Please see the various publications and reports included below that are relevant to lung fibrosis. These important documents will tell you more about the standard of care that should be available to patients, caregivers and healthcare professionals to ensure you can manage your condition. Reports from ILFA’s World Cafe events with our stakeholders, and our annual reports are included here for your information. We hope you will find these publications useful.
Please click here to read the 2018 Position Statement from the Irish Thoracic Society (ITS) on the Management of IPF that was launched in August 2018 at the Royal College of Physicians of Ireland.
The ITS Position Statement
ILFA developed the National Patient Charter for Idiopathic Pulmonary Fibrosis (IPF) to support patients and their families, empower them to look for best treatment and give them a clear expectation of the standard of care they should receive. The charter was developed with the input of IPF patients and carers, health care professionals and professional respiratory organisations. The National Patient Charter for IPF identifies six key areas needed to ensure IPF patients get the best level of care.
The National Patient Charter for IPF was launched on 6th October 2015 during IPF World Week.
Click here to read the full charter
In 2018, ILFA held its first meeting on Palliative Care and Planning for the Future with our stakeholders to explore the palliative care and future care planning needs of people with pulmonary fibrosis, and to share ideas on how best to address these needs. Adopting a ‘World Café’ approach, patients, family members, healthcare professionals working in hospitals, hospices and community settings, representatives from the clergy, the Irish Hospice Foundation, and pharmaceutical and oxygen companies contributed to the discussions. A report was subsequently produced to share with the information that was discussed at the meeting and steps we have taken since the event with our members. The report is available to read here
World Café Report on Palliative Care
The World Café methodology was published in the British Medical Journal Supportive & Palliative Care in October 2021 and is available to read here
Fibrotic interstitial lung disease – palliative care needs: a World-Café qualitative study
Approximately 1,000 people in Ireland are living with pulmonary fibrosis however, ILFA is aware of inadequacies in care delivery for those diagnosed with the condition. It has been proposed that many of the issues around the accessibility and quality of care for pulmonary fibrosis could be resolved by the development of a national clinical care pathway for pulmonary fibrosis, as exists for other diseases.
The “ILFA World Café on Pulmonary Fibrosis Services in Ireland during COVID-19 and Beyond” was developed to capture stakeholders’ experiences around care access for pulmonary fibrosis, both before and during the COVID-19 pandemic, to better understand the challenges in obtaining and providing high quality pulmonary fibrosis care and gain insights on the priorities for future care. ILFA was enormously grateful to receive funding from The Community Foundation of Ireland/RTE Does Comic Relief Adapt and Respond fund and Roche Pharmaceuticals Ireland to help support this important project
The World Cafe On Pulmonary Fibrosis Services in Ireland during Covid-19 and Beyond was shortlisted for the 2021 Patient Organisation Project of the Year at the Irish Healthcare Awards.
World Cafe Report on Pulmonary Fibrosis Services in Ireland
Click here to read ILFA’s recent Annual Reports.