When I was 14, I experienced my first asthma attack at a friend’s house. That was the first time I knew I was allergic to dogs. My GP, instead of conducting respiratory tests or offering me an inhaler, simply handed me an epi-pen and sent me on my way.
Now, as a qualified medical doctor myself, I can only guess that this misdiagnosis was due to a basic lack of diagnostic tools, time and appreciation of the diversity of symptoms that asthma presents with, a deficiency that continues to affect the healthcare system today.
Life on hold and a long road to diagnosis
I revisited my GP eight years later, after seriously struggling with asthma symptoms after mild exercise. I also have eczema and hayfever, the holy trinity of allergy, both strongly associated with asthma risk.
But once again, I wasn’t given the tests I so desperately needed. Instead, I was advised to keep a ‘peak flow diary’, was handed a blue inhaler as a trial and told ‘you probably don’t have asthma, you probably just get a bit wheezy when you exercise’.
It wasn’t until the age of 25, after several more severe asthma attacks which resulted in multiple trips to A&E, I finally got my hands on a proper diagnosis. By this point, it felt like nobody cared and I was the problem, and that there was no hope for working out what was wrong with me.
The decade-long wait was not without consequence. Aside from the numerous what I now know to be preventable attacks, I’m now reliant on multiple inhalers daily to maintain my lung function.
The problems with archaic diagnostic tools
My tardy diagnosis begs the question: why is it so difficult to diagnose a condition that affects so many? The answer, it seems, lies in shockingly poor access, and inefficiency and ineffectiveness of the diagnostic tools available.
Spirometry, a test that’s been around for 180 years, (yes, you did hear that right – for context the same time frame Queen Victoria married Prince Albert), is as uncomfortable as it is unreliable. It requires the patient to blow out as hard, and as long as they can, which is a taxing feat if you’re already struggling for breath.
Similarly, peak flow tests are not without their issues. The test involves blowing into a cardboard tube, moving a slider based on the force of your exhalation. Again, the results are often ambiguous and open to interpretation, making misdiagnoses worryingly common. The test is also very easy to fool. Some people (myself included) have learnt to blow the slider to the end of the tube by creating an air pressure pocket within their mouth!
The accuracy and reliability of a test should not depend on how well a patient can perform it. Would we consider it acceptable for the result of a blood test to be dependent on how well the blood sample was taken?
Where does this leave us?
While it’s crucial that patients continue to trust healthcare services, it’s equally vital that the system learns from past mistakes. As someone who had to endure years of breathing difficulties before receiving a diagnosis, I cannot stress enough how important it is for the NHS to prioritise early detection and ready access to reliable respiratory diagnostic tests in GP practices.
It’s almost every year that a news story of a young person dying of asthma hits the news. In fact, a national review of asthma deaths in the UK demonstrated that two-thirds of such tragedies were preventable.
At present, the UK has the unenviable status of having the second-highest asthma death rate in Europe, surpassed only by Turkey, which has a per capita healthcare spend of less than 1/30th of the UK. It begs the question of why the UK is so terrible at managing respiratory conditions compared to the rest of Western Europe.
These statistics are not just numbers; they are lives that could have been saved with better diagnosis and treatment.
What does the future hold?
The current pathway for diagnosing respiratory conditions in the UK is, frankly speaking, broken.
Initiatives such as those by NHS England, the Taskforce for Lung Health, and Asthma and Lung UK are welcome moves, but more must be done. We need to equip primary care doctors, like GPs, with reliable, accurate and easy-to-use diagnostic tools that remove subjectivity from the equation.
Furthermore, given that conditions like asthma require ongoing management, it’s crucial to empower patients to monitor their symptoms at home and learn how to self manage.
The vast majority of asthma patients I encounter are still using their inhalers incorrectly, don’t know how to recognise symptoms of poor control, and are uncertain on when to seek help. Proper education and patient management tools could prevent unnecessary hospitalisations and allow for timely medical intervention when needed.
It took me a decade to receive the asthma diagnosis that has changed, and perhaps saved, my life. While I can’t go back and reclaim those years, I can dedicate myself to ensuring others don’t have to go through the same ordeal.
My journey was arduous, but it has cemented my commitment to change the system for the better. As I look to the future of respiratory care, I remain hopeful that we can pave a better path for those who will inevitably follow in my wheezy footsteps.
Written by Dr Ameera Patel, Chief Executive Officer and Director, TidalSense.
