Ms Nicola Cassidy:

A lot of our programmes have been developed because of that need. We frequently do member surveys and ask them how we can help them. Exercise is a huge aspect of patient care. Self-care is really important for those people who cannot access hospital care or if they do not have access to a respiratory nurse specialist. To give the committee an example, the UK's National Institute for Health and Clinical Excellence, NICE, guidelines recommend that every lung fibrosis patient has a respiratory nurse specialist. In a recent survey we did, 58% of Irish patients had access to a nurse specialist, so almost half do not. We are failing those patients. I emphasise the role of the nurse specialist because it is a gateway to care. Those nurse specialists who are in the system are happy to take phone calls from patients and to direct them, whether they need to access physiotherapy or whether it is a social worker or a psychologist. When it comes to pulmonary rehab and the care of the physiotherapy team, however, only 38% of patients in a recent survey we did had access to physiotherapy. I cannot emphasise enough its importance. It keeps people well. It maintains their lung function when possible, and then, when they start to deteriorate, their care can be escalated. We have a respiratory physiotherapist here who will be able to tell the committee much better than I will the impact it has on patients but, certainly, patients feed back to us how important it is.

When the pandemic came along, everything shut down and there was no access to pulmonary rehab, so we started our online classes. We started with one class a week and progressed to two classes a week, and we are now at three classes a week. We are at maximum capacity and we fundraise to provide that service, but we could fill five classes a week. That is why we are here. At the moment, the patients with lung fibrosis are excluded from pulmonary rehab in the community because we are not part of the respiratory clinical care programme. That is direct discrimination. If our patients want pulmonary rehab and it keeps them well, they should not be excluded.