
James (0:30) | Welcome to a podcast from the HealthTech Research Centre in Brain Injury, where I'm chatting to people affected by brain injury. Maybe they're professionals, maybe they're patients, maybe they're charities, and it's fantastic to be joined by Steph Grant today. Steph, you are a brain injury survivor.I wonder if you could just tell us a little bit about your story, what happened to you? | ||
Steph (0:46) | Well, good morning, James. I'm glad to be here. I'm a traumatic brain injury survivor.I sustained my traumatic brain injury, TBI, in 1985, James, a long time ago, when I was a young man waiting to go to university. | ||
James (0:58) | Wow, so that's a really long time ago, Steph. And do you think that you're now all better and all recovered, Steph? Or are you still suffering from things that happened, what, 40 years ago? | ||
Steph (1:05) | Yes, yes. Yes, still, the daily impacts of the TBI live with me, James. | ||
James (1:10) | Steph, do you mind if I ask how your injury happened? Was it a car accident or something like that, very common? | ||
Steph (1:46) | It was a car accident. It was a high-speed head-on collision and killed both drivers, and I was a front-seat passenger, and ended up in a coma in hospital. And I came out of hospital, first of all, I was kept in my bedroom in the house where I was, and I didn't remember anybody or anything, very little.And my wife was showing me photos and things that we'd been doing with our friends, camping and going on motorcycling trips. | ||
James (1:49) | Yeah, so you're trying to get those memories. Is Steph still in there? | ||
Steph (2:40) | Largely, that was unsuccessful, until it was time for a strike, a minor strike. Well, I was living just over the border from South Yorkshire, in North Nottinghamshire at the time, but my family were colleagues from South Yorkshire. And my friend came to visit me while I was still on, not long after I'd come out of hospital.My wife said to me Steph, Raymonds here, your best friend from school. I ran down the stairs, because suddenly, that was perhaps the first memory I had. He was a scab, he was working during the strike.
So I ran out there and chased him and his wife and his kids out of the street, shouting and swearing at them. |
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James (2:54) | Wow, that's a mixed story, isn't it? So you kind of remember somebody, you have this recollection there's somebody, but somebody you don't want to see in that kind of context, and that harsh kind of political environment at the time. | ||
Steph (3:13) | Yeah, and then just one day, I woke up at University of Reading, James. I didn't know where I was. I didn't know if I was in a cell or anything.I was in this small room. And it turned out that I was at Reading University doing my degree in sociology. | ||
James (3:20) | But you don't really remember that process of going to university and suddenly you realise you must have done it because you were there. | ||
Steph (5:57) | Yeah, yeah. I don't think I got myself there. I don't think I could have done.But friends and family do say that I was shot while I was in hospital. And I'd come around, once I'd come out of my coma, and they were visiting me. They were asking me what I was doing.
And I was telling them that I'd been in exams or seminars all day. And because I hadn't been anywhere, I'd been in the hospital. I think it was a consultant had said to me, wife, just get him down there and see how he does. And we'll keep an eye on him for two years. And so I was going down there and coming back up at home at weekend and holidays. And with my wife and child, James, it was a pretty good set up because somehow they'd gotten this package together to look after me. So I was seeing the hospital, the consultant and whatnot, at the Bassett Law District General Hospital when I was on. But when I was down at Reading University, I was going to a place called Radcliffe Neurological Infirmary in Oxford. And also the Students' Union Welfare Office were helping me out. Because I couldn't remember where my classrooms were, where I got to go to lectures or when I'd got to go or anything like that. Everything was out of place, James. And I think I was fortunate because one of the things I was studying were institutions, total institutions. And I was studying Irving Goffman's total institutions. He looked mostly mainly at residential secure mental hospitals because he saw them as the total institution. But he also looked at other institutions like prisons and armies and universities and boarding schools. And he talked about the difficulties people have adjusting, of maintaining a sense of self and identity in these total institutions, because they're told where to sleep, what room they're going. Often they can't have photos about and that sort of thing. They can be moved from one place to another just like that. They told when to have the meals, often what to have and that sort of thing. Yeah. |
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James (6:05) | And did it feel like that for you at university? Did it feel like you were told what to do? And was it actually helpful for you to be told what to do? | ||
Steph (7:06) | Well, it was helpful. It was helpful. It gave me a structure because I felt devoid of any structure.And I knew it wasn't because I'd been put into an institution, an institution, gone to university. I knew it wasn't because of that. I think I understood, but I never used to think about it very much.
