COPD: Many do not understand their condition

The Taskforce for Lung Health is calling for people with suspected or diagnosed chronic obstructive pulmonary disease (COPD) to receive more support during and after the pandemic.

New analysis released by the Taskforce for Lung Health highlights the ongoing lack of awareness and knowledge surrounding lung disease in the country, and illustrates the need for a focus on early and accurate diagnosis and care for everyone with suspected COPD. Currently, 1.2 million people are living with diagnosed COPD in the UK, but according to an online review of 40,000 different patients over six years by the British Lung Foundation – a member of the Taskforce for Lung Health – over half (59%), of people living with diagnosed COPD could not confidently state that they understood their condition. More than one million people are estimated to be living with COPD without a diagnosis, making the scale of people with COPD who do not understand their condition much higher than 700,000, according to the Taskforce for Lung Health.

Crucially, recent research shows that COPD was the fourth highest comorbidity in COVID-19 related hospital admissions worldwide. Notably, the majority of the data was from UK hospital admissions. The Taskforce argues that there needs to be a concentrated effort to diagnose anyone with longstanding symptoms as soon as possible (through the immediate introduction of diagnostic hubs), and ensure that everyone with COPD is given advice and support from their GP on to how to manage their condition. Many people with COPD will now not only be at risk of getting unwell from exacerbations to their symptoms, but may now also be unaware of their risk of catching a severe case of coronavirus.

According to the NHS, patients in England seeking a diagnosis will not be able to access diagnostic hubs until at least 2021. Diagnostic hubs are a part of the NHS Long Term Plan, and their implementation has been accelerated because of the difficulties in diagnosing respiratory patients within primary care during COVID-19. However, the Taskforce is calling for the immediate introduction of diagnostic hubs for respiratory patients across the country to ensure that people with lung conditions receive support and care in COVID-secure settings as soon as possible. Anyone concerned about their lung health in the meantime is advised to seek care from their GP as soon as possible.

Chronic obstructive pulmonary disease (COPD) is the second most common lung disease in the UK, after asthma. During the height of the COVID-19 pandemic in England, at least 527,941 people with severe COPD were advised to shield in order to reduce the risk of catching COVID-19, which is more likely to be severe in patients with COPD. The Taskforce for Lung Health is warning that in the wake of the pandemic, many people with COPD who are at risk of more severe effects of COVID-19 may not have had the necessary information in order to manage their existing condition and keep themselves well, increasing their risk of being admitted to hospital. This is compounded by the large numbers of people with COPD who are still waiting for a diagnosis.

The World Health Organization projects that deaths attributable to COPD will increase by up to 30% over the next decade, becoming the third largest cause of death across the globe.8 In the UK, an estimated 30,000 people die from COPD each year, making it the second biggest cause of death from lung disease after lung cancer.9 COPD is a progressive condition but there are interventions which will slow the progression of the disease and help control symptoms, if given early. It is therefore vital that patients receive an accurate and timely diagnosis and immediate support to understand and manage their condition.

Eddie Hulme, 60, a retired chief technologist from Longdon-on-Tern, was unaware he had been diagnosed with COPD until nearly two years after his initial diagnosis.

Initially, Eddie had gone to hospital due to having heart problems but was referred to a respiratory consultant who told him he had severe sleep apnoea. Nearly two years later, Eddie was paying for private care to get arm surgery when his GP told him he should let his surgeon and anaesthetist know that he had COPD. This was news to Eddie. It was the first time that he had been directly informed about his diagnosis, in November 2016, despite his medical records showing that he had been diagnosed in March 2015, after undergoing a spirometry test.

Eddie said, “It was a shock to find out that the hospital had diagnosed me with COPD but didn’t tell me. I remember the consultant describing my lungs as a tree and telling me that the leaves on my particular tree had fallen off. I didn’t realise that this meant I had a serious lung condition, other than the sleep apnoea I was told about and given treatment for.

“I wasn’t told how to manage my COPD, I wasn’t given any medication or referred for treatment until speaking to my GP more than a year later about my upcoming surgery. It’s so important that people are diagnosed as early as possible and informed about what this means, and what steps they can take next to manage their condition as getting the right treatment and medication can be life changing.”

Historically, a third of first-time hospital admissions for patients with COPD are from those previously undiagnosed with the condition, as many people are failed to be diagnosed before becoming seriously unwell.10 The Taskforce for Lung Health has been campaigning for early and accurate diagnosis for patients with lung disease since 2018, by calling for the development of a clear patient pathway for all patients who are seen in general practice with respiratory symptoms.

A survey by Yougov earlier this year, commissioned by the British Lung Foundation, showed that 80% of people living with lung disease do not believe their condition is well understood by the general public. A lack of public understanding about lung health means that even after diagnosis, patients often feel left in the dark about what their diagnosis means. The lack of awareness surrounding lung disease is compounded by the fact that people worried about having a lung condition find themselves stuck in the system without an appropriate diagnosis, and are often not escalated for further testing as quickly as they should be.

During the COVID-19 pandemic, the use of objective tests for diagnosing lung disease has been limited, due to risks associated with the spread of coronavirus. Diagnosing conditions like COPD and asthma without appropriate tests can lead to incorrect diagnosis, particularly when people are living with more than one lung condition. The immediate establishment of diagnostic hubs would ensure that people are diagnosed safely and quickly, without being put at increased risk of contracting COVID-19.

Alison Cook, chair of the Taskforce for Lung Health and director of external affairs at Asthma UK and the British Lung Foundation, said, “Despite the fact that we have all become much more aware of the importance of having healthy lungs during the pandemic, people with lung conditions continue to be left behind in terms of getting early and accurate diagnosis, treatment and care.

“It is troubling to see that awareness of lung conditions is so low that even patients who have been diagnosed struggle to feel confident about what this means for them. Anyone who has become aware of persistent symptoms which may indicate lung disease should be able to access a diagnostic hub as soon as possible – patients and their families cannot afford to wait. In the meantime, if you are worried about your lungs, please do not hesitate to seek advice and support from your GP”.