My HealtheVoices19 experience!

Last night I was catching up on reading some blogs and came across one that was written by one of the other people who attended HealtheVoices (HeV) who opened her blog post with my exact thoughts. She had been drafting and redrafting posts about her experiences of HealtheVoices and not knowing quite how to write it. She came down to the point of just getting it out and putting it down in a post. So this is what I am going to do as well because like her I have been going over how to write my experience and then rewriting it and never being happy or knowing quite how to word it.

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So here goes…

Leaving the UK to go to Dallas was a mix of nerves and excitement. The lead up to the HeV event was so positive and the support from everyone was there right from the start so I was feeling at ease but also felt a little is this really going to be like this once I am there too. A small hiccup at the airport but I was soon at the hotel and getting ready to settle in.

There was no real plans for the Thursday night. There was dinner but it was a buffet and you could just go down and eat when you wanted. I am never very good at these things and went downstairs several times with the intention of going in to the dinner room but I kept bottling it so would head back up to my room. I was too nervous, and tired because I was still on UK time and had been up for about 24 hours at this point, but I needed to get over jet lag so I could enjoy the conference without crashing, so I forced myself to go in and join a table. I am so glad I did go down. The slight awkwardness of plating my food and all the time thinking which table should I ask to sit at, who won’t mind if I join them, there was 101 things flying through my head but actually some of those who I had my first meal with in Dallas are also the ones I had my last lunch with as well. I did have that bit of security with me at dinner though- I had my name badge/lable/neck thing so anyone I met knew my name, knew I was speaking but also knew that it was my first time attending the conference.

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When I have attended conferences in the past I have felt at ease, and with each conference I attend and speak at I feel more confident but this was different. When I have spoken at conferences I have been there and what I am speaking about is my specialist interest and my experience, I tended to be the patient giving my opinion of essentially being an expert patient. This was a different ball game. Everyone there was like me, we are all experts at living with our own conditions and doing our own thing to raise the profile and difficulties we face trying to live a functional life.

I have never really thought of the work I do with asthma as advocacy, I actually didn’t like the word advocacy but attending HeV I came away feeling that maybe it was and I was an asthma advocate. People often ask me what drives me to do what I do, how do I come up with content, ideas etc. I never really know how to answer because I have never thought about why I do these things. I just do it because I hope that by sharing my story maybe people or even just one person might be able to take something from it and their experience will be a bit easier.

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It sounds cliche but after my initial nerves everyone was so welcoming at the meeting. Wether you were a first timer or had been at all the HeV meetings in the past everyone was on the same level- we were all there for one reason. Everyone there is motivated to help make a change. There was a variety of people who have had a condition all their life, then some with conditions that vary, go into remission or are cured from it but through their experience they are sharing knowledge gained, experiences which were good or bad.

I still really am struggling to put into words all my emotions from the meeting but I think the photos speak for themselves.

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So where do I go from here??

I have a few projects that I would like to pursue the most pressing one is to try and get rid of all the stock images media outlets are using which are subconsciously promoting poor inhaler technique. Almost every day I see a photo being used on a media article which shows a child or adult using a MDI (metered dose inhaler) with no spacer and even though there is no spacer the technique is not good either. In the UK there is an inherent problem with asthma management and self management resulting in high death levels from asthma attacks which can be prevented. One of these preventions is correct inhaler technique.

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And a last disclaimer:

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#HealtheVoices 2019

I am super excited and cannot remember if I posted about this before but now that everything is getting to the final stages and it is really going to happen I thought I would write a post all about this next exciting opportunity.

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HealtheVoices is not something I had heard. Fairly recently while looking on Twitter I came across them and the conferences they have done as well as the amazing patient advocacy. HealtheVoices provides a ground breaking leadership conference for those involved in advocacy for their own health conditions, the communities around them and others as well. The conference is to empower those in advocacy to continue the work they do and get as much impact as possible from it. They have been organising these conferences and this year it will be their 5th event.

I can’t remember applying for the conference or filling in the form so when I got an email in January asking me to be a speaker and lead a session I was shocked but also had a huge sense of pride that despite asthma dictating my life I have had so opportunities as a result of it which are truly once in a lifetime events.

The event this time is over in America. I fly to Dallas Texas in a weeks time and am so excited. I have never been to Texas and will have the chance to have a few days being a tourist out there to.

We have just got off possibly the biggest conference call I have been part of. I think there were 69 participants in total. Most of these people were members who are coming to the conference and not all speakers. They said there was well over 350 applicants so to be short listed to give a talk is probably one of my greatest achievements.

The one down side (if you can call it that) to this is I have had to 1) prepare what I am going to say and 2) put together a power point presentation. Many who read this will know my aversion to slides and my slight aversion to preparing. As Allison would say I just like to wing it or busk it!!! For this though I cant. So I have put together some slides myself which I think look ok just waiting on the legal team to give them the ok! I have also written most of my talk. 45 minutes is a long time!!! I will be giving my talk a test run with my Mum so fingers crossed that goes well, may even run it by my little brother too depending how brave I am!!!

Public speaking is something I have grown into. A good friend of mine and PPI colleague Elisabeth likes to recall the story of when we first met when I was so shy and quiet that she struggled to hear me speak. Now she struggles to get me to shut up!!! With every talk I give I can feel my comfort with speaking grow. I still get very nervous at certain events and was so thankful on some occasions that I have had a lectern  to stand behind because my legs were shaking so much but on the whole I feel ok when I am speaking.

I am so proud to be able to go and share my story and tell others about how great being involved in research is, all the different things you can do and how to get involved. I am also teaming up with webMD too which will be awesome as they have a huge online platform.

Will be tweeting and blogging from the conference if there is time although it seems like a jam packed program. The conference will be streamed live so will post the link for this when I know it. Remember though there is a time difference!!!