Unfortunately, it just got to the point where the only time we felt that they could do something about it or start that ball rolling was when he got to that collapse point. And then obviously went into intensive care within the 24 hours and he pulled back enough for them to transport him down to the critical care unit in [CITY], where the neurology team are. And I cannot begin to express how amazing they were because he didn’t have a choice on the TV. It just had to happen. There was no other choice.

So he said, well if we invasively ventilate your husband there is a chance, a high chance in his opinion at that point, there is a high chance we will never get him off invasive ventilation. I said well what’s the alternative? And he said well there is no alternative. And I said well we’ll do it then, you know, do it.

And at that point the consultant came down from ITU and he leaned forward and he said Mrs [name] you do realise that your husband’s very ill. And at that point my daughter said “you hear what he’s saying mum”. And I said I’m fully aware of what he’s saying, but he wants to live and he’s as much right as anyone else. And at that point the consultant nodded, walked out of the room and he came in two minutes later and said we have a bed, for now.

And this junior doctor said to me, he was trying to ask me whether S had a DNR, but I had no idea what he was talking about. He was like, well have you had any conversations about S’s wishes. I was like, what are you talking about? Eventually I realised he was trying to say, you know, do you want us to try to save your husband or let him die? So I was really upset by this question, seriously upset. I was like get in there and try and do everything, of course, he’s a father, he’s a husband, his son is six. You get in there and you do everything that you can to save his life. So he was like OK, sorry about that.

Then the next morning the ward woke up, everybody woke up and then he had another respiratory arrest. This was during working hours, it was Friday morning and he had a respiratory arrest. The team came and everybody worked on him, and because I am a nurse I know how, I’ve been in a situation where I hear a doctor saying, all right guys, we have to give up now, we’ve worked on him long enough. I didn’t want to hear that and I know that KT would not want to hear that, so therefore I stood in the middle of the ward, there were outpatients, there were inpatients, and I started screaming, shouting and crying and saying, don’t let him die, he wants to live, he needs a tracheostomy, he wants a tracheostomy, he requested a tracheostomy, don’t let him die. There was a lot of tears and crying and shouting because I wanted everybody to hear that. By that time, they had moved me out of the room, so I had to do it in the middle of the ward you see because he was in a side room, and so there was this big second rush of nurses and people coming to me and saying, stop, stop, do you want to upset the rest of the patients? I said, I really want to do what he wants to do, which is he wants a trachy, I’m just telling you don’t let him die. So they listened and then they carried on sorting him out and then got him around and then moved him up to ICU that night. It was really traumatic, honestly, I just don’t want people to go through that, why did he have to? There is somewhere in thick wads of notes that says we have discussed trachy, we would like a trachy please.

Stephen was then in the respiratory unit for the best part of five or six months, not because he wasn’t fit for discharge, he was, but it was around training the staff. It was an agency support team we had at the time, training them to be able to change the trachies. It took a long time to get to that point.

The time to get home from the hospital yes, is quite complicated and difficult when he tried to leave the hospital. Mostly it’s because of recruitment, preparing. Apart from that, my observation is for our home, preparing for his needs, what he needs at home as well. But luckily because Phillip also does a lot of research and he knows what he needs, so he prepared most of the room and equipment for his own, to prepare for that. That’s why when they started the recruitment completely when he got home, he moved on very quickly.

So, I was in the hospital for three and a half months all together. I was not well for the first, I would say six weeks of that, and then I had a cuffed tracheostomy until the end of February, and then it got uncuffed. So really I was pretty much ready for home from the end of February until the end of April, but it took that time to get a care package in place.  

I think it was more about being shown what to do and I was shown what to do in the hospital in ICU while I was there and he was in there six months because they have to get it right. And we had lots of little, one of the consultants would take him downstairs, we would go down with one wheelchair, one behind us with oxygen, one nurse, one consultant and myself and another carer and we would take him downstairs, take him outside, get some fresh air, bring him back in. And when they were confident the nurse would come with us and we would go down into the coffee shop and have a coffee and then we would bring him back.

I was hoping that after tracheostomy he would decide to come home. But because, we have two-bedroom flat and even though for disabled people and everything, our house is quite small, with two kids and having two carers non-stop two carers around the house, and it was a very big struggle for us at the beginning when my husband got sick and we needed two carers, or even one carer, it didn’t feel like home. So the kids was closing themselves in their own room just to be away from extra people. And I was hoping that after the tracheostomy when he’s going to recover and everything he would wish to come home. But he says no, he could see how much struggle especially for the kids it was to have non-stop, you know, most of the days, every day it was new people. It wasn’t like regular ones; it was most of the time new people. He said I don’t want to put the kids through that again for them not to feel like home. So he said he doesn’t want to come back home.

It’s not that my mam didn’t want to take him home; she just physically wasn’t capable. And because of that and the management of this, by the time they tried to arrange the training of supportive care personnel who could manage this in a care home, he died. And I think he knew, he actually wrote down, I don’t want to move out of the hospital. He’d come to rely on, depend upon, come to know the nursing team in ICU that he didn’t want to change into new hands, and that’s the key point is when you’ve got an MND patient who becomes so heavily embedded with a team of carers, and the risk of transferring that to a brand new team who are only just learning how to use a trachy, change a trachy, manage it, the risk of him and him mentally coping with that change, at this late stage in the game, which is not acceptable.