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Series 1: Episode 2

Journey in the hospital of a brain injury survivor

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In this episode, we'll be talking more about the journey of being in a hospital, how as an injured person, it felt like being in hospital and also tips for friends and family members who might have a loved one in hospital after a brain injury.


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Information and other content provided in this Podcast should not be taken as providing medical advice or recommendations. Please always consult your doctor or treating team for medical advice.

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Ashwini 00:00:24 - 00:01:06

In this episode, we'll be talking more about the journey of being in hospital, how as an injured person, it felt like being in hospital and also tips for friends and family members who might have a loved one in hospital after a brain injury. So looking first of all at the typical journey, we talked about when you had your accident Brooke and the scene at the time, it was absolute chaos, and you had the ambulance and lots of people around, and then you were taken to A&E, is that right?

Brooke 00:01:06 - 00:02:03

I was taken initially to MRI – Manchester Royal Infirmary - which was just around the corner from where it happened. They waited for some of my family members, for my mum to come across from Scarborough. We were then told that a bad had become available in Hope hospital, which has now changed its name to Salford Royal Hospital, and that was quite a big thing because they're one of the best neuro units in the area, if not the country.

My mum didn't want me to be moved because I was in such a state. She'd apparently come in and my head was massively swollen and I hadn't been cleaned up when she saw me. They moved me up to Hope hospital and that's where I was in ICU - intensive care unit.

Ashwini 00:02:03 - 00:02:40

Yes, and the reason you would have been moved to Salford Royal, as it is now, is that it's a major trauma centre, so it's one of a few designated major trauma centres in the country that are specially equipped to deal with patients with severe traumatic brain injuries.

So you said that you were then in intensive care. Have your family talked to you about the sort of treatment you were having whilst you were in intensive care and the clinical team around you who was involved?

Brooke 00:02:40 - 00:02:57

They mentioned that I had physio when I was in there. They used to, and it was obviously quite traumatic for my mum to see it, but they used to sit me up and move me about, so I didn't get bed sores and stuff like that. I'm not too sure beyond that.

Ashwini 00:02:57 - 00:03:01

And I dare say, even if you were conscious, you won't really have much recollection of it.

Brooke 00:03:01 - 00:03:22

They used to do this thing called obs, which is where they'd observe you. They would see if you reacted to pain, and they used to cause pain to me. My mum said it used to be quite horrible and they'd squeezed my nose and stuff like that.

Ashwini 00:03:22 - 00:03:23

To test your responses.

Brooke 00:03:23 - 00:03:25

Yeah, exactly, yeah.

Ashwini 00:03:25 - 00:03:48

Yeah, and it's important as you say, with physiotherapy to keep somebody moving, because if they're going to be in a bed for a long period of time, you've mentioned bedsores, but there are also things like making sure that somebody doesn't get a chest infection and making sure that they don't have mucus sitting on their lungs for too long. So it's important to keep the patient moving.

Brooke 00:03:48 - 00:03:58

I had a tracheotomy, actually. I've still got a scar, which is why I like to wear a V neck T-shirt in the summer to show it off.

Ashwini 00:03:58 - 00:04:03

Show your war wounds!

Brooke 00:04:03 - 00:04:35

Yeah, exactly! Because that's also one of the things about brain injury - somebody with a brain injury can essentially look completely normal. This massive thing happened to me that, you know, put me in a coma for 16 days and put me in hospital for six months, and I've essentially spent the rest of the last 15 years recovering and will do probably the rest of my life. I don't really have many physical scars to show from it, so you know, that's one thing I have got. My mum said they used to clear that and the pipes, and it used to be quite traumatic for her to listen to.

Ashwini 00:04:35 - 00:04:43

Yes, I can imagine.

And after intensive care, I believe you went to a high dependency unit.

Brooke 00:04:43 - 00:04:56

Yeah, it was a ward in Salford Royal called HDU – I don't know if that's the standard name throughout all hospitals, but it sounds like it is, a high dependency unit.

Ashwini 00:04:56 - 00:04:59

And do you know why you were moved there?

Brooke 00:04:59 - 00:05:21

I don't know why, but maybe because I'd woken up. I'm not too sure of my facts on that, but I'm guessing it's because I'd woken up, so they move you to the next stage on. It then makes a bed available for someone else because I was apparently very lucky to get the bed in that hospital, and yeah, you've got to give it up for someone else.

Ashwini 00:05:21 - 00:05:24

And did you move on to a rehab ward after that?