But sometimes when I was lucid, I understood that it was because of my brain injury and that I couldn't remember things. And those times when I was pretty lucid, I used to get pretty upset as well. One of the things that lives with me, James, is I'm what neurologists call emotionally labile. I describe it as emotionally unstable. It means my emotions can swing about and I relive experiences emotionally. Not necessarily remember them and articulate them in my head, but emotionally relive them. |
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James (7:07) | Yeah. | ||
Steph (7:08) | Devastating experiences. | ||
James (7:33) | I'm fascinated, Steph, by your university experience because clearly that's a really intellectually challenging course that you're doing there. There's some complicated ideas you've just described to us now, some really in-depth sociological research. But were you okay with that?You could follow the course, you could study and you could understand all of that information. | ||
Steph (10:34) | James, I could. It was amazing because I was focused on it and I didn't have distractions. Looking back on it, I didn't have the distractions of other memories and I didn't really know my wife very well or my son.And I couldn't remember my friends very well. When I returned home at the weekends and at joint holidays, people would meet me who know me and my family and I would have no idea who they were, James. But because I was focused on those pieces of work, I was able to do that.
It's amazing because I look back on it now and I wrote a paper a while back, The Perception of Severe Head Injury as a Social Problem. So during the course of writing that paper, I came across some research that we're doing on Baron Wilhelm von Richthofen, the Red Baron, the flying ace pilot. Apparently, he had a near-fatal head injury before he became a really ace pilot. He was an ace pilot before, but then he got hit and he sustained a head injury. And when he came out of that head injury, he was bawdy where he hadn't been bawdy before. He was grabbing older women, he was getting into fights, he was a drunk and a Luftwaffe wouldn't let him back in because he was too disturbed. They said he was mentally ill, he's not rating head. But he was a rich guy and he's got his plane in his private hangar and he painted it all red and off he went out to fight against the Allies. It was amazing. And I read about this story being described as I'd never read it before. And it seemed to the witnesses who saw him that he committed suicide in spectacular fashion, probably being unaware. Happened not committing suicide, just being focused, James. Just being focused. Target fixated, they called it. Focused on shooting down the Allied planes. So he just chased them. Apparently, you know, Allies hated it, the Baron chased them because he wouldn't stop until he shot them down. And that's all he did. So I wrote that paper years later after I'd been at Reading University. But looking at Reading University and asking me could I concentrate on those things? How could I focus on those intellectual tasks? I think I was that target fixated. I wanted to get my degree. That's what I was doing. That's what drove me when I came out of my coma. I was talking to people as if I were at university and I'd never been to university, but I thought I was there. And when I was there, I was focused on my tasks. |
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James (10:48) | So that's fantastic. That means that you can start and you can do this really difficult work. But did that mean that you weren't focused on other things?So could you look after yourself, cook your dinners and do your washing and get to bed on time? | ||
Steph (12:23) | No, I couldn't do any of those things at all. I didn't eat. I couldn't look after myself.So they fetched my wife down to look after me. My wife and son, they got us married to go out today. And my wife come from a mining family.
They were colleagues too. She came from a poor place in Doncaster. And suddenly we were living there. We were living, well, we had plenty of money. We didn't have to pay any board and we didn't pay student fees in those days, James. And my wife got a job in the kitchen and it seemed like we had lots of money and we were mixing with lots of different people from cultures that we'd never met before. Not just people from other countries, James, but the class of people we were mixing with, the socioeconomic class, eh? And my wife developed an illness that was some form of the three words, schizophrenic psychosis, paranoia, something like that. She became really ill because I was such a different person. I was so different to what I'd been before. So I was a bit like the Red Baron, you know. I was drinking. I was swearing. I didn't do those things before my accident. My body was a temple. I didn't swear. I was a good chap, I thought. |
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James (12:36) | So it must be enormously difficult for the people around you to kind of cope with this. Yeah, really difficult. They love you and they want to care for you and they want to help and support you, but who's supporting them? | ||
Steph (14:04) | Yeah, absolutely. And that's something I care passionately about now. This idea of ambiguous loss, whereas the person's there, but it's as if they're not there.It's in a way as if they've dead. And I mentioned that again because we were talking about university and it being a bit difficult for other people around me. And I mentioned my wife had gotten ill.
And because I think she experienced that ambiguous loss. The last word she ever said to me, James, was, I just want my old Steph back. And I went out to pub to watch a game of pool and came back and got into bed and slept. And in the morning I woke up and she was shallow breathing next to me in bed. And on the way she took tablets and died. I'm so sorry to hear that. So I'm really passionate, James, about looking after those around us, looking after the victims around us. Because a lot of the time I couldn't even remember I'd got a brain injury, let alone be able to help her out. And anyway, I would just focus on my studies. That's what I was doing. |
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James (14:40) | Yeah. And without that ability to see further and to offer that support that those people we love really need. And Steph, I don't want to dwell on this stuff because it's really difficult.And I'm so sorry that you've been through this experience. I want to turn to think about where you are now because we've met in some previous meetings and I've always just been really impressed by your dedication to helping other people and doing what you can to support people. So I wonder if you could tell us a bit about some of the groups that you work with at the moment. | ||
Steph (18:53) | Well, I feel like the biggest group I work with, well for sure, is the Head Injury and Illness Research Group based in Sheffield. And I chair that group, I sort of co-founded it. I say we're based in Sheffield, but we've got connections and allies and members from across the country.I believe you've even been to one of our meetings yourself, James. And that group came out of another research partnership in there around 2005. I got asked to sit on a research collective between survivors and carers and members of the charity Edway and clinicians, neuro-rehabilitation clinicians, and specialist brain injury social workers.
