one of the experiences which will go down in my memory as one of the greatest things I have been involved with.
The meeting was over 2 days in which various different things were discussed and we had various speakers as well as speaking ourselves as part of PPI.
The majority of the members at the meeting were a mixture of research professionals, members from AUK and students undertaking a PhD. We were also in the company of some very eminent asthma researchers who made up our International Advisory Board.
For myself as part of PPI I was able to choose which meetings I went to. I did go to most of the meetings other than one which was when we had our own PPI meeting. It was a great opportunity to meet 2 of the other PPI leads. I had already met one of them who travelled down from Edinburgh with me. We had a fascinating chat all the way down and discovered she was one of the original asthmatics who took the original steroid based inhaler trailed by Harry Morrow Brown. The other PPI member at the meeting was a gentleman whose daughter sadly died of asthma. I was insured by how he talked and it gave me confidence to share more of my story when we spoke.
Our role as PPI Leads in the meetings were to voice our opinions as patients. Although all the researchers had very good knowledge in Asthma they have not directly suffered from asthma and do not know the experiences we have or where we need the changes etc. By us being there we were able to give relevant input. I was very nervous at first but after hearing others say their piece it was easier to speak up so I did and I hope it was useful to them. It was very interesting as much of the talk was about England so having PPI from Scotland was good to make sure Scotland was included.
Our PPI co-ordinator had a slot in the schedule in the afternoon to talk about PPI and what we can do for the researchers. This was the chance were we also spoke about why we got involved in and what we hope to see from the centre.
To say I was nervous was an under statement. Knowing that I was about to stand in front of all these highly highly intelligent people who knew so much about asthma was totally over whelming. I was the last of the 3 of us to speak. I lost my way a bit when speaking but had a big impact at the end. The way the previous speaker spoke about his daughter I had to share my views as this was the chance to make all these people see how real it is.
I spoke about how I had not gone looking to join AUKCAR as PPI but due to events happening I found myself in the position where I would be able to do something worthwhile with my time. Asthma has always effected me and dictates much of my life everyday. By being involved I can help make a difference to other asthmatics and make a change. I hope that it will give me the chance to reduce my hospital admissions and make it more manageable. I am specifically involved with the Young Peoples Advisory Forum because for me as a young person suffering with asthma having changes made just now means we can take them with us into adult hood and have a happy healthy life without asthma restricting us. The importance of AUKCAR to me is that everyone involved is not doing research for the sake of academia but to actually make a change to peoples lives.
I finished my part very emotional. Asthma has such a large impact on my life and through support groups I have met many wonderful people, however 6 of these people have all died from Asthma attacks which according to statistics 90% of them would have been preventable. I finished by saying that AUKCAR would be successful in my eyes if that number stays at 6 after the first 5 years.
I was at breaking point when I was finishing. I had to turn away from everyone. I was not the only one in tears however. As I sat down i was aware of how many others were in tears. This included the chief and deputy chief exec of Asthma UK Kay and Sam. The impact was made because the emotion was so real. Everyone got to see how asthma death actually effects asthmatics and how real it is. I was able to share that I have been in resus, hdu, itu and had feared for my life wondering what is going to happen next, feeling absolutely exhausted just wanting to give up but being to scared to give up.
At the end of this section the number of members of the meeting who came up to me with tears in their eyes thanking me for sharing my story and showing real emotion. It was a wake up call to them all. I was so glad I shared how asthma can effect me and others. I was really nervous and looking back could have put together a much better speech but what I said I managed to make an impact.
Kay Boycott chief exec of Asthma UK has asked if she can use what I said so I will need to keep a look out for that.
Over the course of the meeting I had so many interesting conversations with a range of people. We had a drinks reception in the evening where our PPI co-ordinator mentioned how a lot of people wanted to speak to me and get my input and views and be involved in different projects.
I have come away with a few very interesting projects and things to follow up. The main thing that excite me from it is the prospect of being involved in a study looking into asthma treatment compliance.
There is so much I could write about from the meeting so if there is anything specific anyone would like to hear about please email me and I will write about it.