Mr. Michael Darragh MacAuley:

I thank Mr. Hurley for that; it was powerful. I wish everyone a good morning. I thank the Chair and committee members for giving us this hearing with the Irish Lung Fibrosis Association. I am here to give a very small insight into life with the condition. I have been a patron for ILFA since 2012 and although I have not been diagnosed, and hope not to be, I have been significantly impacted by lung fibrosis. My father, Dr. Michael MacAuley, passed away from the disease in 2012. My sister, Margaret, was diagnosed in 2020 and received a double long transplant in October just gone. Thankfully, she is with us in the Gallery. My brother, Joseph, has been diagnosed with the condition and is currently living well in Australia. On top of this, my auntie also has the disease and received a single lung transplant in 2015. Therefore, it is safe to say I know my way around the Mater hospital heart and lung ward at this stage.

I am not a consultant in this space and I will not try to be, but I want to give an overview of how I have seen family members with this condition struggle and how we could and should make their lives easier. There is no doubt that a heavy burden of familial pulmonary fibrosis exists in our family, as described above. To add to that, there is a 50:50 chance of all first degree relatives being affected by this condition, including myself. It is imperative that our health system provides adequate resources and support for affected patients and relatives, as Mr. Hurley so eloquently explained.

As someone who is passionate about the virtues of exercise from a sporting and well-being perspective, it is even more important for somebody living with lung fibrosis. It is well-recognised that exercise is a hugely important part of the journey for someone with this disease in order to protect their lung health and have a better quality of life. I have witnessed the challenges they face, particularly as their condition deteriorates, and understand the absolute necessity for access to pulmonary rehabilitation as soon as possible after diagnosis and at regular intervals as the condition progresses. Both my father and sister struggled to access this, and it is something I believe must be provided as part of our clinical care programme for all patients.

As part of the struggle for pulmonary rehabilitation classes, I have been teaching yoga, online and in person, to patients with lung fibrosis disease for more than ten years, and I have seen the benefits that has come from that both mentally and physically. Both my father and sister were on oxygen as part of their treatment. This was often a limiting factor in their exercise capabilities as they needed to ensure they always had adequate oxygen supplies. This needed to be increased significantly in order to carry out any exercise. This often causes a lot of additional stress for patients trying to conserve their oxygen supplies while balancing doing their exercise and being able to leave the house. As Mr. Hurley said, a decision on whether he can come to Dublin today should not be based on how much oxygen he may or may not have in the house.

In summary, life with lung fibrosis is hard. Please let us not make it any harder. I hope the committee listens to and acts on the requests today from the Irish Lung Fibrosis Association.