Julie and Corrie

Wesley (Interview 03), Julie’s son and Corrie’s brother, sustained a traumatic brain injury when he fell off a moped on holiday in Turkey.

Corrie was home alone when she received the phone call from Wesley’s friend to say Wesley (her brother) had been in an accident while on holiday in Turkey. She eventually managed to contact her mother, Julie, who was on holiday. Both got on the next available flight and went to the hospital. When they saw Wesley for the first time he looked like he was fast asleep and not like images you see on Casualty or Holby Cit. They were discouraged from touching him. They later found out this was because the nursing staff feared they would be hysterica and disturb Wesley.

Julie and Corrie both felt Wesley received excellent treatment in the private hospital in Turkey. He was transferred to the UK on a commercial plane, aided by a team of paramedics while still in a coma. On arrival, the plane was met by staff from the UK hospital who made derogatory comment about the care he might have received in Turkey, which infuriated Julie.

Wesley was in a coma for about four months. During this time Julie took on a great deal of Wesley’s care in the hospital, including transferring and rolling him in bed, doing his medication, connecting the tubes for his feeds, and clipping off his catheter to try and get his bladder to function again. Corrie returned to University, but came home every weekend to visit her brother. There was a lot of uncertainty at this stage because Wesley was moved to different hospitals several times without his family being consulted.

They worried that Wesley was not getting enough physiotherapy and his arms were contracting inwardly. Julie fought continuously to increase his physio, but was not happy with the amount he received until he went to rehabilitation hospital. Corrie explained that because of the lack of physio, Wesley has lasting nerve damage in his arm; not as a result of the acciden but of the aftercar. He has lasting problems with motor skills and sometimes has difficulty shaving or cutting his food. Julie and Corrie are sensitive about this and try not to embarrass or upset him. He also has has cognitive problems but he is good at hiding these. This, coupled with recruitment staff not properly understanding brain injury, caused difficulty for Wesley when it came to finding an appropriate job.

Julie and Corrie are very supportive of Wesley and play key roles in his life, helping him with form filling, cooking and cleaning. He relies on Corrie if he gets himself in a pickl. She tries to encourage him to be more independent because even though there are things he struggles wit, there are things he is a lot more capable of than he makes ou.

As the injured person is likely to forget a lot of their hospital experience because of their brain injury, Julie advises families to take photographs of the whole process. This gives the injured relative something tangibl to use to understand what happened to them. She says she’s really pleased she did this for Wesley. She and Corrie also would encourage relatives to question everythin; not the professionalis of the staff, but the care their relative is receiving.

When Wesley was in a coma, Julie and Corrie took photographs of him so that when he came round…

Gender Female

Julie:Photograph albums. Do a photo, do photos through the process, especially from the beginning, that they’ve got something visual to see because if you don’t have a memory of something and somebody’s telling you something it’s not the same as being able to visually look at something, and I think because they’re already coping with what’s happened to them, I’m glad we did the album. When ready, when Wesley was ready to look at it, it gave him a pictorial process I suppose.

Corrie:Yes, yeah.

Julie:Because I’d experienced previously, speaking to people, as I say I had a few youngsters with me at the time, who couldn’t remember anything and when they would ask family well what was I like and what was this?

Corrie:Describing it is very different.

Julie:It’s very different to seeing something visually. And I think it’s, it’s good for the person when they’re ready. We didn’t force him did we?

Corrie:No.

Julie:We just said to him, you know, when you’re ready to look at it you can, but I think it was definitely, I’m really pleased, I don’t think other people thought that when they first saw me clicking a camera of him lying in bed in a coma. But I knew why I wanted to do it. And I’m glad I did because I think, I think it’s helpful to the person whose, whose had the injury, because they’ve got something tangible in front of them.

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When health professionals work together with the person’s family they can achieve more.

Gender Female

Julie’ My biggest gripe I think, outside the units is that they lose sight of how to communicate with the family. And they don’t know how to do that and work together and I think you could achieve a lot more as a professional if you worked together with the family. You could do more and achieve more, because most family members, like when I was there, I was happy to do what I needed to do. And there’s a lot of family members that would say, if you show me how to do it, I can do it when you’re not here. If you showed me how to do this, I can do it myself while we’re sitting in the room and work together, and I think sometimes the professionals lose sight of that. They lose sight of the fact that they could get a lot more from the family if they were more inclusive rather than but I’m the expert, you can’t do that. You show people what to do and what they can achieve, isn’t it? And work towards that. They forget that they’re talking to human beings basically. I think.

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It is important for health professionals to remember that life-changing injuries are very…

Gender Female

Corrie:I think that’s true in a number of cases, they just seem to get very focused on what they need to achieve but sometimes they probably don’t even realise that their mannerisms and the way they’re speaking because they’ve come across this situation a hundred times before, actually the family members that are there, this is their first time and it’s a very emotional time and to, just someone’s tone of voice or tainted attitude or eye contact or communication can make a huge amount of difference in reassuring the family members, and just being honest and say look, you know, there’s not a lot else that we can do. We need to figure out a plan for going forwards, we need to make sure that his day to day cares are looked after. Don’t have any answers for you. Just having that bit of time. And it’s not, it’s not true in all cases, it’s just we came across a number of different doctors and nurses and therapists with the various hospitals Wesley was in and it was quite clear that the people that took the time to do that, reassured us an awful lot more than the people that may have given us exactly the same factual information but didn’t give that element of reassurance. And you don’t expect people to say, Don’t worry, everything’s going to be absolutely fine. You just want people to be a bit open and honest and you know, at the end of the day some of the health care professionals, they’ve got their own lives and they’ve got other things going on that are going to impact how they behave at work, but it’s keeping the focus on, I need to remember the fact that this person has got their son lying there and they’re worried sick about him. I need to make sure that I give the right message to reassure them and not to upset them any further.Which some people are fantastic at it and some people aren’t, and sometimes it’s not in people’s natures anyway [laughs].

