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.


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.


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.


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.




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.



And a last disclaimer:


My Fight Against Asthma- the app

Living with any chronic health condition can be tricky. Not only dealing with how you are feeling on a daily basis but everything that goes with it to keep yourself well- the medication, self management plans, anticipatory care plan, Drs appointments, hospital appointments. This is just a small selection of some of the things you need to juggle and remember to achieve the best possible health you can for yourself.

When my asthma was very controlled and not that bothersome all I needed to keep track of was my peak flow diary and making sure I had enough of my inhalers. But now it is a totally different picture. I have a folder full of various documents to keep track of what is going on and who I am seeing when. It can become very confusing and often things do get forgotten. Despite my efforts I have never found an easy manageable way to keep everything organised and in one place, but that was until now. In the very early hours one morning I stumbled across a post online advertising My Fight Against Asthma app which aims for the user to have an easy place to store everything about them and their condition. The creator was looking for people to test the app which I was keen to do. I have now been using the app for just under a week now and have found it one of the best I have used.

Why do I feel it is one of the best? Because the creator of the app suffers from a chronic health condition himself so has first hand experience of the difficulties conditions can throw up and also what people want to be make living with their condition easier.


Who is behind My Fight Against Asthma??

Heres is the developers story:

“I have Cystic Fibrosis and I got really sick a couple years ago. I stayed sick for quite some time so last March 2014 I decided I wanted to start learning how to make apps to help people with CF. I released my first app (My Fight Against Cystic Fibrosis) in October 2014 and then wanted to expand the “My Fight” series to help other communities. I reached out to a few different communities that had some type of illness and I got the best response from the Asthma community. I then quickly got a group of people together to help me better understand how asthma is treated and what kinds of things they track and would like to see in an app that they could use daily. I started designing the app, got it approved by the group that I put together, and started programming it in February 2015. I wanted the app to be something that would help patients manage their health in a more convenient and efficient way. The best way I found that to be is to directly stay in touch with the patients I’m making the app for and develop the app around their needs and requests. Instead of an app made by a pharmaceutical company I wanted to develop an app inspired solely by “the people” trying to help “the people” of the Asthma community.”

Over the years I have tried various apps which have been produced to try and keep track of what is going on with my asthma but have found them all very restrictive in what they can offer. Looking back I wonder if this is because they are created by companies in association with their pharmaceutical products and don’t have much knowledge about what the needs to the person is.

What makes this app so good??

It is user friendly and easy to understand. For me a couple of functions stand out which no other apps I have seen have. First you have tabs to record all different areas of your asthma.


Recording peak flow is one thing every asthmatic should do almost from pre diagnosis stage. This section of the app I particularly like because not only can you define where your red, yellow and green zones but you can input comments about what action to take when your peak flow results falls in a certain zone. These comments can be specific to you rather than the more generic plans which will often instruct you to increase you inhaler and seek medical attention (or along those lines). Being able to do this means those with slightly different action plans can input their individual needs.


Another aspect of the app is that you can set reminders for a variety of different things: medication, appointments and peak flows. You can be alerted by setting an alarm in the app to remind you to take your meds or when you have drs appointments. there is also a section for knowing when to request a repeat prescription.


As the app is still in the development stages functions are being altered to make them really fit the needs of those with asthma. Having patient input while designing this app I think has made it stand out from other apps. I cannot wait till the app is released as I think it will be a very useful tool for those who find it hard to keep track of everything but also those who are newly diagnosed or people who have trouble getting into a routine and remembering to take their medication. Setting alerts can prompt you so you never miss a dose.

If you are not sure about what information to put in the various sections of the app such as the peak flow ranges you can speak to your asthma nurse for help in determining what is needed.

Are you interested in this app and want to test it too leave a comment on this post and I will pass it on.

(I do want to say that all the thoughts about the app are my own!)