One in four people with COPD waited more than five years for a diagnosis, research reveals

Asthma + Lung UK is calling for lung health to become an urgent priority after a damning report, released ahead of World COPD Day tomorrow, reveals that almost a quarter of people surveyed with the deadly lung disease chronic obstructive pulmonary disease (COPD), waited more than five years for a diagnosis, whilst one in eight waited more than a decade. 

Delays of this length can result in people with COPD, an incurable condition which causes severe breathlessness and affects around 1.4 million people in the UK, losing lung function. This leads to extreme breathlessness and difficulties performing everyday tasks like walking to the shops, housework, and socializing. Late diagnosis means people are living with a poorer quality of life and are much more likely to have life-threatening flare-ups of the disease.

Asthma + Lung UK, which has published its findings in its latest report, Delayed Diagnosis and Unequal Care: The reality for people with Chronic Obstructive Pulmonary Disease (COPD) in the UK in 2022, based on a survey of 6,500 people reveals that the average wait for COPD diagnosis is five years. 

COPD is an umbrella term for a group of lung conditions which cause breathing difficulties, including chronic bronchitis and emphysema, and symptoms of the disease include breathlessness, a chesty cough and chest infections.  

More than a third (34%) of people surveyed said they were unable to recognize the signs of COPD and around 1 in 4 (23%) said they were misdiagnosed as their doctor thought they had a chest infection or cough. Other key problems included access to care, with 1 in 4 (26%) saying they couldn’t get an appointment and 1 in 5 (21%) being unable to access diagnostic tests (including spirometry, a breathing test which is a key method of diagnosing COPD). 

Asthma + Lung UK, which funds research into lung conditions, has a helpline, and more than 150 support groups for people with lung conditions including COPD, wants to see the government roll out a UK-wide public awareness campaign on key symptoms, such as breathlessness, like Be Clear on Cancer.

It is also calling for the urgent prioritization of quality-assured spirometry across the healthcare system, particularly in primary care. Spirometry was halted during the pandemic due to infection concerns around COVID-19, even though guidance showed it was safe, and is still unavailable in many areas. 

Delayed Diagnosis & Unequal Care reveals that only 51% of those surveyed who had been diagnosed in the last two years recalled receiving a spirometry test as part of their diagnosis, with Government figures showing that many thousands of people missed out on being diagnosed with COPD during the pandemic.

Worryingly, even those with a COPD diagnosis were not getting adequate support, according to the research by Asthma + Lung UK with 82% of people surveyed saying they had not received the ‘five fundamentals’ of basic COPD care, recommended by the National Institute for Health and Care Excellence (NICE), reflecting a 7% decline in care since last year.  

Every patient with COPD should get a yearly flu and a regular pneumonia vaccine, have a personalized plan to help them manage their condition, be offered optimized treatment for any other medical conditions and support to stop smoking if they need it. Certain patients should also be able to get Pulmonary Rehab (an exercise and breathing regime that helps with COPD).

The report also highlights significant health inequalities surrounding COPD, with poorer people more likely to have flare-ups, where they struggle to breathe, than their wealthier counterparts. Someone from the poorest 10% of households is more than two and a half times more likely to have COPD than someone from the most affluent 10% of households. 

Vivienne Gaynor, 60, from Edinburgh, took six years to get a diagnosis of COPD. She said: 

“I developed asthma as an adult and was given inhalers. But when I was 45, my breathing changed, and I noticed that my inhalers were less effective, and I kept getting chest infections and was wheezy all the time. Over the next six years, I lost count of the number of times I went to see my GP with a chest infection or trouble breathing, but all I was told was: It’s just asthma or Keep using the inhalers. 

“It didn’t make sense that I was constantly breathless, and I struggled just to get up the stairs, and was always tired. Finally in 2013, I got a message from my GP, telling me to pick up my COPD inhaler. And that was it – there was no explanation and no support. I swapped surgeries straightaway, and since then, the treatment I have received has been pretty good, and I realise I’m lucky for that. 

“But it still makes me angry that I was so easily dismissed, and the impact of the delayed diagnosis meant that I had to give up the job I loved as a mental health advocate, and now have to use a mobility scooter to get around. Lung health isn’t taken seriously enough, and nobody seems to understand what COPD is, and that it’s a very chronic condition with no cure. If I had been suffering with cancer or a heart problem, I don’t think I’d have had to wait so long for a diagnosis and would probably have received much more empathy and support.” 

Sarah Woolnough, CEO of Asthma + Lung UK, said:  

“We are hearing shocking stories of people spending years, even a decade of their lives, sometimes struggling to breathe, unaware that they have a lung condition which could be managed with the right treatment and support. Diagnosis of COPD needs to be faster and more accurate and there needs to be greater awareness of the seriousness of lung conditions and the signs and symptoms to look out for."

To achieve this, we are calling on the government to ensure the NHS is equipped to restart diagnostic tests for lung conditions, like spirometry. We are excited by NHS plans to introduce a pre-diagnosis Breathlessness Pathway for adults in England, which if well implemented could make a real difference, but there also needs to be a UK-wide breathlessness awareness campaign so the public and healthcare professionals are more aware of lung conditions. Those diagnosed with COPD need better, more joined-up care, and access to vital treatments. Anyone experiencing breathlessness should go to our website for information and support, and if necessary, seek medical advice. No one should be left fighting for breath.” 

Sarah Woolnough, CEO, Asthma + Lung UK

Asthma + Lung UK is urging people to check whether they are receiving the right care by completing the COPD Patient Passport.