Two 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 2020.
Comment from the Diagnosis Working Group Co-Chairs
It is unquestionable that COVID-19 has caused a significant reduction in the numbers of people with respiratory symptoms receiving a timely diagnosis of a lung condition. It won’t become clear for some time how patients’ quality of life will be impacted from the delays in starting appropriate treatment.
The day-to-day experience of our Taskforce members suggest that diagnosis rates have been affected in a variety of ways. Patients are reluctant to visit their GP practices for fear of overburdening the system, as well as concerns about keeping safe, and as there is a crossover with some COVID-19 symptoms some people may be missed. The use of some tests, which are essential for accurately diagnosing symptoms, have been restricted to reduce the risk of virus-spread, and to date services have been slow to restart diagnostic tests under social-distancing and infection control guidelines. The viability of supporting people to use home-testing equipment is being reviewed, but its applicability is likely to be limited to very specific cases and types of patients, rather than being a widespread tool for one-off diagnosis.
In 2021, the Taskforce will continue to push for NHS services to use a clear patient pathway and provide timely access to the most appropriate diagnostic tests. We are excited by the potential significant expansion of diagnostic capacity and capability that will come with the development of the community diagnostic hubs and local diagnostic hubs for breathlessness. We intend to watch their progress closely and continue to advocate for these to deliver services that best meet the needs of patients.
Co-chairs of the Taskforce for Lung Health diagnosis working group:
- Dr Noel Baxter, GP, Primary Care Respiratory Society,
- Carol Stonham, Registered Nurse, Primary Care Respiratory Society,
- Dr Sam Hare, Consultant Chest Radiologist, Royal Free London NHS Foundation Trust and Royal College of Radiologists,
- Dr Graham Robinson, Consultant Radiologist, Royal United Hospitals Bath and British Society of Thoracic Imaging
- Read the Taskforce’s media story about diagnosis rates.
- Read Sarah Louise Jones’ story about the two years it took for her dad to receive his diagnosis of IPF.
Recommendation 2a: Create a clear patient pathway with services for timely, accurate and complete diagnosis for all people with breathlessness and other respiratory symptoms.
This year the Taskforce published our own respiratory disease care pathway setting out the step-by-step ways in which we believe patients should have their symptoms diagnosed. Our pathway was shared with policy makers and we hope it will inform the development of NHS England and NHS Improvement’s (NHS E & I) own version. NHS E & I’s early diagnosis working group is leading this work nationally and we look forward to continuing to work with them to support the implementation of a national pathway in 2021.
A central feature of the Taskforce’s patient pathway is for patients to be able to receive the appropriate diagnostic tests that they require in a single visit, at a single location. We are therefore extremely pleased with the government’s announcement to develop a network of community diagnostic hubs. These hubs are being heralded as key to increasing capacity for diagnostics, re-establishing services that have been interrupted by COVID-19 and managing COVID-19 related risks. The recently published Richards’ review has also reinforced the need for swift implementation of these hubs to ensure respiratory patients receive a timely diagnosis. We look forward to seeing the operational plans setting out how and where the hubs will operate, what diagnostic tests will be made available, and the range and competencies of the staff, to make sure patients’ needs will be met effectively.
To support our work on the patient pathway the Taskforce established a new sub-group focused on the use of CT scans in the early and accurate diagnosis of aggressive lung conditions, particularly lung cancer. We have drafted a position paper setting out the case for rapid access to CT scans through general practice for patients who would benefit. Given this, we welcome the Richards’ review recommendation to double CT scanning capacity over the next five years.
Tracking trends in early and accurate diagnosis rates remains challenging in the absence of a nationwide approach to gathering timely data from primary care services across England. The Taskforce is working with Imperial College London on a research study to understand the time that elapses at different points on a patient’s journey, from first presenting in primary care with their symptoms, to receiving a confirmed diagnosis.
We have also commissioned Imperial College London to assess the true recorded prevalence of COPD across primary and secondary care records. This is because current estimates are widely considered to be an under-reporting. The results will also provide a clearer picture of the differing demographic and geographic characteristics of people with COPD.
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.
This summer we published our briefing for policymakers outlining our position on the Targeted Lung Health Check programme, which was shared with each of the pilot sites and NHS E & I, along with the Royal College of Radiologists and British Society of Thoracic Imaging’s briefings.
A number of pilot sites were due to start running in 2020, but unfortunately this work has been largely paused. NHS E & I have highlighted the programme as a priority for restoration and they are supporting most sites to begin or restart operations in April 2021.
We are pleased that there continues to be progress towards the long term goal of establishing a national lung cancer screening programme.