People with lung disease waiting over a year for treatment as backlog of lung health care reaches 100,000 appointments in England

The Taskforce for Lung Health is warning that the backlog has created delays to lung disease diagnosis which could lead to people dying before they are treated

As a result of the pandemic, there have been 107,930 fewer hospital appointments for respiratory in England1 compared with the average number seen each year, according to new analysis by the Taskforce for Lung Health. The collaboration, which incorporates over 30 different charities, professional bodies and patients looking to improve lung health, also found that during the peak of the pandemic, the number of expected appointments taking place was down by 85%.2

The Taskforce is now warning that this many fewer than expected appointments suggests that there is currently not enough capacity to see and support all of the patients who need care. This means that if this is not urgently addressed people waiting for care will not only be dealing with life-limiting breathlessness and worsening symptoms, but may even be at risk of dying before they are diagnosed and treated.

The analysis has been released alongside the results of a survey of 4,752 people with lung conditions by members of the Taskforce, Asthma + Lung UK, which showed that a quarter of people diagnosed with lung conditions in the past year had to wait six months for a diagnosis.3

The Asthma + Lung UK survey also found that:

  • 1 in 5 (20%) of people had to wait longer than a year for a diagnosis last year
  • More than a fifth (23%) of people experienced symptoms of a lung condition for over a year before seeking a diagnosis
  • 1 in 5 people on waiting lists for care have been waiting for the care they need for more than a year

The Taskforce argues that it is crucial that people with suspected lung conditions have timely access to specialists who can support the diagnosis and ongoing management of their condition.

Because there is no standardised clinical pathway for diagnosing breathlessness and cough (which are the most common symptoms of lung disease), people with suspected lung conditions who see their GP have always been at risk of being misdiagnosed or left without a clear diagnosis. Even before the pandemic, people who experienced worsening or particularly severe symptoms often had to wait too long to get referred to and seen by specialist teams, leaving them at risk of hospitalisation. The current backlog has meant that this problem has greatly increased and services will be unable to support the number of people in need even if they return to pre-pandemic levels of capacity.

For people with conditions such as idiopathic pulmonary fibrosis, which has a life expectancy of three to five years after diagnosis, any delays in diagnosis could mean the difference between life and death as access to life-extending treatments is only possible after diagnosis.

Jobie Travers, 59, a retired landscape gardener from Liskeard, Cornwall, struggled to get an early and accurate diagnosis for idiopathic pulmonary fibrosis (IPF). Jobie said, “Living with IPF is basically like being underwater and struggling for breath, and everything feels like it’s in slow motion. It took two years and eight months to get to the point of a diagnosis and waiting so long to get diagnosed left me feeling alone and forgotten – my life changed forever after I was finally diagnosed three years ago. Before that, I had been misdiagnosed with another lung condition, COPD.

“If I had been diagnosed more quickly, I would not be as far down the line with this disease as I am now. Because I was originally misdiagnosed, I had to wait months for scans and consultations which meant that I didn’t receive medication or treatment that would have controlled or slowed down the progression of the disease. While I was waiting to find out what was wrong with me, I got more sick and my symptoms worsened, which means that I struggle to live my life like I used to. Since the pandemic, I’ve had no face to face interaction with doctors or nurses except for phone calls. I cannot even imagine how terrifying it has been for people to wait for a diagnosis during the pandemic.”

Steve Jones, Chair of Trustees at Action for Pulmonary Fibrosis, said, “This is a real concern for patients with pulmonary fibrosis. Even before the pandemic, it took on average seven months to be diagnosed with pulmonary fibrosis, with over 20% of people taking over a year. 

“With Covid this has risen sharply with diagnostic testing facilities at hospitals closed or unable to operate fully. There is now a backlog with patients waiting for diagnosis and tests and unable to access life extending anti-fibrotic medicines.”

Specialist diagnostic hubs have been cited as a solution to this problem, as they would play an important role in supporting the diagnosis of people with lung conditions as well as other diseases. In January 2019, NHS England made a commitment in the Long Term Plan to review diagnostic hubs through the independent Richards Review.4 Professor Sir Mike Richards then published the Richards Review in October 2020,5 strongly advocating for the establishment of diagnostic hubs across the country.