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Initially, Julie’s son was mortified by some of the things he had to do in rehab. At that stage…

Gender Female

Julie’ They did, out, a lot of that, out, working with him on crossing the roads, much to his disgust. He was absolutely mortified that he had to go out with somebody from the hospital and be taught how to cross a road and he didn’t have the insight, as Corrie was saying into the, the neglect*. So he used to get in a right hump with that and he was most disgusted. And then they used to take him into the kitchen because obviously, you know, to learn to use a knife and things, and I’d go to the hospital and say, What did you do Buttered a slice of bread [laughs]. And he was at that stage where he was thinking here I am at 19/20 and I’ve got somebody showing me how to butter a slice of bread. So they did work very much in the kitchen environment with him. But at that time there was a lot of concerns around hot water, kettles and cookers. He didn’t use a cooker straight away that was, his nerve damage was still quite bad then. So he did do a lot of work in that area, as well as going out and being safe.

*Wesley has visual field neglect, which means his brain doesn’t register things that he was looking at.

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Julie and Corrie explain that Wesley used to have outbursts in public places. They said this was…

Gender Female

Julie:I mean it happens very rarely now, outside, but when he first came out of hospital, we would go out, something would trigger him off really quickly, couldn’t it?

Corrie:Hm.

Julie:And I’d have this abuse hurtled at me in the middle of a shopping centre, with him screaming and yelling and oh I used to want the ground to open up. Not, it wasn’t, it was strange, it wasn’t the fact that he was screaming and shouting and effing and you know, all of that. That bit I could cope with, because I would think don’t answer, just keep walking, or I would have to stand still, depending on whether he was still going to hurtle abuse as you walked, or when you stopped. It was the surrounding reactions of people, that you, you just get embarrassed.

Corrie:Yes, you weren’t embarrassed that you were being shouted at so much, as you were probably more concerned that people would think

Julie:Badly of Wesley.

Corrie:.badly of Wesley. Oh my gosh, what a horrible man, shouting and ranting and raving like that. That poor woman she, you know, he, he must be a horrible son, if they guess that relationship or whatever. And it wasn’t a case of that. It was a case of you didn’t want them to think badly of

Julie:Wesley.

Corrie:of him. Albeit if you’re looking at that snapshot, everyone’s going to immediately think isn’t he being horrible, but obviously they don’t have the standing or the understanding or know the background or the situation that that, everybody does that in different circumstances. We all make snap judgements about things that aren’t necessarily the case.

Julie:Yeah, yes, yes. I only had one reaction and it was only last year where he’d lost it with me in a shopping centre and was going garrity and berserk, and this young girl I suppose in her twenties walked past and she looked at me, she said, How disgusting. How could you let him talk to you like that? And she said, He should be ashamed of himself. And you just stand there and you think what, what am I supposed to say, and I just said, It’s okay, just ignore him. And she really obviously was, because he did let rip a bit. And I thought what do I do, I can’t stand there and say, you know, don’t worry, you know, he’s got a head injury, it’s fine. Because that wouldn’t give you any explanation either. You know, head injury could be the fact he’s got two stitches on the side of his head, you know, there’s no clarification. So you just have to stand there. And as you say, rightly so, I think its people thinking badly of him, because they don’t have the knowledge.

Corrie:At the end of the day they’re strangers. It doesn’t matter. You just have to move on.

Julie:I know but at that point in time it’s very difficult.

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Julie and Corrie put a visitor’s book in Wesley’s hospital room so they would know who visited…

Gender Female

Corrie:Friends of his from the Scouts would go and visit him in hospital weekly sometimes more often, throughout the whole time he was in there. Lots, lots of people did different things. On Christmas Day Mum and I went to the hospital and the rest of sort of Mum’s family are down on the south coast, so I think we were seeing them Boxing Day, so it was just Mum and I and Wes really on Christmas Day and when we were in the hospital my best friend turned up with her Mum and her brother whose the same age as Wes and they’re good friends as well. Just to come and give us a bit of company at the hospital on Christmas Day, which we didn’t know they were going to do. And we just think well it’s so thoughtful that they did, given that everyone has their own family Christmas, but the fact that they’d taken the time out to think oh they might like a bit of extra company was very thoughtful. There were numerous instances of where people were providing help and support, not always financially just with their time or research or

Julie:Yeah, and sometimes you know, you didn’t know, which is why a friend of mine had said have a visitors book and get people to write in it, because sometimes you get quite a surprise, you suddenly open the book and realise that somebody had been in and spent a couple of hours with him.

Corrie:Yes.

Julie:You know. On the Christmas Day, unbeknown to us until we knew, that actually a friend of mine had popped in [friend’s name], on her way, before we got there, and popped in for an hour and I think my brother had as well. And we didn’t know. Did we? And when we had the book

Corrie:Yes.

Julie:It was good really, because it gave us, if people popped in when we weren’t there, but also sometimes, especially like with [man’s name] or [ woman’s name] they would sort of give us a little novel on how he’d been doing, or they’d done something particular with him and how well he’d done and things, so that proved quite useful to us because we could sort of see who’d been in and out, or done something, isn’t it?

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