Four 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 2022.
Comment from the Diagnosis Working Group Co-Chairs
We’re delighted that 2022 saw NHS England’s pre-diagnosis breathlessness pathway for adults in England become available to use by staff working in health and social care. Our hope is that this tool will help support patients with chronic breathlessness to obtain a more accurate and timely diagnosis. However, in 2023 and beyond, it is essential that there is meaningful promotion of the pathway to ensure its widespread adoption in practice. Patients also need to understand what they should expect when presenting with symptoms.
Worryingly, our members continue to tell us that diagnostic capability remains frustrated by the slow return to the universal use of spirometry despite guidance saying it is safe to use. In response to this, Taskforce co-hosted a webinar in December 2022, attended by more than 250 people, which gives a strong indication of the level of collective concern and passion for seeing spirometry uptake improve. Given this, we intend to undertake focused work to address the barriers in 2023.
We also remain deeply concerned by the significant drop-in newly diagnosed cases of chronic obstructive pulmonary disease, and the time it takes people to get diagnosed. In February 2022, Taskforce wrote to respiratory clinical networks highlighting this worrying trend and asking what their plans are for addressing it.
In better news, there has been encouraging progress with the roll-out of Community Diagnostic Centres (CDCs) across the country. We will continue to look on with interest to see what impact they will have on the diagnosis rates, speed of diagnosis for respiratory conditions and how effectively they meet patients’ needs.
Another significant development in 2022 is that the UK National Screening Committee (UK NSC) has given a positive recommendation for the introduction of the country’s first targeted national lung cancer screening programme for people at high risk. We agree with the Committee that a national programme has the potential to save thousands of lives and we hope this will quickly become operational. We are however disappointed that spirometry will not be mandated as part of this programme and view this as a missed opportunity.
In 2023, Taskforce will be continue to make the case for spirometry to be included in lung health checks, and we have been told that the National Institute for Health and Care Research (NIHR) is planning to develop further research into this issue. Findings will also be available from the Taskforce funded research by Imperial College London, into patients’ experiences of the time taken to receive a diagnosis and to start treatment, as well as separate research to better understand the actual prevalence of COPD.
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.
This year has seen the significant achievement of NHS England’s pre-diagnosis breathlessness pathway support tool for adults in England being made available for use. We are very pleased that Taskforce’s respiratory disease care pathway influenced the development of the tool and that we had regular opportunities to provide feedback during the drafting process. This has been the culmination of considerable work by the Taskforce and others over recent years to push for a clear patient pathway. The tool is currently only available with restricted access to health and social care staff on the FutureNHS platform; however, we will continue to press for more widespread availability, and crucially, promotion so that it quickly becomes established in practice. In addition, our member Asthma + Lung UK, are calling on devolved nations to follow suit and implement a pathway for their patients. We will also be looking to NHS England to ensure appropriate, clear and accessible patient communications so that people with symptoms such as breathlessness know what to expect and ask for.
The pathway currently includes a six-month timeframe for how long it should take patients to receive a diagnosis and support package. In contrast, the national cancer pathway sets a time-limit of 62 days. We are therefore calling for respiratory timescales to be brought in line with those for cancer and we have made our case at both a meeting with, and in a letter to, the then National Clinical Director for Respiratory, Andy Menzies-Gow. We intend to use the forthcoming findings from the Taskforce commissioned Imperial College London research into the delays in obtaining a diagnosis to continue to push for a reduction in the time limit. This is especially important for patients with life-limiting conditions for which there is currently no treatment, such as pulmonary fibrosis.
As of December 2022, there were 92 of 128 approved sites for Community Diagnostic Centres (CDCs) up and running. These ‘one-stop-shops for checks, scans and tests’ aim to achieve earlier diagnoses for patients, reduce waiting times and hospital visits. There are three operational models for the CDCs: ‘large’, ‘standard’ and ‘hub and spoke’ and the target is that by March 2023 there will be at least one in each of England’s 42 Integrated Care System areas (partnerships of organisations that have come together in a locality to plan and deliver joined up health and care services for people in their area).
The expectation is these CDCs will be a key means to help address the current patchy access to spirometry testing in primary care, which will undoubtedly be impacting on the diagnosis of respiratory disease. This is despite guidance indicating that spirometry is safe and is not an aerosol generating procedure. To help raise awareness of the issues and highlight solutions to enable a more widespread return to its use, Taskforce hosted a virtual webinar in December 2022. The event was attended by more than 250 people and included presentations from NHS England and The Association for Respiratory Technology & Physiology (ARTP). It was extremely interesting to hear from clinicians working in services about the challenges to restarting spirometry and we intend to work with partners to tackle these barriers in 2023.
Taskforce advocates for a CT-first approach to ensure rapid access to diagnostic scans from primary care referrals. We have continued to use our briefing paper to make the case as to why this should become NHS policy.
In 2023, we will publish two important research projects. The first, will help provide a much more accurate calculation of the prevalence of COPD. This is important because it has long been generally accepted that prevalence is below the actual number of people diagnosed with COPD. The second, will explore the time it takes patients to receive a diagnosis and treatment, including looking at the symptoms that patients present with.
Recommendation 2b: Develop a formal referral system to enable community pharmacists to refer people directly to general practice or other appropriate organisations.
The Taskforce Community Pharmacy sub-group has continued to raise awareness of the value of community pharmacists at all stages of a patient’s treatment journey, including at the outset when people might present with, or without symptoms, to a pharmacist. We want to see the introduction of a system to speed up and formalise pharmacists’ referrals into general practice and we set out our case by responding to the recent Royal Pharmaceutical Society consultation on the future of pharmacy in England. We will continue to set out the opportunities we feel exist for reimaging the role and value of community pharmacists to help deliver better patient care.
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.
In September 2022, we had the positive news that the UK National Screening Committee has recommended that the four UK nations should implement a targeted national cancer screening programme, integrated with smoking cessation services, for people at high risk.
This will involve the further development and expansion of NHS England’s Targeted Lung Health Check programme. This sees people in certain areas of England, aged 55-74 that have ever smoked, invited to a free lung check with use of low dose CT screening. It is now running in a further 20 locations and the expectation is that 1.5 million people, across 43 locations, will have been invited for a lung health check by 2024/25.
The expansion of this programme aims to find people with lung cancer early, when they may not have any symptoms, as this increases the chances of treatment being successful. The approval of this programme by the National Screening Committee is great news, but we are disappointed that spirometry will not be mandated as part of this programme and view this as a missed opportunity. We are also concerned that only lung cancer cases will be prioritised, and we want see all screening results appropriately followed up to ensure all patients receive the treatment and care they need. Further modelling work is being undertaken by the Committee to determine the scope of the implementation and refine their recommendations and in 2023 the Taskforce will continue to push for more use of spirometry and comprehensive result follow-ups.
Further evidence of the importance of improving diagnosis can be found in a new report by Asthma + Lung UK. More than 6500 people with COPD in the UK were surveyed between January and April 2022. It found that nearly 1 in 4 participants (22.5%) waited 5 years or more for a diagnosis and 1 in 8 waited more than 10 years. In the UK there are approximately 1.4 million people with a diagnosis of COPD.
Rachel Warren, Diagnosis policy lead at the Taskforce, explains more about how Community Diagnostic Centres could help tackle diagnosis issues.