Brooke 00:05:24 - 00:05:58

So I moved to another ward, in Salford Royal, I think it was called B8, but I supposed that's specific to Salford Royal. And then when my memory picks up is on another ward called C2, which I believe in Salford Royal is pretty much the standard route, and that's the neuro recovery ward, and that's the last place on the journey in Hope, or Salford Royal, before you move down.

Ashwini 00:05:58 - 00:05:58

And you mentioned before about physiotherapy. Did you have neuropsychology input or occupational therapy?

Brooke 00:05:58 - 00:07:04

So I had neuropsychology, who I still see now, a guy called Russell Sheldrick. He wouldn't see me until I was out of post-traumatic amnesia because I guess it wouldn't have made much difference because as soon as I'd had it, I'd have forgotten it again.

I used to work in a bar at the time; I was a young student and had a great social life, loads of friends. My mum said Russel would you sit in the corner ward, especially when all my friends came in and my mum was concerned that he was getting quite upset with the number of people traipsing in and out of the hospital. But he said no, it was a really good thing because stimulation from the initial stages is really good.

Ashwini 00:07:04 - 00:07:16

OK, well we'll talk about that in a little while.

So, you had your neuropsychology. Did you have any other therapies that you can remember?

Brooke 00:07:16 - 00:07:39

I remember having physio, but one of the reasons I came out so well was I was quite physically fit and strong at the time; I was a young lad, I worked behind a bar, I was trying to impress people, that's the only reason behind that! And one of the things I used to do in the gym beforehand, I used to do, you know what dips are?

Ashwini 00:07:39 - 00:07:39

Oh yes, tricep dips and things.

Brooke 00:07:39 - 00:08:37

Yeah, so in the little gym, there were some ballet balance bars and I tried to do some tricep dips on it and I just off onto the floor! So you don't realise how much your strength has disappeared. I remember, getting weighed and my weight had gone right down. I was trying to become as big as possible beforehand, and I was maybe 12 stone, something like that, and then I remember, it was in kilograms, so I didn't massively understand kilograms, but I remember having this number, and it equated to 7 stone 9. I went really, really skinny. I mean, I didn't have much to lift during the tricep dip, but the size of my muscles must have just almost disappeared from not moving for so long.

Ashwini 00:08:37 - 00:08:40

Yeah, you'd lost muscle tone.

Brooke 00:08:40 - 00:08:41

Yeah, yeah.

Ashwini 00:08:41 - 00:09:07

Which is again why it's important to have that ongoing physiotherapy to try and keep some muscle tone going.

Talking a bit more about whilst you were in hospital and this idea of a very fake environment, tell me what you recall of that and how distorted your reality was.

Brooke 00:09:07 - 00:10:03

Well, I think one thing that happens with brain injuries is that your initial healing just goes really well, you know, you're doing fantastically at first, and you think that at this rate, I'm going to be back out in the pubs in a couple of months; well that was my main life, I was a student!

You just think that you're doing really well, and obviously, everybody is very encouraging towards you, 'you're doing great, you're doing really well.' No one's going to say you're not doing that well. So you've got this in your head you're doing fantastic; you're way ahead of the curve.

When you're in the hospital ward, it's a fake environment. You're told when to get up, when to rest, when to eat, and it's all very structured without you actually knowing about it. You just concentrate on 'I think I'm doing great.'

Ashwini 00:10:03 - 00:10:04

Because other people are giving you the structure.

Brooke 00:10:04 - 00:10:57

Yeah, all this thing is set up for you. You'd maybe go and do some physio and then you go back have a rest in your bed, and then you'd go and see your neuropsychologist and then you'd have a rest. And you know, you're doing lots of resting and you'd never do two like physio. You'd never have say, one thing of physio which is quite physically tiring, you'd never have that on the morning and then in the afternoon as well they would never do that. They're spaced out across the week, but you don't realise that; you just think you're doing great, and you're doing fine, and you don't need these doctors and nurses and stuff telling you what to do, you'll fine on your own. But for that reason, it's not the real environment, so if you're ever taken out of that environment, then it would hit you quite hard.

Ashwini 00:10:57 - 00:11:02

So tell us about when you went to the Trafford Centre. What happened there?

Brooke 00:11:02 - 00:13:19

So that was a treat! I kept going on that I wanted a KFC. As great as our NHS is, their food is awful! So as my treat, we went to a restaurant that's still there now - it's in the main dome when you go in - it's called Las Iguanas. We went there, and the plan was to go there. My sister's boyfriend was driving at the time, Jay. I just found it so… you know when you get seasick… and bless him, he was driving as cautiously as he could. But I suppose the reason I've worked out is that I'd been still for three or four months. I'd not literally moved out of my bed and then all of a sudden, you've got up and you're travelling at 30 miles an hour, you're going around corners, and you're starting and stopping, and it totally knocked me for six. And then we'd parked with quite a walk to where we needed to go to where the restaurant was. I remember, we came in on the top level and I remember just feeling like I got vertigo or something, really disorientated.

