Co-chairs of Diagnosis Working Group foreword

Five years ago, the Taskforce for Lung Health made recommendations to improve early detection by creating clear pathways with services for timely, accurate and complete diagnosis for all people with breathlessness and other respiratory symptoms. Timely and accurate diagnosis is key because without this, people with respiratory conditions cannot access the right care and treatment that they need to improve symptoms and prevent acute or long-term deterioration. A delayed diagnosis may limit a person’s quality and even length of life. Since then, there have been significant moves to improve access to diagnostic tests and reduce health inequalities by bringing diagnostic tests closer to people’s homes and targeting those most at risk. This progress has enabled those living with lung conditions earlier access to treatment allowing them to live well for longer.

The past year has seen key research published by Imperial College London, funded by Taskforce, providing an updated and accurate estimate of the prevalence of Chronic Obstructive Pulmonary Disease in England from 2000 to 2019, based on a standardised definition of the condition. This research is a vitally important step to accurately quantifying those undiagnosed; we also recognise the limitations of this study and that patients require more support to ensure they don’t present until later in the disease pathway.  We also look forward to publishing further work by these researchers on the patient pathway, exploring the evidence on the events and timeframes involved in being diagnosed and treated for a variety of chronic respiratory diseases, including looking at the symptoms that patients present with.

In response to the slow return to the universal use of spirometry post-covid, Taskforce co-hosted a webinar in December 2022, which gave a strong indication of the level of collective concern and passion for seeing spirometry uptake improve. Since then, we have co-hosted two more webinars on ‘the importance of quality spirometry services and FeNO testing in diagnosing and monitoring respiratory conditions’ with Education for Health. The continuation of these educational resources has enabled us to reach hundreds of clinicians and provide expert advice on how to practically improve these services.

In our fourth year we saw NHS England’s pre-diagnosis cardio-respiratory breathlessness pathway for adults in England published in line with Taskforce’s proposals, and the past year we have been working hard to promote the use of this by clinicians across primary and secondary care, supporting patients with chronic undiagnosed breathlessness to obtain a more accurate and timely diagnosis. We have been hugely encouraged by the roll out of more availability of community testing across England with Community Diagnostic Centres (CDCs) now numbering over 110, but there are some concerns about capacity and variability across England.  The drive to expand capacity and enable more people to receive their vital diagnosis in a timely manner is a promising step, and we 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. CDCs are at present very varied in different parts of England, and some are part of the expanding number of breathlessness pathway pilots, of which there are now 15 enrolled. Taskforce will continue to track the progress of these and encourage the pilot site evaluation for wider pathway implementation.

2023 has seen the further roll out of Targeted Lung Health Checks (TLHCs) specifically targeted at those most at risk of developing lung cancer: people aged between 55 and 74 who either smoke or used to smoke. This is a huge step forwards in screening for lung cancer in an estimated 1.5 million people, across 43 locations, by 2024/25; diagnosing at an early stage means treatment is more likely to be successful. Taskforce’s work on this began in 2019 and has remain committed to championing the inclusion of spirometry for those with respiratory symptoms in this screening exercise, as well as ensuring there is a pathway established for the diagnosis, referral, and treatment of those with incidental findings from TLHCs, both of which were requested in a letter sent by Taskforce to the Secretary of State in October 2023.

Further political influencing was achieved by working group co-chair, Carol Stonham, who expertly presented diagnosis issues to parliamentarians in celebration of World COPD Day in November 2023, garnering political support for respiratory conditions, and emphasising the need for accurate and timely diagnosis.

Taskforce remains aware of key challenges to timely, accurate and complete diagnosis for all people with breathlessness and other respiratory symptoms. The provision of spirometry across England remains patchy, CDCs are not yet developed nor being utilised to their full potential, and there is a distinct lack of resources that enable quality diagnostic tests to be provided to everyone that needs them, close to their home. Many CDCs will not have capacity for initial spirometry testing reinforcing the importance of more local provision. As Taskforce moves into its next iteration, we remain committed to improving respiratory patients access to timely and accurate diagnostic tests; make the case for equal access to vital tests across the country, and championing sufficient resources for effective provision

Direct access to CT scanning by primary care is available to roughly 1/3 of England, but the majority do not have direct access. These geographical disparities to direct access mean patients must be referred to a specialist who will then request the CT, delaying the time to test from 2-3 months to 18 months. This pathway is delaying timely diagnosis, and with screening programmes providing CT scanning in a more timely manner, is exposing an inequality towards symptomatic patients. In 2021, the diagnosis working group produced a policy briefing calling for CT-first pathways for diagnosing lung disease, and made recommendations for improving rapid access to CT scanning in primary care. We were glad to see the announcement in August 2023 by NHSE for a GP direct access scheme for GP practices to directly order diagnostic checks for conditions including asthma and COPD but remain disappointed in lack of progress towards a CT-first pathway since our paper, reinforcing the importance of continuing to push for patients to be diagnosed earlier.

