Asthma + Lung UK is calling for lung health to be made an urgent priority after a damning report, released ahead of World COPD Day tomorrow, showed that almost a quarter of those surveyed with the deadly lung disease chronic obstructive pulmonary disease (COPD) were waiting longer than five years after diagnosis, while one in eight waited more than a decade.
Delays of this length can lead to people with COPD, an incurable condition that causes severe shortness of breath and affects around 1.4 million people in the UK, to lose lung function. This leads to severe shortness of breath and difficulty carrying out everyday tasks such as going to the shops, housework and socializing. A late diagnosis means that people have a poorer quality of life and are much more likely to have a life-threatening flare-up 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 waiting time for COPD is five years.
COPD is an umbrella term for a group of lung diseases that cause breathing difficulties, including chronic bronchitis and emphysema, and symptoms of the disease include shortness of breath, chest cough and chest infections.
More than a third (34%) of those surveyed said they were unable to recognize the symptoms of COPD and about 1 in 4 (23%) said they were misdiagnosed because their doctor thought they had a chest infection or a cough. Other key issues were access to care, with 1 in 4 (26%) saying they could not get an appointment and 1 in 5 (21%) not being able to access diagnostic tests (including spirometry, a breathing test which is a key diagnostic method on chronic obstructive pulmonary disease).
Asthma + Lung UK, which funds research into lung disease, has a helpline and more than 150 support groups for people with lung disease, including COPD, and wants the government to raise public awareness of key symptoms, such as shortness of breath, such as Be Clear on Cancer.
There is also a call for urgent prioritization of quality-assured angiography in the health system, especially in primary care. Spirometry was suspended during the pandemic due to infections surrounding COVID-19, even though guidelines showed it was safe and is still not available in many areas.
Delayed diagnosis and unequal care found that only 51% of respondents who had been diagnosed in the past two years recalled having a spirometry test as part of their diagnosis, but government figures show that many thousands of people missed a COPD diagnosis during the pandemic.
Worryingly, even those with a COPD diagnosis were not receiving adequate support, according to research by Asthma + Lung UK where 82% of respondents said they had not received the ‘five essentials’ of basic COPD care recommended by the National Institute for Health and Care Excellence (NICE), reflecting a 7% drop in care since last year.
Every COPD patient should receive an annual flu and regular pneumonia vaccine, have a personalized plan to help them manage their condition, be offered optimal treatment for any other conditions and support to stop smoking if they need it. Certain patients should also be able to receive pulmonary rehabilitation (an exercise and breathing program that helps with COPD).
The report also highlights the significant health inequalities surrounding COPD, with poorer people more likely to experience episodes of shortness of breath than their more affluent counterparts. Someone from the poorest 10% of households is more than two and a half times more likely to develop COPD than someone from the richest 10% of households.
Vivienne Gaynor, 60, from Edinburgh, took six years to be diagnosed with COPD. She said:
“I developed asthma as an adult and was given an inhaler. But when I was 45 my breathing changed and I noticed that my inhalers were working less and I was getting chest infections and wheezing all the time. Over the next six years, I lost count of the number of times I went to the GP with a chest infection or difficulty breathing, but all I was told was: It’s just asthma or Continue using the inhalers.
“It didn’t make sense that I was constantly out of breath and I just struggled to get up the stairs and was always tired. Finally in 2013 I got a text from my GP saying to collect my inhaler. And that was it – there was no explanation and no support. I immediately switched surgeries and since then the treatment I have received has been quite good and I consider myself lucky for that.
“But it still makes me angry that I was dismissed so easily and the impact of the delayed diagnosis meant I had to give up the job I loved as a mental health advocate and now have to use a scooter to get around.” Lung health is not taken seriously enough and no one seems to understand what COPD is and that it is a very chronic disease with no cure. If I had suffered from cancer or heart problems, I don’t think I would have had to wait so long for a diagnosis and probably would have received a lot more sympathy and support.”
Sarah Woolnough, CEO of Asthma + Lung UK, said:
“We are hearing heartbreaking stories of people spending years, even a decade of their lives, sometimes struggling to breathe, unaware that they have a lung condition that could be managed with the right treatment and support. Diagnosis of COPD needs to be faster and more accurate, and there needs to be more awareness of the seriousness of lung disease and the signs and symptoms to watch out for.”
To achieve this, we are calling on the government to ensure the NHS is ready to restart diagnostic tests for lung disease, such as spirometry. We are excited about the NHS’s plans to introduce an adult breathlessness pathway for diagnosis in England, which if implemented well could make a world of difference, but there also needs to be a campaign to raise awareness of breathlessness in the UK so that the public and health professionals are more aware of lung disease . Those diagnosed with COPD need better, more integrated care and access to important treatments. Anyone experiencing shortness of breath should visit our website for information and support and seek medical attention if necessary. No one should be left fighting for their breath.”
Sarah Woolnough, CEO, Asthma + Lung UK
Asthma + Lung UK is encouraging people to check they are getting the right care by completing COPD passport for patients.