A Patient Journey with Asthma | Will McLean
Will McLean, a Patient and Public Involvement member of the Centre describes his experience of living with asthma
My asthma diagnosis
I was diagnosed with asthma at a very early age and experienced symptoms throughout my childhood, which went away when I was in my mid-teens.
In my early thirties I had an initially mild case of chickenpox, which developed complications. I had repeated bacterial chest infections and ongoing respiratory problems. I was told that my asthma had come back. This diagnosis was quick and easy, but finding a successful treatment was not, with many different options tried, while I was still experiencing recurring chest infections and breathing problems.
I also found I experienced quite bad side effects from the repeated antibiotics and oral steroids I was taking. Both caused stomach upset, which lasted for some time with the antibiotics, while oral steroids also caused sleep problems and anxiety.
Following a number of unsuccessful treatment tests for asthma a combination inhaler was prescribed which worked well for me. Alongside a reliever inhaler, my asthma was well-controlled for many years. I stopped having repeated infections and had little need for either antibiotics or oral steroids.
Differences in my asthma care
I have experienced care from different GP practices across different Health Boards/Primary Care Trusts, as I lived in different areas of England for some time. Each area had very different ways of managing and treating asthma. Some practices had asthma specialists – an asthma nurse or GP with an interest in the condition and some GPs offered regular asthma reviews and created an asthma action plan. Others did not offer any of these. However, with my asthma being mostly well-controlled I didn’t have a need for regular asthma check-ups and did not think about management or particularly pro-active management.
I did experience occasional flare-ups of my asthma during this time, but these happened gradually over a few days. These weren’t severe, lasted a short time and were usually managed by using my reliever inhaler. When they weren’t managed in this way I was again prescribed oral steroids to control my symptoms. I found that one short course of oral steroids would not clear everything up, and when taken over time I would still experience side effects. This was so infrequent though it did not pose too much of a problem.
Throughout this time, the only real asthma trigger I recognised was hay fever, occurring each year and easily managed with a combination of over the counter anti-histamines and my inhalers.
A change from my well-controlled asthma
After many years of well-controlled asthma, which did not affect my life too badly, something changed in 2019. I experienced a significant asthma attack that happened quickly, did not respond to my reliever inhaler and needed urgent medical attention. I did not know at that time what caused it. These types of asthma attack began to happen regularly, needing either hospital attention or an urgent appointment at my GP. This was new to me, and these asthma attacks were frightening for both my family and myself.
My asthma was now difficult to control. My inhalers, which had worked well for years, no longer improved my symptoms. Oral steroids did not seem to improve my symptoms either now, and I experienced such strong side effects to the point where they weren’t worth taking.
I also experienced triggers for asthma that had not affected me before. The list grew and grew, including dogs, cats and horses, perfume, aftershave and body spray, cleaning products, candles, smoking, pollution and others. I also could no longer control hay fever with over the counter treatments or my existing inhalers. It felt that I was reacting to everything, and it could be difficult to understand what was happening. Sometimes triggers would cause a slow increase in symptoms, others would cause an instant reaction and a bad asthma attack. I was also experiencing other non-respiratory symptoms with problems with my skin and eyes.
This was now having quite a significant impact on my life, with time off work necessary. I was also struggling with family life: I work fulltime, and have two young children.
An increase in treatments and the impact of COVID
From having one preventer inhaler and one reliever inhaler, I ended up with three preventer inhalers, a reliever inhaler, prescribed anti-histamines as well a tablet for allergic asthma. Even with this treatment increase, I was still experiencing asthma attacks and again was prescribed repeated courses of oral steroids, as well as a course of antibiotics for an unrelated infection. Along with the tablet for allergic asthma I was taking, I experienced some very difficult and significant side effects and the treatment didn’t work. My asthma continued to worsen, I was experiencing constant breathlessness, tightness in my chest and was unable to sleep. I had to stop the tablet for allergic asthma, and could not take oral steroids any more.
I was referred to the specialist respiratory team. This came at an unfortunate time – my initial appointment was at the end of February in 2020. Lockdown came within a few weeks and, because of the ongoing issues and treatment, I was placed on the shielding list. It turned out that shielding had a very positive impact on the problems with my asthma. Not being exposed to triggers/infections meant all symptoms went away quite quickly. I was having online appointments with the respiratory team, but on every measure – peak flow, symptoms, how I was feeling, my asthma was once again well-controlled. The respiratory team recommended removal of one of the new inhalers I was taking, a reduction in the level of inhaled steroids, took me off the shielding list and discharged me from their service.
I continued to be well, when predominately working from home and my asthma was once again under control. However, I ended up catching COVID, which caused complications with my asthma and this took time to resolve. Not long after this I started to see an increase in symptoms. I returned to full-time work in the office in 2022 and quite quickly I noticed my asthma being triggered by a number of different things. I have once again started the medication for allergic asthma and this has been positive, helping me manage the condition.
Becoming more proactive about my asthma management
It is now really important to me to understand my asthma and what triggers it. Being proactive, avoiding triggers and infections is important. I obviously don’t want a return to the previous problems I was having because the traditional treatments of oral steroids and antibiotics cause me significant issues - especially when taken with my current medication. I also want to be able to get involved in life, be able to work and spend time with my family and not have to hide away at home.
I am fortunate that my GP practice has a specialist asthma nurse and I get regular reviews and have an action plan in place. It can be hard to remember everything that happens with my asthma between reviews, especially when it is confusing and triggered by a number of things.
I use an app to manage and track my asthma. The app tracks peak flow, symptoms and inhaler use and includes my action plan. The app also integrates with other health data on my phone including steps/distance, activity calories as well as weather, pollution and pollen forecasts. I find having this data very useful and it can help me manage my asthma, understand what is triggering my asthma and how this can impact my life.
Will is part of the Centre’s Patient and Public Involvement group which helps our research continue to maintain people with asthma at its core.
Find out about the group and how you could get involved: