Burn Injuries

I’m quite a curious sort of person, so I will ask a lot of stuff. How the doctors actually got out of my room the next morning without me asking and what's what with this and what's going on with that and how, you know, next stage is. And so yeah, I’m a naturally curious person, so I would want to know everything that's going on. It's like, for example, I had to wait. I think it was a week before I went down to theatre for my skin grafts, and I wanted to know ‘why did I have to wait so long?’ And the doctors are brilliant. They explained it all.

It's like things like your notes and stuff, you know, always asking, you know, the temperature gain, temperature and the blood pressure and stuff like that, why is this happening? Why is that happening? I’m not constantly why, why, why, child seriously because it's just one of those things that I really think you need to understand how your body works. If you understand how your body works and what the med professionals are doing to help you get better, it puts everything in a picture then, and it gives you that journey, it gives you that, you can see where you're going rather than being in like in a fog and not knowing or not understanding what's going on. So, I think the more you understand about the process, the healing process, what the medics are doing, what the nurses are doing, why they're doing it helps you to understand the process. It gets you healed better. And maybe that's helped with my mental attitude as well was because I felt I had a degree of control over and a degree of decision making. Then I felt that helped me as well.

And I do remember it being a shock that he told me I needed surgery, and asking him lots of questions, which he was brilliant at answering, I’ve always thought-, and I think he does a lot of surgery on children, he’s really good at explaining in simple terms what he’s going to do, what the results might be and all of that, yeah.

In fact, an accident I had a few weeks ago, I was just bamboozled at what on earth they were telling me, didn’t really understand it. So, yes, I really value clear, yeah, plain speaking and answering questions really well and honestly. Yeah, really, really value that.

The whole team at that hospital, maybe led by him, have been always absolutely brilliant at explaining what on earth is going on in very simple language. And, you know, even using kind of sketches and things if a question that I ask can’t be answered in words to show me even more clearly what’s going to happen. So, no, really, really value that.

But I think the time I found it the most stressful was when I was 16 and I transitioned from the children’s hospital to the adult’s hospital and I went to an appointment and the doctor spoke to ME, and I was like “Why are you talking to me? I’ve got no clue what you’re on about.” Because actually, as much as our surgeons were great, they didn’t talk to me first, they talked to my parents and my parents would be like “No, can you include her in the conversation?” You know, and so I went into this room thinking “Oh” you know “I’ll go in’ you know” “I’ll take my top off so they can see my back and my chest and look at my neck and everything. I’ll just nod along to what they’re saying” “my parents’ll you know, agree to something, I’ll agree because I know they know what’s best and then, when we leave the room, I’ll ask them to explain in the care what he was on about.” And actually, I got there, and my mum stopped talking and I was like “Why are you not talking? What are you not having this conversation with him?” and I suddenly was like “Oh! This is up to ME! Like, I need to start understanding more why we’re doing things instead of being passive and just letting people do what they want to me.” And I think that was a big learning curve, was I suddenly realised how little I knew about my own body.

I want them to talk me through what they’re doing and how they’re doing it. And for me, that’s always worked with my anxiety, in that they’re talking me through what’s happening at each stage and, actually, I’m in control. So, if I say ‘Actually, can you just pause a minute and explain’, or ‘Is this going to hurt?’ that’s the big thing, ‘Is this going to hurt? You need to be honest.’ My mum was the first one saying “Yeah it will. Yeah, it will but it will only last for this amount of time and I’m here with you whilst it happens.”

I never felt like they were just signing-off on surgery and I didn’t have any say or I didn’t know what was going on, which I think’s so important, because I think a lot of the fear around young people having surgery in hospital is that they just don’t understand what’s going on and actually surgeons are so good at talking to parents and explaining to them, and sometimes they child’s forgotten about a little bit and they’re kind of just expected to go along with it, and actually, you know, who wants to have surgery if you don’t know what the point of it is. So, I think that’s definitely where we did things right as a family is that we were always very open. And I was always allowed to say “No, I don’t want that.” That didn’t mean that was the answer, but I was always allowed to be like “Mm, not really feeling this” and we’d look at it again and see if there were other ways to do things.

Niamh: I think I would have rather them told me what they were going to do so I know what was coming.

Yeah, was it a bit unexpected then?

Niamh: Yeah.

Mum: Now, stepping in as her mum … I’m glad they done it the way they done it because I think then it might have been ‘No, you’re not touching my hand, you’re not touching …’ and then it becomes a … quite a traumatic experience going into it. Whereas, the way it was done, yes, she was annoyed, yes it hurt, but it was done in seconds.

And I had a lot of literature as well dropped in for me to read because I’m just too curious. And I said if I get away without having the back of my hands grafted, if I could let them heal naturally, would that be a possibility? And he said “well, normally, we would graft them”. But I said, look, no. “If you can help me understand how I could help myself to get them healed better on my own at this point”, and when it actually came round the day of the skin grafting, he looked at my hands before I went down and said “You know what? I think we're going to let these heal on their own”. He said, “You're doing really, really well”. So that was a little bit of treatment that I really requested, but only after I’ve read a lot of information. I’m not sure how other people, whether they would naturally give out the information, or whether people don't want to know or don't ask, but I always found by asking and actually understanding what happened with and how burns heal. It helped me make a lot of decisions to help myself for sure.

I wanted to help myself as the master as much as I could. But I think you need to make an informed choice, an educated, informed choice as well. And that's why I was really glad I had time. Like, they said they couldn't do any grafting till six days because they wanted the underlying blood tissue to be starting to heal. So, the blood vessels were growing in, so they'd have a better chance of the grafts working. Then, if they'd done them too soon, the chances are they may have died. But having that time to think about things and do a bit of research myself, yeah, really helped.

Were there any other kind of informed choices that you made in regards to your treatment?

I asked the dressings to become less and less bulky if possible, and that was fine. And also, the hand slings, the ones where they put my hands up as well, I asked what could I do to get rid of those very quickly because those one make your arms ache, and they were gone within a couple of days.

I’ve learned an awful lot about looking after skin after a burn. I’ve learnt an awful lot about myself and my resilience, but I’ve also learned a lot, and I have maximum respect for the healthcare professionals out there that helped me through this. They were the best people in the world, and that's why I’m in a really good position, I think mentally as well as physically after the burns because they helped me through, and they, I always had an informed choice on my care as well, but that wasn't just them spoon-feeding me. That was me asking them what do I need to do too. It's not just the healthcare professionals’ job. It's your job as well to get better, and you need to do everything they advise you to do.

I’m aware of information out there and perhaps I’ve just not, for instance, before I got my laser treatment, I went on Dan’s Fund where they had a Burns UK website and just looked up some of the information. They had stories but, again, they’re actually stories about people who had done it, so I feel that I’m probably looking for that sort of information as well, as opposed to factual information on “This is laser treatment, this will do this, this, this.” But I want to know someone else’s story, you know, why they got it done and what it done for them and for me to see if that is a similar to me.