A new survey of people with severe asthma reveals the devastating effect of the condition on their lives, with nearly half (45%) hospitalised from life-threatening asthma attacks more than 10 times since they were diagnosed.
People with severe asthma and parents of children with the condition also shared the impact on their quality of life, with 66% saying severe asthma has made them or their child anxious, and 55% reporting depression.
Of the 253 people who responded to the Asthma UK pilot survey, nearly all (96%) said the general public doesn't understand what it's like to live with the constant unpredictability of severe asthma. This lack of understanding, combined with daily challenging symptoms, means more than two-thirds reported being held back in work or school, with more than two-thirds also saying it affected their social life.
Asthma UK wants to change that, so is launching a wider survey to capture people's experiences of living with severe asthma, which can be accessed here.
Severe asthma explained
Of the 5.4 million people with asthma in UK, an estimated 3.6% to 5.0% - roughly 250,000 adults and children - have severe asthma.
Severe asthma is usually diagnosed when people fail to respond to conventional treatments for asthma, which is typically managed with a preventer inhaler containing a low dose of steroid medicine called corticosteroids.
People with severe asthma will often need to take stronger steroid medication in the form of steroid tablets or higher dose preventer inhalers. But even with this treatment, people with severe asthma still get symptoms on a daily basis, which can make it difficult to lead a normal life.
Furthermore, treatments for severe asthma need to be tailored to each individual, and it can take time to find the best combination of medicines to help people manage their symptoms as well as possible. In the survey, 38% said it took a few years to find the right combination of medicines for them.
Dr Samantha Walker, Director of Research and Policy at Asthma UK, says: "We know that some people may struggle for months or years before they're given the right diagnosis and right treatment for their severe asthma. We also know that some people with severe asthma don't respond well to any of the treatments currently available and urgently need new ones to help manage their symptoms. We want to hear from more people with severe asthma to better understand their needs and experiences."
Results from the Asthma UK pilot survey
Impact on quality of life
- 68% say severe asthma holds them back in work and school
- 71% say severe asthma affects their social life
- 54% say it holds them back from going on holiday
- 66% say severe asthma has made them (or their child) anxious
- 55% say having severe asthma has made them (or their child) depressed
- 55% say it's affected their confidence
- 50% say it affects family life
Number of A&E visits since diagnosis
- 75% say they've been to A&E more than three times (for themselves or their child) because of an asthma attack
- 45% say they've been to A&E more than 10 times (for themselves or their child) because of an asthma attack
Peter Naylor, 52, was diagnosed with asthma at the age of three, but it wasn't until 2010 that he got the diagnosis of severe asthma.
"It had been getting gradually worse for some time, and the asthma attack was triggered by fumes from some work being done on the roof of my office.
"I remember being in hospital and knowing that the medicines weren't working, getting more and more terrified, then looking up and seeing a sign saying 'resuscitation'."
Peter now works closely with his GP and asthma nurse to manage his condition.
"When I first came out of hospital, I worried about whether I'd be able to go back to work, and whether I'd have another asthma attack. It took a while to work with my GP to find the right combination of medicines with the minimum of side effects, but my current combination seems to be working. I have to use my reliever inhaler pretty regularly but I can still get to the gym around three times a week."
Meditation and counselling has helped Peter with the anger and anxiety he has experienced since the diagnosis.
"My advice to someone who has just been diagnosed with severe asthma is to learn as much as you can, and to understand that you can still lead an active life.
"I used to get angry and feel that it was unfair that I had this condition, so I'd also advise someone to seek some kind of counselling to learn how to manage your emotions and anxiety – or try something to calm your breathing and mood, whether that's yoga or meditation. It's not a cure, but it does help you see things in a different light.
"I practice meditation, and I've have had some cognitive behavioural therapy through the NHS Time to Talk programme, which I've found very useful for asthma – it's all about challenging negative thoughts. I have to accept that I have asthma and there's no cure – that's a fact. But what I can change is the way I feel and think about it, and what I do to manage it, like taking my medicines and keeping active."
Despite his positive outlook, Peter emphasises the need for a cure.
"On a bad day, even with all the medication I'm taking, I still struggle to breathe. So it's really important that the research continues to look at other ways of improving asthma, and we work towards that goal of a cure.
"The one thing that would make my life better right now would be improving other people's understanding and awareness of asthma, and severe asthma in particular. Compared to other chronic conditions, asthma isn't taken seriously, and it's more likely to be brushed under the carpet. People don't understand that asthma is a condition for life and just how bad it can be."
Notes to Editors
For more information, please contact the Asthma UK media team on, 020 7786 4949 (during office hours) or 07951 721393 (outside of office hours).
The Asthma UK Data Portal is a new online tool for journalists to access the latest figures and trends in asthma outcomes across the UK. Information on asthma facts and statistics can also be found on our website.
About Asthma UK
In the UK, 5.4 million people are currently receiving treatment for asthma: 1.1 million children (1 in 11) and 4.3 million adults (1 in 12).
Every day, the lives of three families are devastated by the death of a loved one to an asthma attack, and tragically two thirds of these deaths are preventable.
Asthma UK's mission is to stop asthma attacks and cure asthma. We do this by funding world leading research, campaigning for improved care and supporting people to reduce their risk of a potentially life threatening asthma attack.
The Asthma UK Helpline is open weekdays from 9am to 5pm on 0300 222 5800.