However, the funding commitments made in the Spending Review in 2020 did not go far enough to ensure the development of these hubs at scale across the country.5 The Taskforce is therefore calling for urgency in establishing these hubs to address any backlogs to lung disease diagnosis, and for increased funding to ensure that everyone with a suspected lung condition can get diagnosed as soon as possible.

Alison Cook, Chair of the Taskforce for Lung Health and Director of External Affairs at Asthma + Lung UK, said, “The heart-breaking reality of these figures is that some people will die before they find out what’s wrong with them. That’s why any delays to lung disease diagnosis and treatment are simply unacceptable. People shouldn’t be waiting up to a year to get a diagnosis, or waiting months for treatment and care. We must address this, now.

“The pandemic has had catastrophic consequences for people living with lung conditions, but it is important to remember that well before these delays to care, outcomes for people with lung disease had not improved in over a decade. If funding lung disease care does not now become a top priority for the government and the NHS, again it will be patients who will pay the ultimate price”.

 

-ENDS-

For more information or interview requests contact Eve Kasperaviciute on ekasperaviciute@auk-blf.org.uk, 07710 707871

Notes to editors:

  1. This analysis was calculated using data from the NHS referrals dashboard: https://digital.nhs.uk/dashboards/ers-open-data. The Taskforce looked at the period between 9th March 2020 to 8th March 2021, compared with the baseline provided by NHS England.
  2. This analysis was calculated using data from the NHS referrals dashboard: https://digital.nhs.uk/dashboards/ers-open-data. The Taskforce looked at data covering April 2020.
  3. Data via an Asthma + Lung UK survey of people with lung conditions. Survey ran from March 3rd – 10th 2021, and received 4, 730 respondents. 397 of these respondents were on a waiting list for either diagnostic tests, a procedure or a referral to specialist care.
  4. NHS Long Term Plan, 2019. https://www.longtermplan.nhs.uk/
  5. Richard’s Review, 2020. https://www.england.nhs.uk/publication/diagnostics-recovery-and-renewal-report-of-the-independent-review-of-diagnostic-services-for-nhs-england/
  6. Spending Review, 2020. https://www.gov.uk/government/publications/spending-review-2020-documents/spending-review-2020

About the Taskforce for Lung Health

The Taskforce for Lung Health is a unique collaboration between patient representatives, health care professionals and other experts. Over 30 members have a shared vision for lung health; we want to transform the care and treatment for patients and change the mortality rate for lung disease, which has barely improved in over a decade.

Coming together for the first time in 2018, we developed a five-year plan to improve lung health in England. Our report makes vital, realistic recommendations to NHS England and other governing bodies about all aspects of lung health; from prevention and diagnosis right through to end of life care. Together we’re giving people with lung disease a powerful voice. For further information visit www.blf.org.uk/taskforce

About Asthma + Lung UK

Asthma + Lung UK merged on the 1 January 2020. 

Asthma UK’s mission is to stop asthma attacks and, ultimately, cure asthma. We do this by funding world leading research, campaigning for improved care and supporting people to reduce their risk of a potentially life-threatening asthma attack. We are entirely funded by voluntary donations. For further information, please visit: asthma.org.uk. 

Asthma + Lung UK offers hope, help and a voice to the 1 in 5 people in the UK affected by lung disease. We provide support and information to improve the everyday lives of people with lung disease. We are also campaigning for better diagnosis, treatment and prevention for now and the future. For further information, please visit blf.org.uk.

 

About Action for Pulmonary Fibrosis

Action for Pulmonary Fibrosis (APF) is a growing community of patients, families, researchers and healthcare professionals striving to find a cure for pulmonary fibrosis so that everyone affected by the disease has a better future. We provide personalised support to patients and families – and raise awareness of pulmonary fibrosis through campaigning, fundraising and education. We are also committed to funding research to improve quality of life for people living with pulmonary fibrosis today and tomorrow. Find out more at https://www.actionpf.org/