He’d had several bouts of pneumonia, and that was because of aspiration of the saliva. It wasn’t food, it was actually saliva. And because by that time he’d had a PEG and he was 100% PEG fed. So yeah, it was something that was mentioned by a Sleep Services physio, it hadn’t been mentioned by our neurologist, so we hadn’t realised tracheostomy was available for secretion management.

He was at home and two years ago, 2022 in April 17th, 16th something like that; but he had difficulty already to breathe. So he was on the non-invasive ventilator, but very often he was struggling for breath. So even if he would sit down, lie down or whatever with the ventilator sometimes he was struggling to breathe. So we was calling more often for ambulance because I didn’t know what to do. I was clearing his chest from the secretions and everything, but he was struggling more and more. Then because he was struggling more and he needed more attention let’s say with the doctors and everything, because I am not trained in those things, so I train on the job. And even with the carers that we had they were struggling too.

I suppose it was a re-hash of my thoughts around COVID when it first came along. I was having to think about how did I want to be treated if I caught it, but I thought I’d rather die sooner at home than risk ending up in hospital and isolated, unable to say goodbye to friends and family. So I guess I preferred the idea of a trachy, it seemed like a more controlled way of addressing risk than ending up having the emergency trachy, spending months in hospital where I’m probably going from one chest infection to another. I’d seen that happen to my father, and I didn’t like it.

We first came to know about it when we went to a Christmas party that was organised by the [place] Motor Neurone Disease Association branch. There we saw a gentleman who had a tracheostomy. And I went and asked and spoke to his wife. Apparently, he had done in [place], where they were living at the time, and in [place] it wasn’t a battle to get a tracheostomy for MND patients. It was sort of like a routine and it was given to people with MND.

Anyway, he has a PhD so he’s very research led as well. So he’s done a lot of research and read a lot into it, another friend also did a lot of research for us and so it’s all led by him. He decided actually that he wanted a trachy because of what he saw at this place, and also because he wants to, you know, he fights to live. He doesn’t want to die. He fights to live to see our children achieve their milestones.

I’d looked on the motor neurone website, and they do actually have a factsheet about tracheostomy, and they said it was very rare. So I think I just dismissed it, you know, like oh well it’s very rare. And it also said on the factsheet, because I’d been thinking about it, it’s usually done under emergency procedure. So somebody had gone into A&E for example and a decision was made then. So there was very little about elective tracheostomies, if that makes sense.  

So then when he go to the [Hospital] they was asking him if he want the tracheostomy. And at the beginning he was saying no I don’t want, because he was scared. Because you know like half of the people who we met they were saying yes, it’s brilliant, we don’t have any problems, we can breathe normally, you know, it’s changed our life a lot. But half of the people were saying no it’s terrible, it’s not something I am happy with, that I make that kind of decision. So we was like in between. We wasn’t sure who to listen really or what decision to make.  

My consultant said it might help if you met another MND trachy patient to talk it through and review it. This seemed a good idea, then in [place] I met this guy in July. It was interesting…

He’d had his trachy for three years, and he was very unambiguous about how positive it had been for him. Even though he’d been unlucky and picked up a bad infection in hospital, so the hospital experience had been prolonged, he felt it gave him a few more years of quality life. I came away thinking, yeah, this is not something to be afraid of.

Yeah. Well, we got really quite organised about this, you know. We had a list of questions which we’d emailed before the consultation, because two of the consultants actually used their lunchbreaks to see us. So we weren’t seen in clinic, we were seen in their spare time, so we didn’t want to waste time. And Richard’s voice at this point had faded to virtually nothing. So we typed our questions and we submitted them about a week before the meetings so they knew what we wanted to cover. And it was very relaxed. All the consultations I have to say were really relaxed. One chap was eating his lunch when he was talking to us, so we felt very sort of like it was very relaxed. There was no pressure to say yes or no; we were just fact-gathering.

I had been on NIV nasal mask for two and a half years prior to that, and I had a number of discussions about it with both my neurologist and the respiratory consultant, about if I would want a tracheostomy if the situation arose. So I would say I was pretty well informed, even though it happened as an emergency.  

