Three new patient services for fibrosis now available from Irish Lung Fibrosis Association, funded and supported by HSE

To mark Pulmonary Fibrosis Awareness Month this September the HSE and the Irish Lung Fibrosis Association (ILFA) are raising awareness of three new patient services for fibrosis patients, that are supporting them in person and online in the comfort of their own home. 

Pulmonary fibrosis (also known as lung fibrosis) is the name for a group of diseases in which scar tissue (fibrosis) develops in the lungs. It causes inflammation and/or scarring that damages the ability of the lung to absorb oxygen from the air, making breathing difficult. It is a progressive, life limiting disease, and it is estimated that 5,000 people in Ireland are living with the condition.

This year the ILFA, funded by the HSE and supported by the HSE National Clinical Programme for Respiratory is supporting people living with lung fibrosis through the following new services:

1. ILFA Advice Line, an ILD (Interstitial Lung Disease) Nurse-Led Telephone Advice Line, providing direct access to timely, expert support, information and guidance from an experienced respiratory nurse specialist
2. New Psychological Grants Scheme, providing six sessions of specialist psychological counselling for patients and family members
3. Virtual Pulmonary Rehabilitation (VPR) Service, providing access to specialist exercise and education programmes without having to leave home.

Professor Breda Cushen, HSE Clinical Lead for Respiratory, said; “These three new services for people living lung fibrosis delivered by ILFA, with funding and support from the HSE, provide care to patients where they need it, when they need it.  Lung fibrosis is a progressive, life limiting disease whose patients face significant physical and mental health challenges. The new ILFA nursing advice lines, psychological grants service and Virtual Pulmonary Rehabilitation Service ensures patients and their families are empowered and supported by experts across Ireland, and benefits people who may have difficulty travelling to in-person services due to distance, mobility limitations or health concerns.”

ILFA Advice Line

Priyanka Thitme, ILD Nurse with the Irish Lung Fibrosis Association (ILFA), said; “Living with lung fibrosis can be overwhelming, particularly when new symptoms arise or there are concerns about treatment and disease management. The Nursing Advice Line provides patients and their families with direct access to specialist support, helping them to better understand their condition and make informed decisions about their care.

“We are committed to ensuring that no person living with lung fibrosis feels alone and that they have access to reliable information and guidance when they need it most. The feedback received so far shows the difference it can make when people have time to talk, feel listened to and can access clear information from a nurse who understands ILD.”

Psychological Grants Scheme

Dr Alexis Carey, Psychologist working with ILFA, said: "From a professional psychological perspective, one of the most significant aspects of the work has been supporting individuals to acknowledge and process grief. Receiving a life-limiting prognosis (often framed within a 2–5-year timeframe) can bring profound emotional challenges. Many individuals describe a tendency to avoid burdening or distressing family members, and focusing on others, they perceive as worse off than them, which can lead to unprocessed emotional experiences.

“Having a safe, therapeutic space in which to both grieve and reflect on meaning, purpose, and how they wish to live their lives moving forward has been particularly beneficial. This work appears to support not only emotional adjustment but also a greater sense of agency and clarity for patients navigating an uncertain future.”

Virtual Pulmonary Rehabilitation (VPR) service

Ciara Scallan, Senior Respiratory Physiotherapist with ILFA, said: “The Virtual Pulmonary Rehabilitation Service ensures that people living with lung fibrosis can access specialist support regardless of where they live. The programme not only helps participants improve their physical fitness and symptom management but also provides valuable peer support and connection. We are committed to making evidence-based care more accessible and empowering people to live as well as possible with lung fibrosis.”

For more information about these new initiatives visit www.ilfa.ie and HSE.ie.