Severe asthma- family and friends misconceptions.

I was asked to write this blog post by Asthma UK as their report about severe and difficult asthma has just been published and the statistics are shocking. Asthma is not taken seriously or respected, some people don’t take their medication as they are meant to for a variety of reasons but this can be fatal. Those with asthma and those who know people with asthma need to understand just how serious it can be.

I consider myself very up to date with the latest asthma treatments, ensure I taken my medication as I am meant to and when I am meant to. I ensure I step up and step down my medication as my symptoms ebb and flow according to my personal asthma action plan. Even with my diligence to treatment and keeping myself well it is sometimes no where near enough and asthma wins over you, leaving devastating consequences such as death, the need for life support machine, very toxic drugs to relax the smooth muscle int he airways.

I have lived with asthma almost all my life. Over the years it has progressively become more difficult to control and severe which has impacted my own life and also my families lives as well.

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To manage my asthma I am in the very fortunate to have a team of specialists at the hospital who work hard to ensure I am on the best medication and most appropriate treatment aiming to control my severe asthma as best as possible. Despite this support and regular contact with the team my asthma remains severe to the extent I was put in a medically induced coma and was on a life support machine just under a month ago. I am sure if I did not have the team of specialists then there is a high chance my life would be very different if I was to have a life at all.

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Having severe asthma has resulted in many life changing circumstances from the sheer number of medications I require to control my severe asthma but then also medications to treat or prevent the side effects caused by the medication required to help my breathing. I currently take a total of 37 different medications, 14 of them are for asthma and 23 are for the side effects mainly caused by years of oral corticosteroids. I have also had to give up playing sport, change my career and now have had to give up my career, but the biggest impact has been on my family and close friends.

Living with severe asthma most of my life also means my friends and family have also lived with it too. They see how I try to manage my condition day to day, witness asthma attacks, call 999 for me when I don’t have the puff to call them myself, watch as helpless onlookers while an ambulance, with lights flashing and siren going, takes me to hospital as quickly as possible to stabilise the attack and make my breathing easier and then finally visiting me either in hospital or once I am discharged home. They see all this as well as my determination to manage my asthma desperately trying to ensure it does not take over and dictate my life. Despite witnessing all the above they accepted that this is what my asthma is like and that is that. An assumption was made that my asthma is as bad as it would get and my breathing wouldn’t get any worse than they have all witnessed. They thought this because I am under the care of a specialist asthma team who I can phone for advice whenever I am struggling which in my family and friend’s eyes means my asthma cannot get so bad that I may have a near fatal asthma attack.

My brother commented that he had become used to my asthma and almost complacent about how bad it could be. He said he has heard me speak recently of others who have died from asthma or friends who have been in a very serious condition but because I now have such a specialist team then I would be ok. It was everyday life me having severe asthma with the potential for requiring hospitalisation. He had taken this as normal and accepted it. So events earlier in the month were a huge shock and wake up call for the whole family because they had assumed I was safe with my asthma because I have some of the best people in the country looking after me and my asthma.

I look back now and see how my family normalised me being in hospital and me going to ICU so often which is really shocking. Going to hospital often should not occur let alone going to HDU or ICU that often. In any other health situation or if this was one of my siblings then it would not be just run of the mill and would be a life-altering event for the entire family.

My best friend who has known me my entire life and has been through thick and thin with me, seen me have asthma attacks and visited me in hospital never thought asthma could get as serious as it did during my last admission because I was under the care of specialists. She could not understand how asthma could get so bad when you are taking the latest medication that is available and have access to a team of specialists. She said she had never seen me look so unwell and vulnerable, not being able to do anything for myself reliant on others for everything.

The new report about severe and difficult asthma, which has launched by Asthma UK, makes me feel so fortunate to have such a good team and access to specialist asthma services to manage my asthma. Even with everything I have available my friends and family don’t fully understand how severe and life threatening asthma can be. I am sure if I did not have access to the specialists then asthma would have killed me. Everyone who may have severe asthma or difficult to control asthma needs to have access to specialists to help them live the lives they deserve to.