Something that I worked out after was that I'd been in this hospital all this time, and I'd been in a small room, even the wards were like you know, it was no more than like 5 meters away from the wall. And all of a sudden, I'm in this massive room, and if you've ever been to the Trafford Centre and you've been in that central food hall, it's basically like 100 meters, possibly even more to the nearest wall. And I just think you come from one place where you haven't moved with the walls 5 meters away, and then you go to a place at 30 miles an hour and then round different corners and then all of a sudden, you're in this massive room.

Ashwini 00:13:19 - 00:13:20

With lots of people, presumably.

Brooke 00:08:40 - 00:08:41

With lots of people, yeah. Everybody in the hospital, I kind of knew their name (obviously I kept forgetting because I had a brain injury!), but I knew most of them, most of them were nurses, and you were used to seeing the same people - that's what I mean. And all of a sudden there was lots of different people.

Brooke 00:08:40 - 00:08:41

And lots of noise and light.

Brooke 00:08:40 - 00:08:41

Yeah, yeah. We chose a specific day that was quite quiet - I think we went on a Tuesday night or something like that just so it wouldn't be that busy, but it was still a lot busier than I'd been used to before - for the last five months anyway! So it was, yeah, quite a traumatic experience as my first outing.

You know, you sit there, and what happens is you're sat in your bed, and you're just imagining how your life would be, you know, you get into nightclubs and you're going to to do this and you can do that. And you don't know anything about how much the noise will affect you, how much the lighting would affect here, how much the music or other people; it's just you take any of that into account, so when it hits you, it hits you quite hard.

Ashwini 00:08:40 - 00:08:41

And did that make you realise that perhaps you weren't ready for the big wide world just yet?

Brooke 00:14:40 - 00:15:06

I don't think it did - I had this attitude that I was OK and I was maybe a little bit ashamed that I'd been telling everyone I was OK and then when the opportunity presented itself, I really wasn't OK, but I didn't want to admit that. So even to myself as well, I just made my own excuses in my head and I just put it down to a bad day at the office.

Ashwini 00:15:06 - 00:15:15

Yeah and I guess it touches on the issue of what we call insight and understanding. Having that full understanding of where you are versus where you think you are.

Brooke 00:15:15 - 00:15:18

Big time.

Ashwini 00:15:18 - 00:16:00

It's often seen with people with brain injuries that they don't necessarily have full insight, that they do think they're doing better than they are, or as we've discussed that you're in a fake environment in hospital where you have a structure and routine in place for you anyway. But when you're in the real world, if you like, those things aren't necessarily there, and it's quite an adjustment.

Thinking also about when you were in hospital, you've got some stories, haven't you, about some of the dreams and the confusion that you had. Talk to us about some of those.

Brooke 00:16:00 - 00:19:53

That was post-traumatic amnesia. So I guess by nature of the name, a lot of them I can't remember. I was in this state of post-traumatic amnesia for six weeks we worked out, and I can probably remember one or two nights of it.

My mum and my sister had come in one morning – again, another trauma that I've introduced them to - when they came in, I was full of bad language and stuff and I was pointing to this nurse that been there and I'd accused him of all sorts of stuff. I accused him of kidnapping me and what I said, and do you know what, it's bizarre because I've still got this memory of this actually happening, I just know that it was not a real memory and that I've made it up, but I still have the memory of it happening. I remember being sat on a train - you know, every so often there is a table, so I was sat at a table and I remember this guy had a gun up at the bottom of the table pointing towards me and I was being kidnapped. But I supposed you don't really fill these stories in when your brain's not working properly. Like, why was I being kidnapped? I had no idea, it doesn't make any sense and I don't think I thought to ask - I was just being kidnapped. The woman pushing the trolley was the health care assistant that used to work in the hospital; you know, it's a bit of a coincidence as well, why didn't I work out - I don't know! The guy I accused of kidnapping me was actually the nurse who was what they called specialing me, so he was sat by my bedside all night. So this poor guy had sat by my bedside for his entire shift, and I thanked him by accusing him of kidnapping me. That was the first one I can remember.

