Three years on: identifying lung disease early

We made recommendations about improving the early and accurate diagnosis of lung disease. Here’s what’s happened in 2021

Comment from Diagnosis working group Co-Chairs

The COVID-19 pandemic has continued to have a significant impact on the early identification of lung disease. A paper prepared by the Department of Health and Social Care (DHSC) and Office for National Statistics (ONS) on health impacts of COVID-19 found that diagnoses of COPD fell by 51% between 2019 and 2020.  In addition, the capacity to diagnose patients with lung conditions using the necessary objectives tests remained low throughout 2021, with the ongoing delay in restarting spirometry in primary care having a severe impact.

This means the need has never been greater for a step change in the way respiratory patients get a timely and accurate diagnosis.  Fortunately, this year has seen two significant and exciting developments which we believe hold considerable potential to improve lives. The first is the imminent introduction of an NHS pathway for diagnosing breathlessness, and we are delighted that it aligns with the principles of the Taskforce’s own diagnosis pathway developed in 2020.

The second is the announcement that a network of community diagnostic centres will be established across the country. We await details of how frontline clinicians will be supported to adopt the pathway in a timely, consistent and effective way, as well as the specifics about where, when and how the centres will operate. Taskforce is particularly interested in how these changes will look and feel for patients, and how best practice is shared across the country. We intend to monitor this closely.

Looking ahead to 2022, we’re hoping there will be positive progress across a number of other areas of  Taskforce’s work on diagnosis, including our call to roll-out the use of CT-scans as a first-line test for diagnosing certain lung conditions, targeted case finding of people with COPD, expansion of the lung health checks programme and the delivery of a national screening programme.

Our Taskforce commissioned research into patients’ experiences of the time elapsed during their journey to receiving a diagnosis will also be published and we will use this to help shape our future influencing work.

Co-chairs of the Taskforce for Lung Health Diagnosis working group:

  • Carol Stonham, Senior Nurse Practitioner, Primary Care Respiratory Society
  • Dr Steve Holmes, General Practitioner, Royal College of General Practitioners

Recommendation 2a: Create a clear patient pathway with services for timely, accurate and complete diagnosis for all people with breathlessness and other respiratory symptoms.

We have taken a huge step forward in achieving our recommendation this year with the development of NHS England’s combined clinical pathway for diagnosing breathlessness in primary care.

The Taskforce had the opportunity to feed into the development process, drawing on our own respiratory disease care pathway published in 2020 and what patients have told us their needs and expectations are. We’re glad that the NHS England pathway broadly aligns with our principles and in particular, recognises the multiple factors that can contribute and interplay when someone presents with breathlessness. Importantly, the pathway will also include a timeframe for how long it should take patients to receive a diagnosis and support package. We will continue to call for these time-limited targets to be in line with the 62 day target in the national cancer pathway. 

We expect to be able to strengthen our case for the target time to be reduced by using evidence from forthcoming Taskforce research. We have commissioned Imperial College London to understand more about the experience of how long it currently takes for patients to receive their diagnosis of a lung condition, the time they spend self-managing their symptoms pre-diagnosis, and the time elapsed at various stages of their diagnosis journey. The findings will be available in 2023 and we have ambitions to replicate the research across other major respiratory conditions.

Another exciting development in support of patients receiving a timely, accurate and complete diagnosis is the planned rollout of a network of community diagnostic centres (CDCs) to complement existing local diagnostic services. These were first proposed in the NHS Long Term Plan and then further explained in Professor Sir Mike Richards review of NHS Diagnostic capacity. The ambition is that CDCs will be one-stop shops where people presenting with more complex symptoms can get a wide range of diagnostic tests that they need quickly and efficiently, reducing the need for repeat visits. For respiratory, this will include spirometry, FeNO, CT scans and other requirements according to patient need.

There are 40 early adopter sites due to be live and running by March 2022 and we are impressed by the speed with which these initial sites have been planned. The expectation is that a further 100 CDCs should be established within two to three years and government committed funding of £2.3bn to making this happen in this autumn’s Comprehensive Spending Review.  

While local diagnostic hubs, or ‘spokes’, are not mandated within this programme, we hope areas will use this funding to develop local testing hubs to sit alongside the bigger centres. We will be monitoring closely the plans for their development to understand how they will look and feel for patients and we will input our knowledge of what respiratory patients want and need to ensure they are fit for purpose. Looking ahead Taskforce is also committed to supporting the identification and sharing of best practice as the network is extended.

For some people where lung cancer or interstitial lung disease (ILD) is suspected, or their symptoms do not fit into criteria for common lung conditions, we want patients to be referred by their GP directly for a CT scan, without the need for a chest X-ray first, as this is the most accurate and sensitive test available. In June 2021, Taskforce published our CT-first paper, providing a clear and accessible introduction to why ensuring rapid access to CT scans from primary care could improve the accuracy and speed of diagnosis for thousands of people with lung disease. Our paper has been well-received by the respiratory community and in October 2021 we provided our position to the Healthcare Safety Investigation Branch’s national report: Missed detection of lung cancer on chest X-rays of patients being seen in primary care. In 2022, we will continue to advocate for this approach to be adopted as national policy.

Recommendation 2b: Develop a formal referral system to enable community pharmacists to refer people directly to general practice or other appropriate organisations.

To take forward this ambition we have established a new Taskforce Community Pharmacy sub-group that met for the first time in November 2021. This builds on the workshop we co-hosted with NHS England in 2020 and the results of our 2020 survey of more than 2,000 participants, that revealed how much community pharmacies currently support people living with lung conditions and of their untapped potential. 

Recommendation 2e: Implement a comprehensive national lung cancer screening programme, targeting those at high risk of developing lung cancer, and offering them low dose CT screening.

We applaud the effort of NHS England to get 23 established areas for the Targeted Lung Health Checks programme up and running again after the disruption caused by COVID-19. This initiative sees people aged over 55-75 years that have ever smoked invited to a free lung check, with those assessed as high risk of lung cancer offered a CT scan. We also welcome that additional areas will be added in 2022.

However, we have significant concerns over the lack of use of spirometry, which although part of the original Targeted Lung Health Check programme specification, was stopped during the pandemic. The checks are expected to continue to take place remotely until March 2022, and participants are consequently not having spirometry done as part of the check. This is a missed opportunity to diagnose and treat thousands of people with COPD at a time when diagnosis rates have fallen significantly.

It also limits the data that can be collected, and therefore our understanding, about how the checks could positively contribute to the earlier identification of COPD and other respiratory conditions. We know there is a concerted push from national policy makers and some local areas to restart diagnostic spirometry in primary care, as evidence confirms it is a non-aerosol generating procedure, so reintroduction into the Targeted Lung Health Check Programme can be done safely with appropriate guidance.

Taskforce continues to promote the need for a national lung cancer screening programme, and we are pleased that there is ongoing work towards this being established. We hope to see continued progress towards this next year.