Getting diagnosis of COPD back on track

Carol Stonham and Steve Holmes co-chair the Taskforce for Lung Health diagnosis working group. Post this year’s World COPD Day they’ve reflected on the problems in diagnosing COPD and what’s being done to make sure people are diagnosed more quickly and accurately.

An estimated 1.3 million people in the UK are currently living with diagnosed chronic obstructive pulmonary disease (COPD), and at least a similar number of people have the condition but are as of yet undiagnosed. Without treatment, those who remain undiagnosed will almost certainly see their health deteriorate.

Too many people share experiences of being diagnosed without the right tests, being misdiagnosed, or not being offered the support or information they need. One example of this is Eddie, who shared his diagnosis story with us. He found out by chance that he’d been diagnosed with COPD and bronchiectasis, over a year earlier. Yet no one had told him at the time.

People are often misdiagnosed or diagnosed too late

Asthma UK and the British Lung Foundation’s new report has found that sadly misdiagnosed isn’t uncommon:

Almost 15% of respondents with COPD said they were initially misdiagnosed with another condition.
There was a 51% drop in people being diagnosed with COPD in 2020 compared to the year before, due to the emergence of COVID-19. That’s 46,000 people with COPD who potentially missed out on a diagnosis because of the pandemic.

There are real opportunities to transform the diagnosis of COPD and other lung diseases. At the Taskforce for Lung Health, improving the diagnosis journey for patients is a priority for the diagnosis working group.

We’re calling for diagnosis to be made much more straightforward for patients from the very first time they experience symptoms, and to ensure that everyone gets access to the best support and treatments on diagnosis.

The challenges in diagnosing COPD

One of the challenges in diagnosing COPD is the overlap of symptoms with other conditions. People with COPD will often experience breathlessness; but so will people with various heart conditions, those experiencing anxiety, or indeed those with different lung conditions.

There are also immediate issues linked to the COVID-19 pandemic which are still affecting how people are diagnosed. During the early peaks of COVID-19, spirometry was paused in primary care for the safety of patients and clinicians. Although there is now national guidance advising how spirometry can be once again safely carried out in primary care, we know on the ground re-start has been patchy and uptake low, and that the number of patients waiting for spirometry is high.

From the beginning, we need to make sure that a good patient history is taken, the right tests are done by staff competent to perform them – such as spirometry – and that there is a route to escalate patients for more complex testing when the diagnosis isn’t clear. Nobody should be lost in the system without a confirmed diagnosis.

Improvements are being made

As the Taskforce for Lung Health we developed our own model pathway for diagnosing breathlessness to show how this could be done, so we were really glad when NHS England brought together a group of clinical experts to create a new, national diagnosis pathway tool.

The pathway, due to be published by the end of 2021, outlines what needs to be done when patients seek help for their breathlessness. It also shows for the first time how long it should take for patients to be diagnosed and supported with treatment.

It’s incredibly important that people with symptoms of lung disease, such as a cough and breathlessness, are properly diagnosed in a timely and accurate way. And this new pathway has the potential to improve it by outlining which tests needs to be considered at which point, dependent on the person’s history, symptoms and examination.

What needs to be done next?

An increased public awareness of respiratory symptoms is important to encourage people to seek help for their symptoms, if they haven’t already. These symptoms may have been thought to be COVID related, or people may have delayed seeing their GP because of fears of COVID infection.

We also know some people believe primary care is closed for routine work, however this is not true. Primary care remains the first point of contact for all patients, although consultations are occasionally different to before the pandemic, making use of more telephone or video consultations.

These are complex issues, but those with respiratory symptoms need to be reassured that accurate diagnosis and care remains the priority. With improving access to spirometry, ensuring everyone gets the right tests they need as soon as possible, and encouraging people who have symptoms to seek help, we can once again move forwards for people living with COPD.

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