Confused about whether you have severe asthma or not? You’re not alone.

Imagine getting a surprise diagnosis of severe asthma – and then trying to work out what it means

Lottie Renwick

Senior Policy Officer

Joe Farrington-Douglas

Head of Policy & External Affairs

16 June 2020

Imagine being told by a letter or text that you may be more likely to die from COVID-19 because of a condition you didn’t even know you had. This was the reality for thousands of people who knew they had asthma but didn’t realise that they could have something called ‘severe asthma’. It was a shock for them – and must be an alarm bell for the NHS to make sure everyone with possible severe asthma is properly diagnosed, referred to a specialist centre and considered for new treatments.

“Severe asthma” is the most serious and life-threatening form of asthma. It can’t be controlled with normal preventer inhalers, often leading to multiple hospital admissions and toxic side-effects from regular courses of strong steroid tablets. Since March, thousands of people with severe asthma have been told by the NHS that they are so “extremely vulnerable” to complications from COVID-19 that they have to stay inside “shielding” until the end of June. But Asthma + Lung UK’s recent survey found that for almost 1 in 3 who received that shielding letter, it was the first time they had been told they had severe asthma[1]. To find out this way, possibly alone and without the support of your GP or asthma nurse, is completely unacceptable. This is also despite clinical guidelines that say that people with the condition should be treated differently, treated by specialist hospitals and considered for new life-changing treatments, called biologics.

Today, Asthma + Lung UK has relaunched our health advice pages to help everyone who might have severe asthma better understand their condition and how to live with it. We also publish a report, Falling into isolation: the lived experience of people with severe asthma. As the NHS re-opens after the peak of COVID-19, we will campaign to ensure that everyone gets the diagnosis and access to the care they need.

How do I know if I have severe asthma?

We estimate around 200,000 people in the UK have severe asthma, but far fewer have been diagnosed. Everyone who received a shielding letter has suspected severe asthma and if you have more than two courses of oral steroids in one year then you should be referred to a specialist severe asthma centre so they can assess you properly. Unfortunately, only one in five people who are eligible get referred. It is not until you have been referred to a specialist severe asthma centre that you can get a formal diagnosis of severe asthma.

What can severe asthma mean for your life?

Living with severe asthma is so much more than asthma attacks and occasional hospital admissions. It can have far reaching consequences on every aspect of people’s lives – lost years of education, long-term unemployment and falling away of social networks. People may feel isolated, lonely and scared, left without hope or the right support (you can find more support in our mental health and severe asthma pages).

“I was suffering, you can’t explain it in words. It was really, really hard for me. It was just so depressing that sometimes you think your life is just not worth living anymore.”

“But, obviously, I spent all the time in hospital. The first few times you get admitted, everybody comes to see you. But then, it gets a little bit boring and out of the way. So, friendships drift off and fall into a bit of isolation, really.”

What treatments are available?

The pandemic has highlighted once again that there is still a lack of awareness about severe asthma and people are suffering with the condition unnecessarily. We now have dedicated severe asthma clinicians, a wide range of services and biologic treatments that can truly transform the lives of people with severe asthma, if only they could reach them. We estimate 48,000 people are currently missing out on these new, life-changing biologic treatments.

“Well, I actually have a life now, because before [the biologic treatment] I was on a mobility scooter. I was unable to do anything. I wasn’t able to leave the house without the scooter. I just had no life. So, yes, it’s come back now”.

What will happen next?

Our new report shows that for there to be real change, the voices of people with severe asthma must be listened to. We hope COVID-19 has helped raise awareness of severe asthma and that it will be taken more seriously in the future. We are more determined than ever to make sure that people with suspected severe asthma get referred, and we keep pushing for more and better treatments. The good thing is the NHS now has a list of patients who should be referred, and we want them all to be seen by a specialist as soon as it is safe to do so.

Think you might have severe asthma? Check out our severe asthma webpages or speak to your GP.

[1] Asthma + Lung UK surveyed 3033 people in England (6th May-14th May) who had received a shielding letter/text. Of those, 30% (898/3033) said they had never been told they have severe asthma before.

 We’re here for you – but as a charity, we need you too.

Our team of health experts are here to provide the most up-to-date advice to people with asthma, but this is only possible thanks to the support of people like you.

If you find our advice useful and if you can, please show your appreciation today by making a one-off donation or by setting up a small monthly donation.

Your generosity will allow us as a charity to support people with asthma now and in the future.