Thousands of people could be living undiagnosed with incurable lung conditions despite seeking medical help for coughs and chest infections, according to new analysis from Asthma + Lung UK.
The charity’s survey of 12,000 people with lung conditions in the UK found that over half of respondents were treated for their immediate chest symptoms, but didn’t have the underlying cause investigated at the time.1 Coughs and chest infections that keep on coming back can be early warning signs of a lung condition such as asthma and chronic obstructive pulmonary disease (COPD). The survey also found one in five of all respondents had to wait over a year for an accurate diagnosis of a chronic lung condition.2
Asthma + Lung UK says the root of the problem is simple tests for diagnosing lung conditions aren’t widely available to healthcare professionals, forcing them to take a ‘sticking plaster' approach of treating chest symptoms, but not the cause. Combined with pressures in primary care, this means the early tell tale signs of a lung condition are too often missed, leaving people with breathing difficulties without an accurate diagnosis, or receiving treatment for conditions they don’t have.
Currently, 1.7 million people are living with COPD in the UK, and around 600,000 are living undiagnosed.3 Previous analysis commissioned by Asthma + Lung UK shows that as many as 750,000 people in England are misdiagnosed with asthma, costing an estimated £132 million every year.4
Data also shows that after a referral to see a specialist, two in five people are not starting treatment within the recommended timeframe of 18 weeks, and over 6,000 are waiting more than a year.5
Early detection in primary care is crucial for treating and managing lung conditions such COPD, which includes emphysema, or protecting people from potentially life-threatening asthma attacks. It can also lead to a reduction in hospital admissions and improvement in quality of life and healthy life expectancy.
Asthma + Lung UK says many people seen in GP surgeries, A&E and urgent care centres with chest symptoms may have undiagnosed lung conditions, which are potential missed opportunities for starting a process of early diagnosis and preventing further ill health.
The UK has the worst death rates from lung conditions in Europe and Asthma + Lung UK says tackling diagnosis could help people stay well and save lives.6 The charity is now calling on the Government to provide long term funding for GP practices to deliver testing for lung conditions, including spirometry and FeNO (fractional exhaled nitric oxide). It also wants national diagnosis targets for lung conditions to ensure nobody waits more than six weeks for a diagnostic test, and for waiting lists to be halved by 2028.
Despite lung conditions being the UKs third biggest killer, unlike for cancer, there are currently no national targets to limit the amount of time someone should wait for diagnosis when presenting with symptoms of a lung condition, which is why Asthma + Lung UK is urging the government to establish targets.
Untreated, COPD gets progressively worse. It can also increase someone’s risk of getting multiple long term medical conditions. Breathlessness brought on by COPD can mean people stop being as active, so they become more prone to other medical problems such as high blood pressure, heart disease, obesity, and diabetes. In the case of asthma, which affects more than 7.2 million people, accurate and early diagnosis means symptoms can be managed and asthma attacks can be prevented with the correct treatment.7
Sarah Sleet, CEO at Asthma + Lung UK, said: “People who are struggling to breathe face agonising waits for an accurate diagnosis. They’re being misdiagnosed, or diagnosed too late, or are not put on the right treatment. As a result, the pressures on the NHS grow and grow with more emergency admissions and hospital stays. We need lung conditions to be treated as seriously as cancer and heart disease.
“A sticking plaster approach of treating symptoms, not the underlying cause, means too many people with lung conditions go undiagnosed for far too long. The new government’s commitment to rebalancing spending between primary care and secondary care is very welcome. We are calling for funding for GP practices to provide rapid testing for everyone experiencing signs of a lung condition. We also need national targets for diagnosis and specialist treatment to drive faster diagnosis and provide quicker access to the right course of treatment so people with lung conditions can slow down the progression of their illness and better manage their symptoms.”
Other data from the charity shows one in eight (12%) people with COPD surveyed waited more than ten years for a diagnosis.8 Furthermore, FeNO (fractional exhaled nitric oxide) which can be used to help diagnose asthma, is only available in half of GP practices.9 However, the NHS programme to roll out FeNO testing has now come to end, so levels are likely to decrease.
