Recently I had a small rant about asthma. Asthma is dangerous. Why do people not get that?
I think what got me most is that how are we ever going to change attitudes towards asthma if those with asthma are so cavalier about it.
I was at a Design Informatics Collider event with a variety of industry partners, researchers, clinicians, researchers and patients. The theme of the event was ‘Design Support for Asthma’ aimed at working out what can be done to help asthmatics or those who care for asthmatics. There was a group of us patients there from the patient and public involvement group at the Asthma UK Centre for Applied Research. I have met most of the patients before who were there and as always it was great to meet new people in the group too.
So what happened?
One of the patients there was chatting about their asthma and their asthma control but then announced proudly that they had not brought a reliever inhaler with them for the trip. This was shocking given that they had travelled up by train and stayed overnight. They had their preventer inhaler but stated that their asthma was so well controlled that they knew they would not need their reliever.
I was gobsmacked by this, and even quite angry about it. The person seemed proud about this fact which I found particularly annoying.
Asthma is such a dangerous condition. There has been so much in the press recently about how many people die from asthma, how underfunded asthma research is and just generally how bad the asthma situation is. The national review of asthma deaths (NRAD) which was published 2014 highlighted just how dangerous asthma is and how it is those patients with seemingly relatively mild asthma that are at the biggest risk from death. This year the news broke that rather than there being an improvement in the asthma death rate it has, in fact, got 20% worse.
I feel really passionately that even if you are confident in your asthma control you should never leave without a reliever inhaler especially if you are away overnight. For me, my inhaler is my security blanket. I always have a Ventolin (reliever) in my pocket, even when in a hospital and on oxygen and nebulisers I still have my Ventolin in my pocket too!
Asthma is such a fickle disease and you never know when a trigger is going to cause your airways to react and tighten up. The reason that was given for not having a reliever with them was that the weather was ok. They thought they would not be affected by any triggers despite saying in the next breath last time they were up they had to climb stairs and were in a really bad way after this. There was no guarantee that there would be no stairs this time around.
This episode upset me. These people should be being proactive about their condition and setting a good example and manage their condition to the best of their ability. To do this one of the key things is to have all your medications with you. It may end up that you don’t need it, that’s fine, but its better having it all with you and not require it than need your reliever and not have it.
Asthma and our airways don’t stop and think that they better not tighten up and become symptomatic because your don’t have your inhaler. They are going to do what they want when they want.
I am still reeling over it and so glad that there were no members of the children and young persons group there because they are so impressionable and may think that because someone older than them is not carrying their reliever with them then they don’t need to either.
I feel really passionately that if you are part of a group and forward facing attending groups where there are a mix of different professions who are putting a lot of time, dedication and effort into a career of helping those with asthma then you need to be acting in a responsible manner. You should not be bragging that you don’t carry a reliever inhaler.
As patients if we don’t do our part then clinicians will not take us seriously.