24 June 2020
I was left on my own after diagnosis
Lauren has asthma. Her diagnosis journey left her confused about her condition. She tells her story and explains why things need to change.
I’m Lauren. I’m 30 and I was diagnosed with asthma while I was at university in my early 20s. My condition has got progressively worse as the years have gone on.
They gave me 2 inhalers and sent me away
While I was at university, I went to my university GP, they did some spirometry testing and told me that I had asthma. They gave me 2 inhalers and sent me away. And that was it. I had heard of asthma but I didn’t know much about what it feels like or how it affects you. I didn’t know what an asthma attack feels like.
In the first few years, my asthma wasn’t too bad. The inhalers I was on were controlling the asthma. It was manageable. As it got worse, I thought ‘maybe this is how it works, how this is meant to be’. I hadn’t met that many people with asthma so I didn’t know that it could be life-threatening or anything like that. I didn’t realise it had that degree of severity.
I had a few really big attacks that didn’t land me in hospital but were big enough to force me to take time off work. Ambulances were called. That’s when I realised how bad it was. That’s when I started to push to get more support.
I ended up in hospital
It was only when I ended up in hospital, exactly this day last year, after a severe asthma attack, that I got put through to see an asthma clinic and a consultant. You could see that year on year my attacks were getting worse, my use of steroids was increasing. Obviously, if I had got that treatment sooner from a specialist, I could have changed up my inhalers and found something that worked for me.
While many don’t get an accurate diagnosis early enough, it’s also easy to say ‘yeah, you’ve got that condition, here’s some medication and off you go’. But I think there’s more to diagnosis than just giving it a name. It’s about the pathways that come afterwards. If the GPs can see you getting worse and worse year on year, surely that should ring alarm bells. I don’t understand how it got from being fine to being severe and no one did anything.
I took control
I took a lot more control over my health. I’m not an expert and I wish I didn’t have to push so hard to get your own way.
But now I’ve got the knowledge there to manage my condition. I do my own research, looking into things. When I’m given new medication, I’ll do all the research before taking it. I find out all about it so I can see if it’s having the right effect or not. Over time, I’ve come to know myself and know what’s out there a lot more so I can talk to my consultant and discuss my options with him.
And at the minute, my condition has been okay, and although conditions aren't normal during COVID-19 (I’m not going out and about as much as I normally would), I'm hopeful about the future.
But the whole diagnosis picture needs revisiting. If people were diagnosed quickly, efficiently and given all the correct information at diagnosis, you wouldn’t get so many people, for example, taking their inhalers the wrong way. You'd have few confused people, and fewer people ending up in hospital.
At the BLF, along with our sister charity Asthma UK, we’re working hard to make sure people get diagnosed quickly, accurately, and that people like Lauren get the right treatment after diagnosis.
Today, alongside the Department of Health and Social Care, we’re funding a new platform to help researchers quickly evaluate diagnostic tests for COVID-19. Building the infrastructure to develop better tests quickly and efficiently is vital, not just for COVID-19 but for other lung conditions too.
Find out about the CONDOR platform on the Asthma UK website.