ILFA has a range of patient information leaflets and videos to help you learn more about lung fibrosis. Please click the links below to read the leaflets or contact ILFA to request a Patient Information Pack with printed materials.
ILFA’s resources are provided free of charge to lung fibrosis patients and healthcare professionals.
Acute Exacerbations and Pulmonary Fibrosis
Telemedicine: Phone and Video Consultations – a guide for patients
Getting the most out of your hospital appointments
The National Patient Charter for Idiopathic Pulmonary FIbrosis
ILFA has a YouTube Channel where you will find recordings of our Patient Information Days, webinars and other useful videos. You will also find videos of people sharing their lived experience of lung fibrosis.
Click on the images below to learn more about Idiopathic Pulmonary Fibrosis (IPF).
ILFA conducted a research survey in 2020 to determine the impact of Covid-19 on our patients, caregivers and healthcare professionals. Click the images and links below to see our infographics that showcase the major findings.
Summary results from the ILFA Survey (2020)
Healthcare Professional Survey Results (2020)
ILFA has a variety of practical aids to assist patients with lung fibrosis. Please contact ILFA if you would like to request any item. All of ILFA’s resources are provided free of chanrge to ILFA’s members and healthcare professionals working in respiratory medicine.
Breathlessness is a common and distressing symptom for patients with lung fibrosis that can impact on quality of life. Research has shown that using a hand-held fan to blow air across the nose and mouth can help reduce the sensation of breathlessness for patients with breathing difficulties. ILFA’s hand-held fans are available free of charge for patients, respiratory nurses and physiotherapists to order.
The ILFA STALL Card is designed to be carried in a wallet, purse or pocket and it has simple instructions on how to control your breathing if you experience breathlessness. Show this card to your caregiver / companion so that they can help you if you have breathlessness.
ILFA STALL breathing technique
(S) Stop what you are doing
(T) try to remain calm and turn up your oxygen if necessary
(A) assume a position of comfort for example sitting, leaning forward against furniture or a wall, resting your shoulder against a wall for support
(L) let yourself daydream and imagine yourself in a safe, relaxing, tranquil place
(L) let your breathing return to normal.
Patients who use supplementary oxygen can request an ILFA Medical Alert Card for their wallet, purse, bag or oxygen carrier. The Medical Alert Card contains important information about your healthcare team and your oxygen company in case this information is needed in a medical emergency.
The specific oxygen requirements of lung fibrosis patients are different to those with other chronic respiratory disease.
Contact ILFA by emailing email@example.com or calling 086 871 5264 to request your Medical Alert Card.
The ILFA Directory of Services aims to provide patients with accessible information on the resources available to them in order to enhance their activities of daily living and to improve their quality of life.
The Directory of Services also contains a nationwide listing of some companies that provide appliances, products, and services that may be useful to patients with lung fibrosis. We hope that by providing this information in one source, the Directory of Services saves patients and their families considerable time and effort when trying to access services.
Our Directory of Services was compiled using the shared experiences and knowledge of lung fibrosis patients, along with supplementary research.
An electronic version of The Directory of Services is available to download. Please note this ocument is being updated.
A hard copy of the Directory of Services can be requested by contacting the ILFA.
Headspace The app can be downloaded onto a smart device and you can try it for FREE. At the moment, there are additional free resources in a section on the app called ‘Weathering the storm’ that vary in length.
Mindfulness and Relaxation Centre, Beaumont Hospital– there is a fantastic range of meditations and relaxation exercises on this site so hopefully there’s something for everyone!
Stress Control – This website will help provide you with skills to fight stress (for most of us, a mix of anxiety and depression) and boost your wellbeing.
List of counselling and mental health support services available, including supports for different age groups, mobile apps, phone and online resources.
Advice on how to cope during these challenging times including looking after our physical and mental health
Minding your mental health during Covid
Information and support for people experiencing mental health difficulties
Information line (01) 284 1166 (from 9am to 5pm Monday to Friday)
www.mentalhealthireland.ie or email firstname.lastname@example.org for more information
Free online Stress Control classes available via youtube at 2pm or 8:30pm (Mon and Thursdays x 6 weeks) – started on Monday 13th April
If you are struggling with increased anxiety, feeling depressed or have suicidal thoughts, please seek help and contact your GP or go to your local Emergency Department for help
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.
Three ILFA Newsletters are produced each year. The newsletter contains information on our most important news and events as well as updates on ILFA’s advocacy work, recent education and research activities, and fundraising events.
We are always delighted to receive articles and would love to hear from you if you have any suggestions for content.
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