Burn Injuries

They were very painful I think but the clinical staff – as I’ve said before – were so lovely, really, really lovely. They would deal with, they’re talking to me to keep me, keep my mind occupied elsewhere, dosing me up with painkillers, once again through multiple routes. And just the, you know, the kindness of clinical staff can really have an effect on your pain levels, I think. If they weren’t showing me any emotion at all it would have hurt a lot more, I think. But they were showing me such kindness that, yeah, that definitely helped with the pain.

You valued their support in helping with your pain management, I guess?

Definitely, definitely. And also, in between the changes I was lying in the bed and, I think I could call any time the pain was reaching a thing and they would come in and either turn up something. Once again, I’ve not quite, don’t quite remember the details but they were able to regulate my pain of my burn injuries.

Well, apart from the wonderful food you mean? The food was amazing! When people say that food in hospitals is terrible – absolutely amazing. They couldn't feed you enough, you know. They were always trying to feed you up, you know, and saying you need this, you need this, and that. Yeah, every member of staff, really supportive, really supportive. Not one was awful and they were always- And also another thing they had which I thought was a great idea, they had... [Mobile phone tone] Excuse me, sorry-  So they had a board, a whiteboard and they asked me when I was in, you know, as soon as I arrived, “What do you like Marilyn, what do you like doing? what do you-, what's your thoughts and things?”. I said “Oh, I like singing” you know, that kind of thing. And he wrote that on the board, "Marilyn likes singing. Marilyn likes this. Marilyn likes that." And I thought- "What kind of food do you like, Marilyn?" And, you know, whatever, you wrote that, all that up in this board. I just thought it was amazing, so that when someone came in to chat to you, they could look at the board and say “Oh," you know, "Marilyn, you like curries”, you know, that kind of thing. I thought that was a super idea, a great idea.

And I think when you’ve got, like, a long injury, like a lifelong injury, like a burn, it never goes away, you need constant treatment, so you become very close to these people, and then they do, and it sounds like a real cliché but they do become your family. And there’s too many times, I couldn’t even point them out or remember. At one point one of the nurses, who remains, you know, working in the same place, she wrote me a note on a bit of, nurses do this, on a bit of tissue paper. She had wrote me a note to say have a lovely weekend, that she was going home to wherever she was from and that she would see us on Monday, and I kept that bit of tissue paper all folded up, and I found it quite recently, like nearly eight years later, I found it all folded up, because that small little act of somebody scribbling a note on a bit of, like, tissue paper meant so much at that time which, again, sounds crazy, but it’s just those little things, and to know somebody cares and somebody’s watching out for you is, you know, it’s huge.

And you think that was important when you were at possibly, probably the lowest point you’ve ever been at?

Yeah, and I think I remember that was a weekend, so it was a Friday, it was a Friday evening, and weekends are horrifically lonely in a hospital anyway, but just to know that somebody is thinking of you or somebody, you know, is wishing you, that you have, as good a weekend as possible while your child is, you know, lying very, very ill in an intensive care bed. But just those little things mean so much when you, like you say, you are at your lowest and you’re lonely and scared and frightened and you’ve got nobody else around, a note on a bit of tissue paper meant the world at that time.

I had a lot of sympathy from every hospital person that I was in contact with, and I think they tried to make me smile and laugh more than they would someone older. So, I felt very supported by all of the nurses and the anaesthetist, everyone that I was, like, in contact with. Obviously, in the first hospital, I couldn't speak to them, so that was difficult. But I think it didn't seem so bad because everything was happening in such a whirlwind.

They just did everything they could to be helpful. They were really lovely, and they sort of, like, joke around like when I was obviously struggling with my eyes open, the nurse that would come in and try and open them up would be sort of like spent a lot of time like trying to guess my eye colour and things like that, I guess to distract me. And they helped to coordinate like getting our things out of the flat, and they allowed me to have my teddy, which I was very excited about. So, I was quite a chuffed little child as soon as I had my teddy back. So just things like that. They just, yeah, did what they could to help.

I have to say, from the receptionist to the nurses, to the nurse that Niamh speaking of, like a children’s play person she was, to the doctor, I was mega-impressed. I mean, we had to get a train to the children’s hospital, which is like a half hour trip. So, when we went back, I think we were 10 minutes late for the first appointment and I explained, you know, “Terribly sorry, the train and then the bus” blah, blah, blah. So, when we had to go back, she made our appointment at around the same time so that we could get there. Yeah, I thought they were all amazing people. Amazing, amazing people. And you are immediately made to feel comfortable and it’s, yeah, I was super impressed, super impressed with everybody, to be honest with you.

Did it make the experience easier, with that positive environment?

Definitely, definitely. It’s the first time that, in the lives of all three of my children, that we’ve ended up at a children’s hospital and our local hospital, which is about a half hour away from here, that’s a big hospital. So, when you go in and get told by them that you’ve got to go to the Children’s Burn Unit, you think 'Oh Lord!' and that, yeah, I mean I wasn’t like 'Oh my God!' or anything but it’s just like 'Mm, I thought this wasn’t great...' You know, 'I was right to take her, I was right to be nervous of this burn'. But they just made the whole process, just comfortable. It was superb, I have to say it was superb. And actually, when you, we got off at the train station and they actually run a free bus every sort of 15 minutes or something, I think it is to run you up there. And, you know, even down to that, the bus driver was lovely. Everybody was just lovely, because you’re certainly, when you’re going to a children’s hospital, the last place any parent wants to be is in a children’s hospital with their child. And everybody just had empathy and was kind and considerate and smiley and yeah, amazing, amazing people.

So, when they were telling me that she would lose all her fingers, I couldn’t understand but why? Like, they’re there so why, you know? So, I suppose, you’re a bit naïve and I’m thinking, you know, all these things. I remember somebody telling me, a surgeon, that she’d be able to play the piano, she wasn’t going to lose as much of her fingers, and he thought she’d be able to play the piano, and I was like “Oh my God, thank God, she can play the piano. That’s amazing!”. And then, the following day, another surgeon came in and said, “You know, I know you’ve been told this, but she’ll never be able to play a piano.” And I burst out crying in, like, despair of my child wouldn’t be-, my six-month old baby won’t be able to play a piano! It’s, it all sounded so, I was so disappointed and a couple of hours later me and my husband were walking down the corridor and I burst out laughing and he said, “What are you laughing at?” and I said, “I can’t believe that we’re crying that she won’t be able to play the piano. Like, there’s no-one in our family that can play any musical instrument”. So, I don’t know why it had become so important at that time that, it was like somebody giving me a glimmer of hope that she wasn’t going to lose all her fingers and then, the next day you’re told “Oh, actually she won’t be able to play the piano anymore” that she could never play to begin with. So, I suppose my understanding of burn injury. I knew it was bad but nothing quite like what we faced. And I suppose I didn’t have an appreciation on the kind of lifelong effects of a burn injury.

Yeah, at some points they did speak to me like I was a grown-up, but in other points no, they spoke to me like a child. So, when I had just come in, they were speaking... well, what, from what I could actually hear, they were speaking to me like I, in very, very simple words that I knew what was going on but didn’t have to actually do any brain processing power to actually know what was going on. Whilst later on, they did use more complicated words but, but yeah.

To be fair, they were actually very good and slotted us in on that first day. She wasn’t "Oh, of course, let me help you", but she did get the job done. But it was more then, the nurse herself, that was a bit like "Oh well, we don’t have any appointments." And I’m thinking ‘Well, I’m not sure what you want me to do...’ You know, 'for a 10-minute dressing change I don’t really want to travel 30 miles on a train'. So, yeah.

But I think that the breakdown in the communication there, even a letter from them [the burns specialist] to say “Our advice is this. We’ve provided …” and I’m almost sure in saying that when I gave the nurse the pack that I’d been given from the hospital and said about these dressings, and she was like “Oh right, ok” and was sort of reading about them herself. So, not necessarily come across them. But, yeah, it was the blasé attitude “Well, we don’t have the appointments.” “Well, it looks to me like it’s healing fine.” And I’m like 'Well, ok', not, you know, 'I don’t know what else to say here', sort of thing. So, a letter from them to the GP’s surgery saying like “Within reason, we insist on this treatment plan for the next fortnight until we see this patient again", or, a phone call saying “We are Dr so and so. Our recommendation is…” would be easier than a mum going in there worried about her child’s hand saying, “Yes, but”. So yeah, that, I think, would be something that would be better if it was done that way. An email, an anything, you know, just an anything to, I suppose, clarify what the worried parent is then going in and asking for.