The second one is perhaps a little bit funnier. So I spoke to this nurse called Aaron, and I still want to go back because apparently, he's still working there, so I still want to meet him. I asked him where my slippers were because I was always losing stuff, even though it was just around my bed. I asked him if he'd seen my slippers and I told him I think I left them in the steak restaurant, which obviously confused him because there was a hospital canteen and that's all there was; I don't think there was a steak restaurant, or at least nobody had told me anyway! I told him that it was on the roof, and again I've still got this genuine memory of this happening to me. I'd gone up on this roof where there was a field of cows, and it was a bit like, you know when you go into a seafood restaurant, you choose the fish you're going to eat out of the tank, and it was a bit like that and you chose to cow you wanted to eat. I thought this was in the hospital, and if you sit and think about it, that's so easy to disprove because that would mean they would have had to, in a sterile environment, which is a hospital, lead a load of cows through up in the lift, up to the roof! But I guess with a brain that's been in shock, you just don't think about anything like that.

Ashwini 00:19:53 - 00:20:36

Yeah, well, yes, and I think that's a great example of what we call confabulation, where you have these weird and fantastical memories that feel very real but are obviously not real when you sit and rationalise them, but they sort of fill in the gaps of other real memories. So a bit like the dream with the nurse kidnapping you, you know you've got real memories of the nurse who's sitting by your bed and the health care assistant, they featured in your dream, but then your brain, I guess in it its way of repairing itself, it's then reaching for other memories that don't really exist.

Brooke 00:20:36 - 00:20:38

Maybe that had come from a film or something that I've seen.

Ashwini 00:20:38 - 00:20:39

Maybe yeah, and just sort of joining up the dots, but in the wrong way.

Brooke 00:20:39 - 00:20:45

Yeah, hugely the wrong way!

Ashwini 00:20:45 - 00:21:18

Very much so, unless Salford Royal has got a steak restaurant on the roof now, I don't know! But it's very interesting and I think it goes to show how brain injury can affect people in so many different ways during your recovery. I think it's important to note that recovery is different for everybody.

So what might have happened to you as part of your recovery process won't necessarily be the same for the next person because everybody is different.

Brooke 00:21:18 – 00:21:40

Is an absolute lottery isn't it. There's just so many different factors, different types and different parts of the brain that do different things. You're never going to injure the same cells as that same person, and even so, even if you do injure the same cells, they've got a different brain, so it will have a different effect on them.

Ashwini 00:21:40 - 00:22:32

Yeah, absolutely. And you know, we've mentioned how you were a young man, you were a very fit and healthy young man, and that, of course, might have changed the outcome for you, as opposed to somebody else who perhaps wasn't at the same age or same level of health. So it's very different and that leads us quite nicely to thinking about tips for friends and family members when their loved one is in hospital.

So you mentioned about early stimulation. I think it's important as well, though not to overwhelm somebody so that there's too much stimulation and you know, we saw that with your trip to the Trafford Centre, that was perhaps a bit too overwhelming. It's finding the right balance, but in what ways do you think friends and family could stimulate their loved one in hospital?

Brooke 00:22:32 - 00:22:57

I suppose one thing was that with those in the hospital, there became this culture of who's doing the best and who's recovering the best. And you can, I guess with family and stuff, this could happen as well; they could overstimulate and over push them, I guess. So what you've got to do is take the advice of the doctors and take it very seriously.

Ashwini 00:22:57 - 00:23:13

Absolutely, I think it's those discussions with the treating team about how a family member or friend can help, what they can do, and making sure that they're working in tandem with the clinical team, so they're not upsetting the routine and the structure.

Brooke 00:23:13 - 00:23:40

Yeah, you can do too much, I think, but you can do too little as well.

I think pictures too; my family brought in different pictures - anything from their old life because the hospital, it's horrible, it's a very clinical environment, its green, it's grey, and it's not very nice, so anything you can bring from home, anything that can familiarise them with it.

Ashwini 00:23:40 - 00:23:46

So perhaps music as well if they brought in an MP3 or an iPod.

Brooke 00:23:46 - 00:24:07

Yeah, yeah, don't bring a ghetto blaster that won't go down very well!

My dad brought me an MP3, like a shuffle, just loaded with my favourite songs on it and put it in my ears. They used to do that when I was in a coma, actually, they put them in my ears and just let me listen to them.

Ashwini 00:24:07 - 00:24:20

Just to try to stimulate something.

I guess also, talking to somebody whilst they're in hospital, just talking about anything really - talking about things that have happened in the past, or just to try and?

Brooke 00:24:20 - 00:24:32

Yeah. I think I would say, don't get too stressed if the person repeats themselves; that's what's going to happen a lot, especially in post-traumatic amnesia.

Ashwini 00:24:32 - 00:24:39

I guess also you mentioned pictures – perhaps bringing in things for them to read or reading to them.

