PF Diagnosis, Care in UK Also Fell to COVID-19 Pandemic

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by Patricia Inácio, PhD |

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More than 100,000 fewer hospital appointments were logged by people with lung diseases like idiopathic pulmonary fibrosis (IPF) in England between March 2020 and 2021, relative to the average annual number of such appointments — which the Taskforce for Lung Health attributed to the COVID-19 pandemic and the strain it has put on hospital resources.

Taskforce analyses also found that, at the pandemic’s peak in April 2020, the expected number of booked appointments was down by 85%.

According to the Taskforce, a collaborative network of more than 30 different charities, professional bodies, and patients, this severe drop in hospital appointments to the U.K.’s National Health Service underscores that current patients are not receiving the care they need, while potential new patients are going undiagnosed and untreated for longer periods of time.

“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,” Jobie Travers, a 59-year old retired landscape gardener from Liskeard, Cornwall, said in a press release.

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“My life changed forever after I was finally diagnosed three years ago,” Travers added, noting that he was first “misdiagnosed with another lung condition, COPD.”

Delays in diagnosis means later access to key treatment, increasing the likelihood of disease progression in serious lung disorders like IPF.

“If I had been diagnosed more quickly, I would not be as far down the line with this disease as I am now. … 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,” Travers said. “I got more sick and my symptoms worsened, which means that I struggle to live my life like I used to.”

Travers also noted that, since the pandemic started, he has had “no face to face interaction with doctors or nurses except for phone calls,” adding “I cannot even imagine how terrifying it has been for people to wait for a diagnosis.”

Such concern is real, said Steve Jones, chair of Trustees at Action for 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,” he said. “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.”

A survey, conducted by Asthma UK and the British Lung Foundation and involving 4,752 people with lung disorders, reported that 25% of respondents waited six months for a diagnosis last year. In 20% of these cases, patients had to wait for more than a year.

One in five lung disease patients placed on care waiting lists waited more than a year to access to proper care.

According to the survey, the pandemic also prolonged the time that patients waited before seeking medical help, with 23% of people with symptoms of lung disease waiting for more than a year before attempting to obtain a diagnosis.

Currently, there is a lack of standard tests to diagnose breathlessness and cough, the two most common symptoms of lung disorders. As a result, patients are often left undiagnosed or misdiagnosed when seen by a general practitioner.

The Taskforce emphasizes that people experiencing symptoms of a lung disease need to consult a lung specialist.

Plans were drafted in 2019 to establish specialist diagnostic hubs for people with lung conditions across the U.K., but funds fell short to ensure their establishment last year. The Taskforce is urging these hubs be set up without further delay to eliminate backlogs in lung disease diagnosis. It is also pressing for more funding to ensure that anyone with a suspected lung disorder be able to get an accurate diagnosis as early as possible.

“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,” said Alison Cook, chair of the Taskforce for Lung Health and director of external affairs at Asthma UK and the British Lung Foundation. “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.”

While COVID-19 added to the backlog — put at 107,930 fewer respiratory hospital appointments 2020-21 relative to average annual numbers — it did not create that delay.

“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,” Cook said. “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.”

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