Diagnosis working group
The Taskforce’s diagnosis working group was set up to drive forward the recommendations around improving the early and accurate diagnosis of lung disease.
The group has a wide membership of patient representatives, professional bodies, patient organisations and industry partners, and the group’s chairs can be found on our about page.
As a group we’re currently working on two main areas of work, which were identified as priorities in the Taskforce’s five-year plan. These are:
- Reducing the diagnosis backlog by supporting universal access to quality assured spirometry.
- The implementation nationwide of a pathway for diagnosing the causes of breathlessness.
- Supporting the case for a national lung screening programme.
Creating a clear pathway for diagnosis the symptoms of lung disease
Currently, diagnosis of the causes of breathlessness is often delayed or inaccurate. This leaves people waiting too long before they can access the right treatment. COVID-19 has made this worse.
Taskforce is pleased that in the last year NHS England have developed a new pathway for diagnosing the causes of breathlessness, which broadly aligns with our pathway for diagnosis of symptoms of lung disease.
The aim of the new pathway is to help achieve early and accurate diagnosis of the causes of a person’s breathlessness, with less regional variation for patients across England. The pathway supports multiple investigations, as there is rarely a single cause of breathlessness. It also includes guidance that self-management – including exercise rehabilitation and mental health support – should be offered, where appropriate, from the time patients first see their doctor about breathlessness.
The pathway is a huge step forward. However, Taskforce want to see NHS England adopt this pathway more widely and be more ambitious about the time they think people should wait to get a diagnosis. We will continue to push for this time to be reduced so it is in line with timescales for cancer. We will also be watching to see how NHS England is monitoring the implementation of the pathway, to make sure it is making a positive difference to patients.
We await with interest the results of the breathlessness pathway pilots, due out in 2023, and look forward to seeing the wider roll-out of the pathway for the benefit of more people experiencing breathlessness.
Reducing the diagnosis backlog by restarting spirometry
Spirometry is a basic breath test used to diagnose lung conditions including chronic obstructive pulmonary disease (COPD) and asthma. It can show whether breathing is being made difficult (obstructed) by narrow or inflamed airways. It does this measuring the total amount of air you can breathe out from your lungs and how fast you can blow air out.
Spirometry is a crucial test for an accurate diagnosis. During the pandemic, these tests were paused due to concerns around the risk of spreading COVID-19. This has led to significant delays for many people waiting to receive a diagnosis of their lung condition(s).
There is now clear guidance that spirometry is safe to perform, and spirometry tests are restarting in many parts of the country. However, they still haven’t restarted in a lot of areas, meaning there remains a backlog of patients waiting for an accurate diagnosis. This must be urgently remedied to ensure people with suspected lung conditions are given the accurate diagnosis they need. The availability of spirometry needs to be returned to at least at pre pandemic levels, and then increased to address rising need. We must see universal access to quality assured spirometry for all that need it.
In December 2022, Taskforce hosted a webinar on the Future of Spirometry in Primary Care in England. The webinar and a related survey of clinicians working in primary care aimed to identify the current barriers to restarting spirometry in primary care in England, explore clinical best practice solutions and develop longer term policy solutions. There is now a host of resources available to support the restart of spirometry in clinical practice here.
Taskforce will continue to push for people to receive a faster diagnosis of lung conditions which will let them access appropriate care more quickly.
Supporting the case for a national lung cancer screening programme
We would like to see a national programme in place for people at high risk of developing lung cancer. As a group we’re interested in two key projects which are helping to make the case for a national programme: the NELSON lung cancer screening trial, and the NHS England targeted lung health check programme.
In 2022, Taskforce and the Primary Care Respiratory Society (PCRS) submitted a joint response to the National Screening Committee consultation on targeted screening for lung cancer in people aged 55-74 with a history of smoking. We supported the implementation of screening to help identify more people living with lung cancer, and a recommendation to also integrate stop smoking services into these screenings.
We believe a lung cancer screening programme would also pick up many people with other lung conditions, such as chronic obstructive pulmonary disease (COPD). We have therefore called for the screening programme to also offer spirometry tests, with clear reporting and follow-up to identify and support individuals living with undiagnosed lung conditions. We must ensure that any evidence of conditions other than cancer found at these checks are not ignored.
In September 2022, the National Screening Committee recommended the introduction of lung cancer screening programme, based on Targeted Lung Health Checks. It is undertaking work to clarify the recommendations and to address challenges with implementation, but we regard this as a positive step forward. The Taskforce will be working to understand how the programme will work in practice, and to ensure everyone with symptoms of lung conditions are given the follow-up they need.