The Co-Chairs of the Diagnosis Working Group are:

• Steve Holmes, General Practice Principal, Clinical Respiratory Lead for NHS England (South West) and Committee Member for the Primary Care Respiratory Society
• Carol Stonham, General Practitioner, Co-Clinical Lead of the NHS England Respiratory Network and Direct of UK Lung Cancer Coalition

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

In April 2023, NHSE publicly published the ‘Adult breathlessness pathway (pre-diagnosis): diagnostic pathway support tool’. Taskforce was delighted by the publication of this tool which has been designed to align clinical practice across boundaries, with guideline recommendations to provide high-quality care, optimise patient outcomes and reduce unwarranted variation for patients across England. This was a significant achievement, and we were 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 its members over recent years to push for a clear patient pathway. Since the tool’s wider publication in 2023, taskforce has promoted it’s use, and member Asthma + Lung UK, called on devolved nations to follow suit and implement a pathway for their patients. 

As of December 2023, there were over 110 of 128 approved sites for Community Diagnostic Centres (CDCs) up and running. These investigation centres provide checks, scans and tests, results are then provided back to clinicians to make a diagnosis; they aim to support an earlier diagnosis for patients, thereby reducing waiting times and hospital visits. There are three operational models for the CDCs: ‘large’, ‘standard’ and ‘hub and spoke’ and the target of at least one in each of England’s 42 Integrated Care System has been achieved, with now at least one approved standard CDC in each (although not all operationally live yet).

Whilst CDCs are not designed, nor do they have the capacity, to replace the provision of spirometry and FeNO in primary care, they are important to help address the current patchy access to a variety of tests including spirometry, CT scanning and FENO across the system, something that is undoubtedly impacting 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 has co-hosted three webinars on ‘the importance of quality spirometry services and FeNO testing in diagnosing and monitoring respiratory conditions’ with Education for Health. The continuation of these educational resources has enabled us to reach hundreds of clinicians and provide expert advice on how to practically improve these services.

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. 

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 reimagining the role and value of community pharmacists to help deliver better patient care whilst recognising the importance for changing roles to be carefully evaluated ensuring those taking on new roles are appropriately trained to do so.

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. 

Targeted Lung Health Checks, a national lung cancer screening programme, are being rolled out across England. It involves inviting those aged between 55 and 74 who either smoke or used to smoke, to a free lung check with use of low dose CT screening. An expected 1.5 million people, across 43 locations, will have been invited for a lung health check by 2024/25, and whilst currently only available in some parts of England, they will be available everywhere by 2029. This is something the Taskforce will continue to track and encourage.

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 to see those identified with potential cardiovascular disease, COPD, bronchiectasis or ILD being appropriately managed within this programme.  All screening results should be appropriately followed up to ensure all patients receive the treatment and care they need. Taskforce’s work on this began in 2019 and has remain committed to championing the inclusion of spirometry in this screening exercise, as well as ensuring there is a pathway established for the diagnosis, referral, and treatment of those with incidental findings from TLHCs, both of which were requested in a letter sent by Taskforce to the Secretary of State in 2023.

Recommendations not achieved at the present time:

Recommendation 2c: Develop a single consistent guideline for diagnosis and management of asthma, including referral to tertiary services as appropriate for difficult or suspected severe asthma and ensure appropriate resources for implementation.

We are pleased that since formation of the Taskforce and pressure that the National Institute for Clinical Excellence (NICE) British Thoracic Society (BTS) and the Scottish Intercollegiate Guideline Network (SIGN) are meeting regularly and, although timelines are delayed by almost a year, aim to produce a combined guideline across boundaries which they suggest will be available in draft by June 2024 and completed by October 2024. We look forward to the combined guideline being produced and appropriate funding being prioritised support implementation.

Recommendation 2d: Introduce targeted case-finding for people who have symptoms suggestive of chronic obstructive pulmonary disease (COPD) in general practice with follow-up care and services .

We are disappointed that at the current time, although case finding being recommended by NICE in their first COPD guideline in 2004 and in every iteration since, there has been no commitment to deliver this from the NHS despite the recommendations, and support to implement this from the Taskforce. We hope that the NHS will commit to identifying people with COPD at an early stage as recommended by NICE and will commit to incentivising this until established in routine care.

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