Mr. Joe Grogan:

I will give a brief history of Shane and our life for the past 12 years. Shane suffered a severe acquired brain injury 12 years ago when he was assaulted and attacked on his way home after a night out. He was brought to University Hospital Galway, UHG, and subsequently into Beaumont Hospital where he spent six weeks getting treatment. He was subsequently transferred back to UHG where he spent a further six months. He was transferred from there to the National Rehabilitation Hospital, NRH, in Dún Laoghaire for three months of rehabilitation. Like Mr. Schäler the first question we were asked when we went in the door of the NRH was, "What nursing home is he going to?" Unfortunately, given where we live we could not bring Shane home but we had planned to build a house and get him home. We were told that maybe we should take the other line and maybe the nursing home was the best avenue. After the three months, it was back to hospital and, subsequently, he was removed to a nursing home in Tuam. For the past 12 years, Shane's life has been in a nursing home. It has been very difficult for us as a family. My wife Joan spends possibly six to eight hours of the day with him. Even though he is being cared for in the nursing home, Joan is with him all the time. I go down in the evening when I can after work.

Going back to what happened to Pádraig, some years ago when Covid hit the nursing home, Shane's oxygen levels dropped so severely he was rushed to hospital. We followed them in and Joan went in with him to the accident and emergency department. She was allowed stay with him and stayed in a room with him for the week just so he would have someone with him who was not a stranger to him. It was not until three weeks afterwards that Joan sat down with me and said, "I have to tell you something and don't get mad". I asked, "What is it, love?". She said that when she went into the accident and emergency department, she was brought into a room and sat down and told that if Shane's condition did not improve, there would be no intervention and they would make him comfortable. He was a 31-year-old man. What did they mean by "make him comfortable"? I would not leave it at that. I contacted the hospital and made a complaint. I got a letter back, which I have here. Basically, it was the HSE's directive that with Shane's pre-existing condition, which was a brain injury and there was nothing else wrong with him physically, they would let him die if things did not improve. Thankfully, things did improve and Shane is still with us.

It is hard going into a nursing home to see him. As Deputy Ellis said, it is no place for a 30-year-old or an 18-year-old. Shane has been there since he was 22 or 23. The care is okay. It is basic care but we have to pay for our own therapists to come in. We pay for our own rehab physiotherapist, occupational therapist and music therapy. Anyone we get in we have to pay for. We are lucky that we set up a charitable trust ten or 12 years ago and we were able to fund it from those funds. There are simple things, however. For example, Shane has had a problem with his teeth for five years and it is only next week we are getting him in. We have to bring him to Dublin to the dental clinic. We have to hire a private ambulance to get him there for an assessment. If anyone had a pain in their tooth five years ago, they would get it seen to within a week.

It is five years, and we have no guarantee as to when Shane will get treated. Our life is like that.

It was between five and seven years ago that Mr. Schäler contacted me, and we met and discussed An Saol. It is a fantastic organisation. Shane unfortunately has not been able to get to Dublin yet. In the meantime, I successfully found a unit in Tuam that will be used as a satellite centre for An Saol. It is HSE run and newly opened. I was in contact with the staff about two months ago and they were delighted to facilitate us. Again, it is all about getting staff and people to work with us. Shane needs this. We bring him out as much as we can. We make life as normal for him as we can. However, the Government and everyone else need to come and see what is needed. Shane is a functioning adult. He has two fantastic nephews. He has a sister and a family unit around him. We go in to him every day and play his music and he responds at times. He has minimal consciousness, so he is on the severe end, but other than that he is still our son. No one has the right to say to us that he should not be here with us. It is only decency. It is only something that any member of the committee would ask for a sick child. That is what we are looking for.

We hope that when Mr. Schäler's Teach An Saol project is up and running we will be able to bring Shane up there. He will be able to stay up there and have treatments for a month. We cannot go up and down in a day or two days. There is no place in Dublin that will cater for Shane with an overnight stay because of his condition. With Teach An Saol that future is unbelievable, and I again congratulate Mr. Schäler on what he has done and achieved so far. We can get people from all over the country to go up and find this other way out. Shane's three-month stay in Dún Laoghaire was a basic three months. They did little for him other than what they had to do and sent us home.

We do not have a consultant. There is no one in charge of Shane's medical issues at the moment. It is all up to my wife, Joan, as regards what is wrong if Shane is feeling off form. She has to guess. She is at a stage now where she knows what it might be. If Shane has to go into a hospital, he has to go into the emergency department and lie on a trolley or in a bed. He is 6 ft 4 in. The bed is usually too short for him. We have to go through all this. My wife spends all the time in hospital with him. She sits in a chair with him because he has to go through so many tests. Then, after a week, they send him back to the nursing home with an antibiotic or something. That is our life, and it is difficult. It is a short synopsis of what we have been through for 12 years. There is light at the end of the tunnel, and it is Teach An Saol and the satellite centres, which can be developed right across the country with a bit of help. A bit of money is needed if course. Mr. Schäler said it is about securing the finance for next year, and not to be worrying about it and wondering if we are running out of funds to keep what we have in place when we are coming into October or November. We need it to be there and maybe have a bit extra for the Christmas party at the end of the year, so we are not always panicking about finance. I am self-employed. Business is tough, but it is nice to know you have enough there to get you through the year and that your family will be looked after.