A report published by Asthma + Lung UK (2022a) has found that new chronic obstructive pulmonary disease (COPD) diagnoses fell by 51% because of the pandemic, a quarter of people are waiting five years or more for a diagnosis, and delays have worsened since last year.
Delays in diagnosis can lead to loss of lung function, causing extreme breathlessness and difficulties performing everyday tasks. The report, based on a survey of 6500 people between January 2022 and April 2022, reveals that the average wait for COPD diagnosis is five years (Asthma + Lung UK, 2022a).
Spirometry and diagnosis
Up to 46 000 people missed out on a COPD diagnosis in 2021 (Department of Health and Social care, 2022), driven by lack of access to services such as spirometry.
Asthma + Lung UK is calling for the urgent prioritisation of quality-assured spirometry, particularly in primary care. Spirometry was halted during the pandemic due to infection concerns around COVID-19, even though guidance showed it was safe. It remains unavailable in many areas.
According to the National Institute of Health and Care Excellence (2021), spirometry testing is required to confirm diagnosis. However, only 50.6% of respondents diagnosed in the past 2 years recalled having this test done as part of their diagnosis (Asthma + Lung UK, 2022a).
The report states that the most impactful change that leaders working in respiratory healthcare can make is to facilitate the restart of quality assured spirometry, a key test for the accurate diagnosis of COPD. However, they recognise that this cannot happen without central support from the four UK governments. For example, funding is needed for refresher training to reskill the workforce (Asthma + Lung UK, 2022a).
The survey also looked at other key elements of the diagnosis process. The results found that some survey respondents did not receive (Asthma + Lung UK, 2022a):
- A chest x-ray (64.4% received)
- Blood tests (41.4% received)
- A discussion about work history (17.3% received).
Having these diagnostic tests gives a more complete picture of the complexity of COPD, and ensures the person with COPD gets the most appropriate treatment.
The survey also asked how long people waited to see a health professional about their symptoms, and it found 36.1% waited more than a year before seeking help. Asthma + Lung UK say this is crucial missed time, where new symptoms are going unassessed and unmanaged, and highlights the need to greatly improve public awareness of lung health and when to seek medical advice for key symptoms.
Misdiagnosis was reported by 46.2% of survey respondents. Patients were initially being diagnosed with chest infections or coughs by clinicians when new symptoms were mentioned. Other barriers to diagnosis were related to capacity issues. A quarter (25.6%) found it difficult to get an appointment, while one in five (20.9%) reported diagnostic tests not being available when needed (Asthma + Lung UK, 2022a).
Fundamentals of care
Even those with a COPD diagnosis were not getting adequate support according to the survey (Asthma + Lung UK, 2022a). It found 82% of respondents had not received the ‘five fundamentals’ of basic COPD care, recommended by the National Institute for Health and Care Excellence (NICE, 2022), reflecting a 7% decline in care since last year (Box 1).
Box 1.Five fundamentals of COPD care (NICE, 2022)
- Offer treatment and support to stop smoking
- Offer pneumococcal and influenza vaccinations
- Offer pulmonary rehabilitation if indicated
- Co-develop a personalised self-management plan
- Optimise treatment for comorbidities
Overall levels of five fundamentals care provision have dropped in every nation, most prominently in England (from 26% in 2021 to 18.4% in 2022). The survey also shows drops in several of the individual fundamentals, including smoking cessation services (down 1.1%), provision of key vaccines (down 0.7% for flu and 2.3% for pneumococcal vaccines), and pulmonary rehabilitation (PR) (down 4.2%), as well as the number of people who have co-developed their personalized self-management plan (down 2.4%) (Asthma + Lung UK, 2022a).
As well as variations across UK nations, there are also significant differences in England. Levels range from 25.2% receiving this care in Herefordshire, Worcestershire and Warwickshire, to only 11.4% in North Yorkshire (Asthma + Lung UK, 2022a).
Health inequalities and COPD
The report also highlights significant health inequalities surrounding COPD, with poorer people more likely to have flare-ups 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 (Asthma + Lung UK, 2022a).
Recent work from Asthma + Lung UK (2022b) demonstrates that the most common causes of COPD are a history of smoking and an adverse early life environment.
Conclusion
Asthma + Lung UK is calling for the government to roll out a UK-wide public awareness campaign on key symptoms, such as breathlessness, like the Be Clear on Cancer campaign. Diagnosis also needs to improve in the UK, with general practice nurses having a clear role to play. However, as Asthma + Lung UK point out, many of these clinical goals cannot happen without support from decision makers within the four governments across the UK.
On publication of the report, 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.’
Table 1. Provision of elements of COPD care, 2021-2022
| Element of care | % eligible people receiving this element of care | |
|---|---|---|
| 2021 | 2022 | |
| Offer treatment and support to stop smoking | 55.4% | 54.3% |
| Offer pneumococcal (pneumonia) and influenza vaccinations | 90.1% (flu); 68.7% (pneumococcal/pneumonia) | 89.4% (flu); 66.4% (pneumococcal/pneumonia) |
| Offer pulmonary rehabilitation if indicated | 50.3% | 46.1% |
| Co-develop a personalised self-management plan | 31.7% (have an action plan); 60.4% (co-developed it) | 32.1% (have an action plan); 58% (co-developed it) |
| Optimise treatment for comorbidities | 30.3% | 31.8% |
Case study
Katy Brown, 64, a retired nursery nurse from Bristol, was diagnosed with COPD in February 2021. ‘Everything about my COPD experience has been an absolute battle and it doesn't surprise me that people are having to wait so long to be diagnosed or to get the help they need. My breathing first became an issue in 2019 and I went backwards and forwards to the doctor with constant chest infections, but I was repeatedly fobbed off. Finally in February 2021, I managed to speak to a respiratory nurse over the phone who confirmed my diagnosis but because we were in the middle of the pandemic, I wasn't given a spirometry test to check on the state of my lungs. And that was it - no follow-up, and no guidance. I've had to find out everything for myself which has been exhausting. I honestly believe that if I wasn't such a forceful character, I'd still be waiting for a diagnosis and answers, as I was told nothing. Shortly after I was diagnosed, I joined one of Asthma + Lung UK's Breathe Easy groups which has been brilliant. It was there that I found out about pulmonary rehab, and I nagged and nagged my GP to get a referral, and I'm so glad I did, as for me, it has been an absolute game-changer.’