Botched asthma diagnosis…

Nothing like the sun newspaper to come up with a good headline:

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I may not be totally accurate in my view that for a long time asthma was a bit of a buzz word within the medical world. From reading and talking to different people it appeared that often people would go to their Dr because of a prolonged cough of some viral wheeze and come home with an inhaler and asthma diagnosis. I admit this is a huge assumption and there will have been more supporting evidence but it almost seems over recent years there has been an epidemic of asthma diagnosis

However last week NICE (National Institute for health and Care Excellence) published a draft report suggesting that over 1 million people in the UK had been wrongly diagnosed with asthma. That is 1/5 of the 5.4 million people who have asthma could actually not have asthma. I feel that if asthma statistics are not shocking enough lets just add some more stats and make it even worse.

The problem with asthma is that there are so many sub types, different phenotypes, different symptoms, triggers and so on and so forth. There is also no hard and fast rule of how to diagnose asthma. There are rough outlines for example recording a peak flow diary for a few weeks to see patterns and changes and depending on the result of this an asthma diagnosis can be made. However many people will present acutely with breathing difficulties which need to be treated first and not wait to do a peak flow diary. Due to the pressures on GP’s they do not have the time to spend with a patient making regular appointments to monitor them over a period of time before coming to the conclusion that the patient has asthma. You can read a small bit about this in one of my guest blogs by Laura (can be found in left side tab under Guest blogs) where she talks briefly about being diagnosed with asthma.

When I heard about the draft report from NICE part of me thought perhaps I could be one of those wrongly diagnose but that is very much wishful thinking. I think after 27 years of asthma, 11 years of brittle asthma, countless hospital and critical care admissions they would have worked out if I did not have asthma. But one can dream in the hope of one day not having asthma!!!

I can’t imagine the emotion and thoughts going through some peoples mind about wether they have asthma or not. I worry that many who are not particularly symptomatic and use inhalers regularly will stop using their inhalers because they may assume they don’t have asthma. This could potentially cause a huge problem and the aim of reducing hospital admissions due to asthma and deaths due to asthma may not decrease but might in fact increase as a result of many people hearing or reading shock headlines such as the Sun produced.

Asthma is such a difficult condition to have and to monitor because of the sheer numbers of people who have asthma.  My thoughts about why statistics surrounding asthma are so bad because it is a condition which does not cause a immediate deterioration if medication is not taken. To pick another condition such as diabetes, there is a very measurable way to see impact of medication. If a diabetic does not take insulin they will see very quickly their blood sugars increase and develop unwanted symptoms whereas with asthma if someone who is well controlled stops taking their inhaler there is no immediate effect which I believe could contribute to poor compliance as the effects of the inhaler would only be seen if the patient was subjected to a trigger.

When NICE put out the draft report about the possibility of so many people being wrongly diagnosed with asthma I was called by Asthma UK to do a radio interview about it. I was not able to participate in this unfortunately as it would be a chance to emphasise the importance of continuing medication even if you are not bothered by your asthma as the reason you are not bothered by it is because you are taking inhalers. I am glad in a way I was not able to participate in the interview because once I gave the report some thought it dawned on me that here in Scotland we do not use NICE guidelines for conditions and management but instead use SIGN who have not issued any reports about the possibility of inaccurate asthma diagnosis.

There does need to be a more robust and universal method of diagnosing asthma but I think this is a very difficult task to succeed on. Due to the nature of asthma as I said before there would need to be numerous different guides depending on the subtype, triggers or symptoms an individual suffered from.

in the meantime I can only hope that those who are in two minds about their asthma seek medical advice before stopping taking their treatment. It is a huge fear that this report will cause a lot of people to become unwell and possibly end up needing hospital treatment due to not taking their medication. It will be interesting to see in the future the impact that this has had.