Emer Higgins (Dublin Mid West, Fine Gael) | Oireachtas source

I thank all the contributors. The discussion has been a real education and something of an eye-opener for me, particularly when it comes to ME and Parkinson's disease. I was not aware how widespread they are and how difficult it is to measure their incidence. That is a real failing and flaw within our health service.

Regarding Ms Ulpe's contribution, it is very disheartening to hear how difficult it was for her to get a diagnosis. It is simply not right. She described as crushing the challenge of the diagnosis and of not having the high-level medical consultants available who specialise in these areas. It must cause many challenges within the health service. I support what Senator Seery Kearney said about accepting the letter and getting the committee to act on that. That would be a really strong statement and I am happy to be part of it.

Ms Casserly spoke about her experience with Parkinson's disease as feeling like she is a swan. As somebody who has had to navigate through the service, who was an unlikely candidate for the disease and who, because of her age group, did not have access to naturally occurring peer-to-peer mentoring, I am delighted she is getting help now and that those groups have provided so much support. Both Ms Casserly and Ms Ulpe spoke about the need for a database of organisations and, even more importantly, a database or register of patients. To use Ms Wehrly's word, that really needs to be streamlined. I think this committee can put pressure on the HSE to provide the resources to make it happen.

The need for a database of patients leads on to what Ms McGreehan spoke about as somebody who is working and making a huge contribution to the economy as well as battling many other challenges. Without additional leave, going up and down to Dublin or wherever else is putting people like her and Ms Wehrly under a lot of pressure. Action in that regard sounds very doable and it needs to happen hand in hand with the setting up of a register of patients. It should be relatively easy on an administrative level to make that happen if the will is there, and the budget, to do it. My question to the witnesses is what that would that look like in terms of the amount of leave - specifically, the number of days - that would suffice to start with and how that leave might be drawn down.

Ms Wehrly referred to housing adaptation grants. I would be really interested to hear how she thinks we could help with that barrier. If, for instance, we were to make the adaptation grant available to renters, does she think there would be buy-in from landlords? Would such provision be of practical assistance or do we need to think more outside of the box on this?