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National Patient and Carer Survey results

7 December, 2020

COVID-19 has had an unrelenting impact across the Pulmonary Fibrosis (PF) community from long term PF patients, right through to those facing an imminent diagnosis.  The long-lasting impact of COVID-19 is yet to unfold, but emerging data is already revealing that Pulmonary Fibrosis could be a long-term respiratory consequence of COVID-19.

The Pulmonary Fibrosis Trust recently conducted a UK patient and carer survey to gain a better insight into the actual, real life impact the pandemic has had.

Click to view/download the key results here

Most PF patients have had to experience the isolation of shielding, being cut off from their vital support networks, and their usual access to health services severely reduced.

Despite an expected rise in respiratory complications because of the virus, pulmonary (lung) rehabilitation programmes have been cut short, or cancelled, due to COVID-19 just when people need it most.  According to our survey, more than a third (37.2%) of PF patients had their exercise and education programmes (pulmonary rehabilitation) halted since the start of the pandemic.

Kim Verry, Clinical Specialist Respiratory Physiotherapist, Wirral, and adviser to the charity, says:  

Pulmonary rehabilitation is an essential part of managing pulmonary fibrosis and other lung disease. In some form, it may prove beneficial for people recovering from the long-term impact of COVID-19.  Exercise and education programmes help patients to improve management of their breathlessness and symptoms. Without it, there can be a decline in their quality of life.

In addition, of those surveyed, 82% said they had medical appointments cancelled due to the pandemic – and almost half (49.3%) claimed their health had worsened as a result of missing appointments. In addition, nearly half (44 %) of respondents said they did not feel safe to leave their home after the previous Government shielding advice ended 5 given people with PF are more at risk from lung infections and viruses, including COVID-19.

Nearly half (48.3%) of the survey respondents said it also took six months or more to diagnose their condition and nearly nine out of ten surveyed (87%) said they had never heard of the disease before they were diagnosed.

We, as a charity are calling for further education of the symptoms of pulmonary fibrosis among doctors and the general public, as well as universal access to pulmonary rehabilitation and practical equipment.

Click to view/download the key results here