Getting a more accurate asthma diagnosis
Emma, a patient representative, has written about her experience of FeNO testing and why she is involved in the work with NHS England to help more people get the right tests at the right time.
People cannot be diagnosed with asthma by their symptoms alone. There are tests and tools available which can support doctors to identify whether someone has asthma and what type of asthma they have, but one of these – called a FeNO test – is not used enough.
A FeNO test measures how much nitric oxide is in your lungs. This is helpful because nitric oxide is produced in your lungs when your airways are inflamed because you’re allergic to something you’ve breathed in.
At Asthma UK we’re working with NHS England’s Accelerated Access Collaborative (AAC) to make sure that more patients get access to FeNO earlier in their diagnosis. The AAC was created to speed up the introduction of new ways of treating and diagnosing conditions within the NHS.
Emma is a patient representative on the AAC’s FeNO group, and she tells us more about why she found having a FeNO test so important for her diagnosis and why she wanted to get involved in the work.
My asthma wasn’t recognised by doctors
I had been in and out of my local hospital for 12 months. Doctors there didn’t understand my asthma and often said that getting dressed and watching TV would make me better. My asthma does not present in a textbook manner and wasn’t recognised by any of the chest doctors there.
I was introduced to the FeNO test when I was eventually referred to a difficult asthma specialist. At this point I had been taking steroids for 12 months, but they were having no positive effect on my asthma and what only felt like a negative effect on my body and mental health.
Using the FeNO test, they were able to diagnose that I had severe asthma. I was reassured that I most certainly did have asthma, and by knowing what type it was I could try different, more targeted treatments.
I wish I’d had the FeNO test earlier
If I had a FeNO test in my local hospital at the beginning of my asthma deterioration, then there would have been the potential to recognise what kind of asthma I had and get me on the correct pathway of medication much sooner. It could have prevented many hospital admissions that not only impacted me but my soldier husband and our two children.
I think it is important that FeNO is used more widely for helping to diagnose asthma. FeNO doesn’t detect all types of asthma, but for patients like me, it could find they’re on the wrong medication when there is no need to be. Also, a FeNO test is easy for patients like me to take. I find spirometry, and sometimes peak flows, can be really difficult for me to do but I do not have this problem with FeNO tests.
It’s helpful to have a FeNO measurement that shows how my asthma is doing
Once the FeNO test is used regularly it can help with monitoring my condition. It’s so helpful to see the numbers on the FeNO machine, as it gave me a concrete result that leads to the right care. This means that my asthma nurses, GPs, and consultants alike all know the type of asthma I have and can follow the same procedures.
As an asthmatic all you want is people to believe you, understand you, and listen to you. For me, the FeNO test provided an effective way of ensuring these things started to happen.
If I can help one other person by sharing my experiences, I’ll do it
I think that the AAC programme could have a huge positive impact on patients with asthma. People shouldn’t be diagnosed by symptoms alone, and FeNO has a part to play in assisting a quicker diagnosis.
I think it is important to have people with asthma like me as part of this programme as ultimately we are the ones that stand to gain the most from this programme. We are the ones who have lived with misdiagnosis, fear, uncertainty, and frustration. We can help those who don’t have asthma or haven’t seen anyone have an attack to understand how it can impact our daily lives and family.
I applied to be part of the AAC programme because if I can help just one patient not have to go through what I went through by sharing my experiences, then it’ll be worth it.
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