Diana Muirhead, 60, from Norfolk knows just how worrying it can be having to wait for a diagnosis. The mother-of-four has been on the waiting list for a spirometry test to confirm that she has COPD so she can begin treatment.
“My life is literally on hold until then, Diana said. I can't work at the moment because I feel so breathless and fatigued all the time but despite an X-ray showing that I probably do have COPD back in January, I can’t get treatment as it needs to be confirmed with a spirometry test.
“In the meantime, I struggle to carry out daily activities like cleaning and shopping and feel constantly exhausted because I can’t breathe properly. I am worried because the earlier COPD is treated, the better because treatment slows down its progression. I feel like I’m in limbo not knowing when I will get my diagnosis and it’s awful.
“The nurse referred me for an X-ray and put me on the waiting list for a spirometry test but told me I’d be waiting a ‘long time’ for it as the list was so long. I have no idea how long I will be waiting now.
“The Government really needs to set a time limit for diagnosis of lung conditions, like there is for cancer diagnosis, and make sure spirometry testing is available in GP practices so people can get tested straight away. Lung conditions are very serious and should be treated as such.”
Ends
References:
1. Figures from Asthma + Lung UK’s Life with a Lung Condition Survey 2024 in which 6582 out of 12700 (52%) people surveyed reported misdiagnosis including symptoms being dismissed as a cough or chest infection.
2. Figures from Asthma + Lung UK’s Life with a Lung Condition Survey 2024 in which 1890 out of 8718 (22%) people surveyed said they waited more than a year for diagnosis.
3. Stone et al. Prevalence of Chronic Obstructive Pulmonary Disease in England from 2000 to 2019. Int J Chron Obstruct Pulmon Dis. 2023. Accessed here.
4. PwC analysis commissioned by Asthma + Lung UK in 2023 shows that as many as 750,000 people in England are misdiagnosed with asthma, costing as estimated £132 million every year.
Figure 10: The number of false positive asthma diagnoses in the UK in 2023
| England | |
| # of optimal controlled patients misdiagnosed as false positive | 296,969 |
| # of suboptimal controlled patient misdiagnosed as false positive | 460,671 |
| Total | 757,640 |
| England | |
| Total cost of optimal controlled asthma patients misdiagnosed as false positive | £65,065,921 |
| Total cost of suboptimal controlled asthma patients misdiagnosed as false positive | £67,288,784 |
| Total | £132,354,705 |
5. NHS Waiting Times Data, https://www.england.nhs.uk/statistics/statistical-work-areas/rtt-waiting-times/rtt-data-2023-24/#Jan24 (spreadsheet labelled 'Incomplete Commissioner Jan24), NHS waiting time target is 18 weeks (https://www.gov.uk/government/publications/supplements-to-the-nhs-constitution-for-england/the-handbook-to-the-nhs-constitution-for-england). As of Jan 24, 6432 were waiting for respiratory medicine services and only 61.1% (3 in 5) had been seen within 18 weeks which means 38.9% (2 in 5) were waiting more than 18 weeks.
6. Reference: Eurostat. 2024. Causes of death – standardised death rate by region of residence 2011–2018. (Accessed June 2024).
7. Health Survey for England 2018, Health Survey Northern Ireland, Scottish Health Survey 2021, Welsh Health Survey 2015
8. Figure from Asthma + Lung UK’s 2022 report on COPD: Delayed diagnosis and unequal care, p1: https://www.asthmaandlung.org.uk/sites/default/files/2023-03/delayed-diagnosis-unequal-care-executive-summary.pdf
9. FeNO (fractional exhaled nitric oxide) is a test that measures the levels of nitric oxide in your breath. A high level of nitric oxide when you breathe out can be a sign that you have inflamed airways, and could be a sign that you have asthma. A FeNO test is suitable for adults and most children over five. From Asthma + Lung UKs Saving Your Breath report 2023, p23: https://www.asthmaandlung.org.uk/saving-your-breath-report here (June 2024).