Ms Imelda O'Donovan:

First of all, data is key. From the Deputy's parliamentary questions we can ascertain a certain amount of data is being recorded but it is largely around the number of patients attending, the waiting lists, the staffing and the operational hours. Information regarding comprehensive patient data does not seem to be captured. I refer to things like the onset of symptoms, from what wave of Covid the symptoms started or whether it was due to vaccine injury. Moving on, there is the severity of symptoms, the duration of symptoms and what constitutes recovery. Do we have an actual definition of what recovery is? Does it mean going back to the person's health status as it was pre-Covid and is that uniform across all the clinics? How long does it take to get there and what is the trajectory? While they tell us that it is positive, as we do not have the data how do we have evidence that is happening, apart from anecdotally?

If we have comprehensive data - also including stuff like how it is impacting employment and how many people are able to return to work, how many people need to access disability allowance or invalidity pension and how many people have been forced to retire - these are all points that will inform us.

If we have that comprehensive information to see where the trajectories are, then we can plan our services to respond to our current needs and the projected needs. Without that vital information, everything else is anecdotal. There is an incredible opportunity here, particularly for people affected in the early stage of the pandemic. We have been keeping records of our symptoms because we did not know what was happening; nobody did. There is a massive amount of information and data available but nobody has been asking for it.

In addition, nobody in the clinics has been asking for feedback from patients. We talk about PPI and valuing the lived experience as is in the Sláintecare model, but that is not happening on the ground. When we talk about data, we are also looking for an opportunity to give feedback to the clinics. That should be fairly standard. Someone may be self-discharged or discharged by the clinic. Some people simply do not show up anymore and that could be for a variety of reasons. That might well be because the patient is too ill to attend or is disillusioned by the service they are being offered. We need to be able to capture that and ask the person why they have not been attending and then track when they are discharged if their symptoms relapse.

The one thing we know about long Covid is that it is episodic in nature. It is very unpredictable. The symptoms tend to wax and wane and there are nuances of symptoms. Just as somebody thinks they have recovered, very often the rug is pulled from underneath them and they are back with new symptoms. We need to be following the patterns to see what is happening.