Brooke 00:24:39 – 00:25:02

When I was in hospital, I was reading and I was shutting one eye and you know I didn't really realise why I was shutting one eye, I was just doing it because it was easier. But that's because I had double vision. I mean, obviously, it was a lot worse then, it's got a lot better now, but I've still got it now, and I still do it now – shut one eye, that's why I can't read!

Ashwini 00:25:02 - 00:25:37

I suppose if friends and family members that are visiting notice things like that, then feeding that back to the clinical team.

I suppose coming back to other tips and advice for friends or family, certainly to liaise with the clinical team and ask them what they can do to help, how they can help.

We talked before about not overwhelming someone too much, so another thing could be that somebody takes responsibility for organising who's visiting when so that you don't have all your friends at once.

Brooke 00:25:37 - 00:25:46

Yeah, too many people, which I did on a couple of occasions - well, that was just the one set of friends you know they came in from the bar and…

Ashwini 00:25:46 - 00:25:49

Not from the bar…

Brooke 00:25:49 - 00:26:00

Yeah, not literally from the bar! After a couple of Stella's, they'd come along to see Brooke! They all came along at once, but they were one group of friends, so it wasn't like I was like having several different groups.

Ashwini 00:26:00 - 00:26:13

Yeah, I guess also it's important, though, not to overwhelm because people can find that they have difficulty following more than one person if there are lots of people speaking at once.

Brooke 00:26:13 - 00:27:21

I've still get that now 15 years later. I suppose the perfect environment for me would be a coffee shop on Tuesday afternoon, but it's not very rock and roll, is it? It's not really what you want to become!

Something that's happened to me as well is that I still want to, so from when I had the injury, I was chasing to get back to the person I was and, in a sense, still am. But that person is 25 years old and I'm now 38, so I've lost a bit of time.

It's just been a whole weird thing for me and I think I've lost out on a lot of that period of when you be coming to an adult.

I mean, I've done things; I've been to Australia, moved away from home, and been to uni. But a lot of the mundane things like buying a house, getting your first job, finishing uni, I never got to do that, so I missed out on that.

Ashwini 00:27:21 - 00:27:24

Yeah, yeah, it's sort of typical life milestones.

Brooke 00:27:24 - 00:27:38

Yeah, I think the time when you become from being a teenager into an adult, I kind of missed that – that period of my life was different from everyone else's.

Ashwini 00:27:38 - 00:30:15

Yeah, and it's a significant adjustment. You say you were chasing who you were, but who you became after the injury was kind of a new you, and it's important that people realise that - family, friends, anyone really, that after an injury, it's very difficult for that person to return to exactly how they were, there will be a change.

Coming back to some other tips as well, I guess this is for our audience generally - asking to be involved in meetings with the clinical team so that they know what the direction of travel is in relation to care and rehabilitation and that they can have some inputs as well because as the people closest to the injured person they know that person really well and that can help to inform the clinical team about how somebody might improve or might react or benefit to a course of action.

There are also various external sources of support. Headway is a particular source of support – Headway is a national charity that supports survivors of brain injury, but also their friends, their families, their carers, and they have a wealth of information on their website and fact sheets about what people can do, and the resources that they can turn to.

There are also other charities and organisations like the Brain Injury Group. There may be more local community organisations. Headway also runs a HATS nurse scheme, and again the HATS nurse in the hospital might be able to provide some specific support. So there are various things that friends and family can do and turn to to support their loved one and for themselves in terms of understanding what's going on and how they feel about it because we know that brain injuries are a huge adjustment. We've talked about not going back to the old you, which is a big adjustment for you, but it's equally a big adjustment for everyone else who knew you as you were and are coming to terms with you as you are now.

Brooke 00:30:15 - 00:30:33

It's like a grieving process. You're grieving for that person; that person has gone, even though they're physically still there, and they largely look the same; essentially, they're not the same person. The brain inside their head has changed, so they're essentially a different person.

Ashwini 00:30:33 - 00:30:35

Yeah, it's the new you.

Brooke 00:30:35 - 00:31:23

Yeah, and it's about being positive about that and not being hung up on the old you because you're never going to achieve that, so there's very little point in mourning over that. There's a thing in what was Hope Hospital, in Salford Royal; it's probably still there now. It's in Salford Royal Hospital, in the neuropsychology department is a big mural on the wall. It says, 'Don't look back, you're not going that way', and I've come to realise how correct that is later in my recovery because there's no point looking back you, you're going forward, and you need to concentrate on the person that you can become now.

Ashwini 00:31:23 - 00:31:40

I think that's a really positive message.

Thank you for sharing your experiences Brooke, and that was really, really helpful and I'm sure our listeners would agree.

Join us next time when we'll be talking about fatigue and the importance of rest, and tips around managing fatigue.

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