Ms Fiona Bardon:

On whether I have seen improvements, some of the issues relate to the number of rules and guidelines to be followed by different areas of government, such as county councils and so on. I read recently on our Facebook group that a man had a stroke two years ago and has been in rehab on and off since. He has been given notice to vacate his council house because he has broken the rules of not residing at his property. He is being evicted because he was getting help to get better, and he will not have anywhere to live at the end of the month. This is just crazy. It does not make any sense. He has made all his payments and he had his friends and family check on the property when he was not there, and now he will effectively be made homeless. No special dispensations or exceptions are in place for people who need them.

When we were talking in our groups, we said Covid probably helped some of us in that life became much slower and there was less pressure to socialise. We were able to take a step back and have space, with less pressure on us. At the same time, Covid was also a great excuse for the health service to say it could not provide a support any more, and then the HSE cyberattack happened as well. It was almost a double whammy. When one service resumed, the HSE did not have access to files, which meant appointments were pushed back further. It has been probably seven months since I had any real support from the NRH, which is quite a long time, given I had to wait so long to get the services in the first instance, and it is definitely not just in my case.

I am aware I am talking about my story only. Throughout the country, there are many other people like me with acquired brain injuries or other acquired disabilities or who have been born with disabilities. Because I have made such a good recovery physically, I do not have the experience to be able to speak on behalf of people who have acquired physical disabilities. I do not really understand that part of the challenges they face every day. As Ms Farrell said, you almost have to embarrass people into giving you the services or embarrass yourself to get them.

That is not good enough. I feel that I have nearly had to become pushy to get the services I need. That is not me; it is not my personality. I have had to become a person I am not in order to just get better. The services that are required are not there. It is not in my nature to be like that, but if I am not like that I get passed over or overlooked. What about the people who do not have the confidence to do that or who do not say, "I deserve better and I deserve this type of support"? They are not getting that support.

Ms Farrell also mentioned that the services are fitting people into programmes, not fitting programmes around people. They are not differentiating programmes to suit everybody. That is probably because they have one programme and might have 18 patients. The attitude is to put everybody in that programme and even if half of them get support or something out of it, it is better than people getting nothing.

I meant to say earlier that friends and family obviously want to help. Initially, when you come home from hospital everybody is hands on deck. They are making meals and taking you to appointments. Unfortunately, for people like Ms Farrell, they cannot walk away from their family. They have a responsibility to their parents, nieces, nephews, sons and daughters. Most other people have to go back to their normal lives and they have more pressing matters to attend to. They might have their own family and their own personal worries. They have their own lives to live and they cannot be there for me or whoever to do everything I cannot do for myself. Over time, as your physical or mental needs reduce and you are able to speak up more as your speech perhaps comes back more, people see the stroke survivor as better. There is an expectation that because it has been six months or a year, you are better now. We are not better. We are not bound to be okay after a certain amount of time. The reality is that while I can hold a conversation and be here, I am exhausted. This is me done until next Monday or Tuesday. There is no getting anything out of me for the rest of the week. It does not mean that you can go back to work.

At the start, when I had to make my lunch it could have taken me nearly an hour to make a sandwich. Now, it takes me 15 minutes. That is a massive improvement. Some people might see that as great, but I am wondering, given it has taken that long to make my lunch, how long it will take me to make my dinner. You are going to put in whatever the easiest thing is to make the dinner. People do not realise that. Yes, I am able to make my lunch and my dinner, but I am exhausted after doing it. Just because I am able to write a shopping list it does not mean that when I go to the shop I will remember to bring the list with me. We all forget our shopping lists, but the majority of people will remember that they do not have this or that while we are not necessarily able to remember that type of thing. Again, as I have said repeatedly, it is the everyday normal tasks that people have been robbed of the ability to do. We need services to be put in place for us to be able to return to being able to do the mundane tasks ourselves, without being overpowered and without having the massive fatigue Mr. Macey spoke about earlier.