I think they show us how exactly it looks. They take it out from the package. They said how much inside what they’re going to do and everything. That he’s going to go to sleep, he’s not going to be awake or something or that he’s not going to feel any pain. I think that was more for me, like calming thing. I’m sure for him, he was worried that he’s not going to be able to wake up or something. But they said to him, for us the most important thing is not to be an emergency. I think elective surgery like this I think is better because you are more calm. It’s not a lot of people around you and you don’t know what’s going on, they’re explaining to you slowly, slowly, you’re getting used to the people. You have time to talk to the specialist even in the hospital before the operation…

I think both consultants I discussed it with were pretty negative about it to be honest, not about the tracheostomy itself, but the issues about carers. I think both of them had been involved in a previous case where they’d had a real difficulty getting a care package together. So that was basically, the message they were giving me was stick with the NIV unless absolutely there’s no option.

He said that it was a very serious procedure. It could lead to death during the procedure itself. It would place an unfair burden on me as a carer, so I would stop becoming Richard’s wife and I would become his carer. It would be very difficult to put a care team together to help out with the tracheostomy. He also, and this has been sort of a feature of our neurologist, right from the beginning he’s always given the underlying message that motor neurone is progressive and you let nature take its course. And so I think he thought tracheostomy was a way, I mean he actually did say at one point, you’re going to have to make very difficult end of life decisions with a tracheostomy, and you may be extending Richard’s life at a point when Richard doesn’t want his life to be extended.

He said to me we don’t normally recommend tracheostomy for MND patients and when we do look at it we have to think about things like people’s marital status and income because, well the implication was that life with tracheostomy is not easy and you will need the support of a spouse and you will need enough private funds for, I don’t even know what…

I can see that life would be even more challenging if you didn’t have supportive relatives around you but that’s not the way that things work in this country.

I don’t think it was something that was offered to us. It was something that we brought up as in, well, if this, the trajectory, this illness gets worse, Brian still believes he’s got a quality of life. And he did have a quality of life and he still does have a quality of life. He was aware that, you know, having this tracheostomy placed then may result in him losing his voice, not being able to eat, you know, orally. So we knew that this could happen and he still wanted to go for that. The neurologist, his consulting neurologist tried to talk us out of it.  I think he had previously bad experiences with people.

So most of the time we saw the nurses when we did the NIV, and so we requested, after we met this gentleman who had this done in [place], we requested to speak to the consultant about a trachy. So we spoke to the respiratory consultant there and that’s where we had these issues with electives and emergencies… It was not very useful because she said that in this country they didn’t do elective trachy on MND patients and so I said, we asked, does that mean that we would have to have it as emergency, and she said yes…

I think we shouldn’t need to get to that stage where we’re in ICU, things should have been done before for planning, which we did, we went to see a consultant, so we’d already paved our way. But the hospital said no, you have to come in as an emergency.

I was prepared to do anything to get my voice back and to be able to eat again. But I think that my discussions around the tracheostomy before the hospital admission, it would have been nice to have had a greater sense of what the actual process was going to be like, focussing on what’s it going to be like living with the trachy, carers etcetera, but we never discussed this is how it actually is, if you’ve got a tracheostomy, this is the process you’re going to have to go through.

I don’t know if I said this, but my husband does feel that he wasn’t given good information about the pros and cons of tracheostomy before he had one. Now he was in a situation where if he chose not to have one then that would have been the end of his life. But even so I think he feels that it would have been easier to bear if he’d had a better sense of what to expect and that’s one of his big things.

I guess I feel they gave me their best advice, and I accept there’s always a risk to any operation. But I feel I wish, on the other hand I do wonder whether my MND and ventilation consultant, between them perhaps hadn’t had quite as much experience of doing trachies with MND patients and weren’t as fully aware of the risks as they could have been. It’s difficult to say that to a consultant face to face. You want to stay on the right side of them.  

I would like there to be, I’d more than like, I think it should be, not offered but people should be told about the potential, really told what it’s like to live with it as far as possible, so they can make a very informed choice. And I think probably now there seems to be younger people diagnosed, that may be that it was the case before, but it wasn’t diagnosed, who knows, and I think that kind of age group of people with children or want to see their grandchildren might opt for that. But I think it’s important that that choice is made available together with an understanding of what it really means because it’s not an easy choice and you have to adjust.

I think the knowledge, not to discourage people, give them all the information, explain to them, don’t straightaway say ‘No I don’t think it’s a good decision’ and that’s it, just for the people to explain to other ones what exactly does it mean to have a tracheostomy.

I think early broadcasting or education pieces on the use of trachy for MND patients of this nature, or of any nature, it’s an absolute must, because at some point, regardless of whether you know about it or not, you have to face it.