We really had them in those days, James. And I sat on that. And I met a guy on there, Richard Brain Injuries, like myself. And on that group, we were the leaders of the research, those who were directing it. And really, we felt to be on a parity with the clinicians. We also had some help from some researchers from the University of York. It sort of gave us confidence, James, to be able to do things. Because I'd always felt like that I were a researcher, but I felt like I were a thwarted researcher, because I never got through that degree at Reading University. I did finish my degree at another university, but many things happened between then. Researching in the Brain Injury Rehabilitation Research Partnership, BIRP, with clinicians from the Sheffield Community Brain Injury Rehab Team and others from Edway and other volunteers, I started to deliver brain injury awareness training with another survivor. And I delivered it with a specialist brain injury social worker, the manager of the place in Sheffield, and with a clinician, a neuro-rehab clinician from the Community Brain Injury Rehab Team. The first session was led by Simon Eggington, the social worker manager. And I asked him if I could lead the next one. And I led him ever since, James. That was years ago. And while doing that, it was, ee, this was later, 2012. And I came across some research that had been done in Leeds and Toronto in Canada. And that showed that, well, in Toronto in 2008, they showed that around 53% of the population, homeless population in their city, had sustained a TBI, a traumatic brain injury. And that was fairly replicated in May 2012 in Leeds by a disability trust group that they researched it out. And that was in 2012, May 2012. And they showed that 48% of the homeless population in Leeds sustained a TBI. And both studies showed that the overwhelming majority of these people sustained the first TBI prior to becoming homeless. So that suggested a causal link to me. And we incorporated these figures into our training and consolidated them with our only lived experience, because we'd had an idea separately. And together, me and this guy had had experiences of homelessness. And we thought something can be done about this brain injury and homelessness. And then to read, James, that it was so, there was so much brain injury in homeless populations. Half the homeless population have got a brain injury. And overwhelmingly, most of them sustained it prior to becoming homeless. |
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James (19:08) | Well, yeah. And one can think that there must be many reasons why having that brain injury might end up with homelessness. People kind of get lost and they can't navigate benefit systems, their relationships break down.There are all sorts of reasons, aren't there? | ||
Steph (20:17) | And that's what I wanted to find out, James. That's what me and my colleague wanted to find out. So we started getting together of interested professionals, interested researchers in conducting a study that used the same methodology of the Brain Injury Research Partnership, you know, being led by the survivors and carers, but being supported by clinicians and professionals and researchers to help us do it.Because we live with the daily impact, we don't get through a day. And we decided to do a qualitative piece of research to try and investigate why this happens. Why the people and what can be done?
Where are the gaps that appear again and again in different cases? Are there any common things that keep happening? And we intuitively felt that it should be done qualitatively, not quantitatively. And we intuitively felt it should be led by people like us who've experienced that. |
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James (20:24) | So how did you do that? You went out onto the streets or you found homeless people living in different settings and just sort of spoke to them? | ||
Steph (22:53) | And well, we were very, very fortunate. But there's only one wet house in Sheffield, and the wet house is defined as they're allowed to be drunk there. They're allowed to take their alcohol there, but they leave it at the door and they pick it up when they go out.But it doesn't matter whether they're drunk or on drugs, they can be there. And most of them find it as a place of sanctuary. So it's called Ben's Centre for Vulnerable People, but more commonly it's known as Ben's Centre for Homeless Street Drinkers.
And I know people who went there, I had some experience myself in the very early days of Ben's Centre. That's where we found our homeless people. We got them to work with us, Ben's Centre, and they were all keen for us. They were all keen for something to be done because mostly what they were doing was they were looking after people. They were looking and they were intuitively aware that many of their client group, for want of a better word, had head injuries, because a lot of the guys used to get their head shaved there. It's easier to look after your hair if you just get it shaved off. And many of them had scars on their heads. So they wanted to do this as well, because they're a charity and they've got to raise money to do this. So they run a campaign to get money to show an homeless person, and he might have a can in his hand, and he might have a syringe in his arm, and he's got a dog there. And that's how people think of homelessness, but it's much more complex than that. That's just one visible aspect of it. And I came across some research being done by a guy called John Dean at Allam University, and he talked about how the misrepresentation of homelessness defines the issue. So people think of homelessness, and if it's misrepresented as people who are on drugs or alcoholic and they've got a dog there in vacant streets, then the real causes of homelessness aren't going to be addressed. |
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James (23:20) | Yeah, and I guess the centre that you described in Sheffield, they're doing amazing work, but they're treating the symptoms, aren't they? Trying to help people get by day to day. And actually, what you're talking about is, can we get to the root cause of this?Can we understand why it is that people end up homeless and intervene earlier before that happens? Yeah, yeah. Have you come up with solutions?
