Ms Olga Wehrly:

I thank Ms McGreehan. I loved listening to what she said. She is right, and it was a core point in my opening statement as well, that we are not being counted. That is really important. Judging by the Facebook groups, there are 2,500 people in the long Covid support group. That is a condition that has only sprung up in the past year and a half or two years. Then there are ADHD groups. There are 4,500 people in one of the support groups I am in for ADHD. That is 4,500 people who are not getting access to ADHD services. There are approximately 1,000 people in the EDS groups, but they are English speakers and they are all from the same kind of community. Peer support is amazing when joining these groups from around the world and you get access to tips that work and pathways to seek help. It is coming from the wrong place though; it should be community-based because it would be the best way. It should not necessarily be medicalised but it should be within our local health centres with our public health nursing teams or whatever so that one can access this information. It could even be online on the HSE website or Department of Social Protection websites.

I would also like to say that for us it involves a lot of form filling all of the time, just like Ms Ulpe was saying, and it includes printing costs and so on. Language is important and the forms contain a lot of jargon. They are written for people who work in these offices and were expected to read them and understand what they mean. They need to be in clear English and not everybody in Ireland has English as a first language. It is not only about the language in the forms, it is also about the tone. There is almost a sense of entitlement levelled at people. It is as if they are asking for something they should not have asked for. It is already demeaning enough to have to try to find your place in society without coming up against this barrier. I know these forms have been used for years but going forward they need to be made more inclusive of everybody to retain people’s dignity.