People's expectations of what asthma is shouldn't be narrow

Aaron, 49, has asthma and severe allergies. Here he describes some of the gaps he has seen in his asthma care, and what he wishes other people were taught about the condition.

I think I was about seven when I got diagnosed with asthma. Before then, I had been diagnosed with pleurisy, bronchitis and pneumonia…you name it, and I had probably been described as having it - anything but asthma.  It was actually a change of GP practice which led to my diagnosis. I saw a new doctor who diagnosed asthma within about ten seconds of listening to me wheezing. I've got numerous allergies, and some are life threatening, such as nuts, dogs and cats. They can all trigger severe reactions, anaphylactic and asthma. I've had repeated asthma attacks since I was a kid.

Nobody explained the benefits of good adherence to the preventer rather than the reliever to me or my parents.

A plethora of drugs exist nowadays. Obviously, they didn't when I was a kid. So, I basically had the blue and brown inhaler, but there was very little information about what they actually did and I therefore lacked the ability to understand what was going on with my lungs. I distinctly fell into the adolescent pattern of needing the instant hit of taking the reliever and didn't see the benefit of taking the preventer steroid inhaler. No one sat me or my parents down to explain the mechanism of the treatment. I understand why kids aren’t always good at adherence - kids don't care, they're indestructible and they don't see the bigger picture.

But as you get older, say your early thirties, you suddenly start thinking “well, actually, I can see why I need to do this now”. But nobody ever went through the benefits of good adherence to the preventer rather than the reliever with me or my family. I still think that's the same today. I still talk to people about the subject and the younger end still don't see the benefit. They take the reliever inhaler and they suddenly stop getting out of breath. They don't see the benefits of the steroid inhaler as a preventer. 

My asthma has always caused me problems. One thing that probably gets neglected in discussions about asthma is that when you’ve got asthma or hay fever, the main exam dates are not conducive to people having breathing problems. You're taking exams in high pollen season which obviously causes problems with your hay fever and asthma. This affected my education, which I suppose fundamentally changed what I was going to do in life. 

As far as I'm concerned, it's easy to fall back into bad habits

I think people need to understand the differences between preventer and reliever inhalers. I think that's fundamental. They need to understand why they need to take it, and make sure that they have follow ups from their health care provider (whether it's the asthma nurse or the GP), to make sure that what they're doing is right and that they're using the spacers or the aero chambers. They need to make sure they're using them correctly and continuing to use them correctly, because it's easy. As far as I'm concerned, it's easy to fall back into bad habits. And if we're talking about late onset asthmatics, they should be doing as much research as they can about the condition and getting to know about it themselves, their bodies, and the condition as much as possible. If you're willing to spend a bit of time and learn about your condition you can learn to live with it, and you’ll also know what signs to look out for.

I never rule anything out now. People's expectations of what asthma is shouldn't be narrow

Asthma can be triggered because of pollution, anxiety, or because of an allergy. It could be triggered by stress. There are so many triggers for asthma. For some people, I don't think it's just one thing that's triggering it. I never rule anything out. That's the biggest thing to take from my journey. Asthma is such an unpredictable condition.  So multifaceted in terms of what could trigger it. You could have a cold, that could trigger it. Equally you can walk into a room and somebody's been smoking and that can trigger it too. People seem to think it's just one thing and it isn't, it's so multi-dimensional in terms of what can cause it and I don't think many people actually understand that. And I'm not just talking about asthmatics, I'm talking about healthcare professionals as well. 

Patients should be seen as a whole rather than just as a pair of lungs

I think there needs to be a change in the way asthmatics, people with COPD and probably other people with lung disease are treated. They should be seen as a whole rather than just as a pair of lungs. I think that needs to change.

I have changed things over the last couple years because I’m a grandad now. My granddaughter's lovely, she's just turned two. It upsets me when I can't keep up with her boundless energy. When I was in hospital due to a series of severe asthma attacks, my daughter was six months pregnant.  I really wanted to be out and about when the baby was born. I want to be around for a long time. That’s why I've done a lot of my own research and I spend a lot of time researching asthma to try to improve my outcomes. But equally, I want to help other people's outcomes as well, which is why I got involved with Asthma UK and why I wanted to get involved with the Taskforce for Lung Health.

-------

If you would like to share your story with the Taskforce, please contact us at [email protected]

--------

The Taskforce for Lung Health recommends that there are improvements to inhaled therapy, through the development of a clear pathway for accurate prescribing and adherence, and the promotion of new technology such as smart inhalers. Ensuring that patients have their inhaler technique checked regularly is crucial for increasing awareness and understanding of correct inhaler technique


Add new comment

CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
4 May 2020