Tens of thousands of people in the UK might get a late ‘lung disease’ diagnosis, charity warns

The Taskforce for Lung Health urges the NHS in England to give patients with suspected lung disease rapid access to CT scans

One in five1 people with lung cancer in the UK – an estimated 10,000 people every year - are getting diagnosed late due to ‘ineffective’ tests, putting them at risk of their condition deteriorating or even dying earlier, according to the Taskforce for Lung Health.

The Taskforce, a collaboration of over 40 different charities and organisations aiming to improve the nation’s lung health, says currently guidelines2 from National Institute for Health and Care Excellence (NICE) recommends that most patients presenting with respiratory symptoms (such as chronic breathlessness, cough or persistent chest infection) in primary care should be sent for a chest X-ray first to assess for various conditions.

Yet chest X-rays have limitations in identifying serious lung conditions such as lung cancer as not all abnormalities are visible on an X-ray image. Evidence suggests 90% of missed lung cancers are from X-ray imaging1 as the heart and bony structures on the two-dimensional X-ray image can obscure parts of the lung3.

People with idiopathic pulmonary fibrosis (IPF), a lung condition that causes irreversible scarring of the lungs, increased difficulty with breathing and a life-expectancy of just three to five years, may also fail to get a diagnosis with just an X-ray because of the low sensitivity of the imaging. This can sometimes give false assurances to the patient and referring healthcare professional that nothing is wrong.

In fact, in a recent study, people with IPF waited two years for a diagnosis, and 1 in 5 patients reported three or more visits to their GP before being referred further to a secondary care hospital4. Due to the prognosis of IPF, efforts to reduce this delay are important in order to initiate early treatment and prolong survival.

The Taskforce for Lung Health is urging the NHS to encourage the use of computed tomography (CT) scanning on patients with suspected lung conditions as it is a more sensitive and accurate test than a chest X-ray, and experts say it is a better first-line test when patients are presenting with potential lung cancer symptoms. This would give patients the best chance of early diagnosis, opening access to the best available treatments to manage their symptoms and cure or slow the progression of their disease. It is calling for the NHS to give GPs powers to refer patients straight to a CT scan without the need for a chest X-ray, where there is obvious risk of lung cancer or their symptoms do not fit the criteria for common lung conditions.

The NHS also needs appropriate funding to deliver these imaging services. The Taskforce have developed a patient pathway for primary care use, to help GPs diagnose respiratory symptoms and improve access to the right assessment for people with complex cases of breathlessness and cough.

The Taskforce are not alone in this call for clearer guidelines. The Healthcare Safety Investigation Branch (HSIB) published a report1 in October 2021 exploring the missed detection of lung cancer using chest X-rays. Their recommendations agree that CT scanning is a more definitive test for diagnosis and that current advice for health care professionals needs to be clearer and detail what should be offered to patients who have ongoing, unexplained symptoms after a negative chest X-ray.

John Conway, 57, a technical specialist from London, was diagnosed with IPF in October 2015 almost 2 years after first visiting his GP to get his symptoms checked.

He said: “I first contacted my GP about a consistent cough and shortness of breath in 2013. I was given a precautionary X-ray as I have a history of pulmonary fibrosis in my family but the results were all clear, suggesting there was nothing wrong The following year, I returned to the same doctor for my yearly check who organised another X-ray. The scan showed a net-like structure on the lower part of the lungs which is a precursor to developing 'scarring’, and I was referred to a specialist. In January 2015, I met the specialist for a full lung function test. Following months of more tests, including a CT scan and a lung biopsy, I was finally diagnosed with IPF.

“Being diagnosed with such an aggressive lung condition is a life-changing moment, and delays mean that people like me lose precious time to slow down its progression and get the support they need to live well with a lung condition.

“I believe a diagnosis may have been reached sooner at secondary care if my family history was considered more carefully and the right tests were done at the right time to rule out possible IPF before testing for other lung diseases, with a less severe prognosis.”

Dr Alison Cook, Chair of the Taskforce for Lung Health, said: “Anyone living with a suspected lung condition should be able to get a diagnosis as soon as possible. For the NHS to keep using X-rays on patients who need access to the available better technology, is a second-class service. Sending NHS patients who have urgent symptoms of lung cancer for a chest X-ray, only to have to follow up with a CT scan, is shameful. It creates needless extra work for the health service, means patients are sent back and forth for tests, causes delays and can even cost lives.

“We’re calling for NHS England to implement a local pathway for diagnosing respiratory conditions taking factors such as age, symptoms and smoking history into account. Clear guidelines would enable GPs to easily identify and refer patients who should be going straight for CT scans, aiming to secure a quick diagnosis. The quicker a condition can be identified, the quicker people will receive the urgent care they need.”

Sarah Woolnough, CEO of Asthma + Lung UK, added: “It’s completely unacceptable that tens of thousands of people with lung conditions, including lung cancer, might be completely unaware that they are living with a potentially life-limiting disease or wait years for a diagnosis, because the tests used are too crude. They could lose precious years of their life because they aren’t getting the care and treatment they so desperately need for serious symptoms like debilitating breathlessness.

“Sadly these new figures are yet another example of people with lung conditions being side-lined and neglected. About 12 million people in the UK will develop a lung condition in their lifetime but lung health is just not taken seriously – there are damaging misconceptions that prevent people getting the help they need and less than 2% of public-funded research is spent on lung conditions. We need action now and are urging government to triple funding for respiratory research to identify new ways of diagnosing and treating people with lung conditions, tackle toxic air pollution and ensure better diagnosis and care for everyone with a lung condition.”

Dr Jonathan Rodrigues, Consultant Cardiothoracic Radiologist at Royal United Hospitals Bath NHS Foundation Trust and Guidelines/Standards lead for The British Society of Thoracic Imaging said: “We know that CT scans outperform X-rays when screening for lung cancer in high-risk asymptomatic individuals. It seems logical that we should also do CT scans as the first line test in certain groups patients with signs and/or symptoms of lung cancer. We are currently designing a pragmatic clinical trial which aims to determine if a CT-first approach in patients with suspected lung cancer is feasible and cost-effective for the NHS.”

Read the full policy paper from the Taskforce for Lung Health here.

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Notes to editors:

  1. Healthcare Safety Investigation Branch (HSIB). 2021. Missed detection of lung cancer on chest X-rays of patients being seen in primary care.
  2. National Institute for Health and Care Excellence (NICE). 2021. Suspected cancer: recognition and referral.
  3. Difficulties in the Interpretation of Chest Radiography. 2011.
  4. Risk factors for diagnostic delay in idiopathic pulmonary fibrosis. 2019.