Oireachtas Joint and Select Committees

Wednesday, 24 April 2024

Joint Oireachtas Committee on Health

Health Services for Persons with Lung Fibrosis: Discussion

Photo of David CullinaneDavid Cullinane (Waterford, Sinn Fein) | Oireachtas source

Before Ms Cassidy does so, I say to the Chair that this is not rocket science. The first thing we need is the patient registry. Without that, as Ms Cassidy has said, you cannot plan. Whether it is the current or a future Minister for Health or those in the HSE, you need to have the data. In far too many areas of healthcare we are not collecting the data. We do not have registries. This is one of a number of occasions where this has come up recently at the Oireachtas health committee. A registry would be a starting point, followed by a clinical care programme to encompass all of the issues that have been raised, and then the funding. If the funding does not come, you can have a clinical care programme but patients will not get the benefit of it unless it is properly resourced. I am also amazed that the organisation does not receive any funding. Its work is obviously very important. The representatives are advocating. This also comes up a lot, where we have very professional organisations advocating on behalf of citizens but not being supported. I wanted to say that because we will be tight on time and I may not be able to come back in. I am handing over the remainder of my time to the delegation to again expand on the importance of access to pulmonary rehabilitation and the clinical care programme. If the Minister for Health were here, what advice would they give him and what would be their main asks of him and the Department of Health in delivering in this area?

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