Pulmonary fibrosis (PF), an incurable lung disease, could be a long-term respiratory consequence of Covid-19, yet pulmonary rehabilitation programmes have been cut short, or cancelled, as a result of pandemic.
Of those who said they had medical appointments (82.9%) cancelled, 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 given people with PF are more at risk from lung infections and viruses, including Covid-19.
Average survival from pulmonary fibrosis is between three and five years. For around one in ten people diagnosed, there may be a family history of the condition.
Universal access to pulmonary rehabilitation needed
Dr Phil Molyneaux, Consultant Respiratory Physician at Royal Brompton and Harefield Foundation NHS Trust, and Clinical Senior Lecturer in interstitial lung disease at Imperial College London, said: “The symptoms of PF and IPF, such as shortness of breath, persistent dry cough and ongoing fatigue can often be confused with other more common respiratory diseases, as well as heart failure, and this will often delay diagnosis."
The Pulmonary Fibrosis Trust is calling for further education of the symptoms of pulmonary fibrosis among doctors and the general public - as well as universal access to pulmonary rehabilitation.
Nearly half (48.3%) of the survey respondents said it 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
Peter Bryce, chair of the Pulmonary Fibrosis Trust, said: “PF is a horrible, cruel and irreversible disease with a worse prognosis than many types of cancer. Unfortunately, as a consequence of the current coronavirus pandemic, we could see many more people, of all ages, requiring pulmonary rehabilitation. Yet, just when people need it most, we are seeing a reduction in this type of support.”
About 70,000 people in the UK are affected by PF – with over 32,500 living with the more common and progressive form, idiopathic pulmonary fibrosis (IPF) – which has no known cause. Treatments for PF will depend on the cause of the fibrosis.
For IPF, treatment can include medication to slow the rate of scarring, known as antifibrotics. However, currently they can only be prescribed to people whose lung function falls within a set range. As a result, many people rely on medication to suppress their symptoms such as immunosuppressants and supportive care such as oxygen therapy and pulmonary rehabilitation. For very few, lung transplantation may be possible.