A national patient charter to support people who have been diagnosed with the lung disease, idiopathic pulmonary fibrosis (IPF), has been developed.

IPF is a chronic and terminal disease that affects up to 1,000 people in Ireland, with around 360 new cases diagnosed every year. The disease causes the development of scar tissue (fibrosis) in the lungs. This causes the lungs to become stiff, preventing them from working properly.

Those affected experience severe breathlessness, coughing, fatigue and ultimately, respiratory failure. Patients often require oxygen therapy 24 hours a day. The cause of the disease is unknown.

This new patient charter has been developed by the Irish Lung Fibrosis Association (ILFA) to support those affected, to empower them to know how to access the best treatment available and ‘to give them a clear expectation of the standard of care they should receive on diagnosis'.

The charter was developed with input from IPF patients, their carers and healthcare professionals. It identifies six key areas that will benefit patients:

-Early and accurate diagnosis with input from a multidisciplinary team
-Clear and concise information about the disease in plain language
-Access to appropriate medication and oxygen therapy
-Early referral to pulmonary rehabilitation and exercise programmes
-Early referral to the National Lung Transplant Unit for assessment, with minimal emphasis on age
-Access to social, emotional and practical support.

Speaking about the charter, consultant respiratory physician, Prof Jim Egan, described it as a ‘milestone in patient care'.

"The charter will empower patients and their families to better understand the options available to them, what to expect following diagnosis and how to access the very best of IPF treatment. It will also serve as a guide to healthcare professionals in implementing the highest standards of patient care," he commented.

The charter can be seen here, along with a short explanatory video here