Did you find common reasons why people end up being homeless after head injury? |
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Steph (24:38) | I think we did, James. We eventually published our findings in 2016. But it didn't seem to get very far, I don't think.It did in Sheffield. We certainly raised a lot of awareness, and I think across the country too, it helped. But things haven't vastly changed.
Some things have changed to service provision in Sheffield, like the service now, the Sheffield Community Brain Injury Rehab Team, they now help provide a service that is led by brain injury survivors who've been through a programme of rehabilitation at the centre, because we found that that was after people had been through rehab, they went out there into the community, and still nobody knew about brain injury. Nobody understood what they were going through. And they had to keep saying the same things over again. So what was established was the clinicians in Sheffield now facilitate essentially peer support groups. It was different to the other peer support groups in Sheffield. And it works really remarkably, extremely well. |
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James (24:58) | I guess my question is, what should we do? What do we need to change? If money's no object, what could we do tomorrow to reduce the impact of head injury on people, to reduce the numbers of people with head injury that end up being homeless?Are there some fixes that we could do to change this and help people? | ||
Steph (27:57) | I think there needs to be a greater awareness. And that's not just all about increasing the number of training sessions that you do or increasing the volume of people that you train. It's about where you put that train, who you deliver it to.And it's about looking at things totally different. And it's about giving, letting the brain injured folk, letting some of them certainly take control, take handle of the reins, sort of drive the source, drive where it's going to rather than be done for again and done to. There needs to be a complete reappraisal of brain injury and homelessness.
Yeah. It's brain injury that needs that complete reappraisal, isn't it, James? I mean, because so little is known about it. There's an old John Mills film, I forget what it's called now, but he has an accident on a train and he gets a TBI and he's in hospital for something like 11 months. And the consultant says to him when he goes out at door, he says to him, try not to get too excited. The world can seem a strange place after you've had a brain injury. That seems like sensible advice, but very little advice. And where's the world gone? We haven't done very well with brain injury so far. Although having said that, there are lots of other groups I'm involved with, and I know you are too. Things are happening now. I am quite optimistic that there's the Edge Together group, there's the Brain Injury Social Work group that's, they're all building up momentum. And of course, we've got UKABIF and Chloe Hayward who seems to have an encyclopaedic contact of knowledge. She's like the yellow pages of brain injury all over the UK. So things are happening. And I think that amongst those of us that know, we know this has to be done. And we know it's not just about increasing the volumes. It is about where we get that message to. It is about getting it to the social workers, into adult social care. It's about getting it into housing. But at a top level, it's about getting it into the police force and the criminal justice system. I mean, there are comparable figures for homelessness and brain injury as there are for prison populations and brain injury. And the figures for women are depressingly much higher than female populations, much more prevalent in brain injury. |
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James (28:07) | Yeah, and we know that at the moment, the government are promising some kind of action plan around acquired brain injury. We look forward to hearing a bit more about that. You mentioned Chloe from UKABIF, and I recorded one of these podcasts with her recently about the cost of the UK economy of brain injury.Well, we can save some of those costs if we're not rescuing people because we've abandoned them earlier on in their scheme, then, you know, spend the money earlier rather than later and less. | ||
Steph (28:35) | Yeah, and that access to rehab, it made so much difference to me. I mean, I was picked up by a social worker, Jenny Garber. I was in my house. I was a wreck. I didn't finish my degree at Reading University. I did finish it years and years later at Stirling University.But in between them, my first wife had died and I'd moved up to Scotland so I could stay with my son. And life went to pieces. I couldn't do anything.
It took me years and years to get my degree and I never got my honours when I got it. And I remarried. I married a great woman. I love her to bits. She's sat beside me now, James. But we experienced some awful times because, well, essentially because of my brain injury. |
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James (29:22) | I think what you're saying, Steph, is that despite the enormous trauma and difficulties you've been through, you're finding with support of other people, with your new wife and your family, you're finding a way forwards. And what's fantastic is that you're using that energy to give something back and to help other people. | ||
Steph (29:41) | Yeah, and the essential thing, I think the necessary thing that I forgot was it was access to rehab, access to a head injury assessment unit and then a community rehab for many months. And it was having that input from the Sheffield Community Brain Injury Rehab team. And when I.. it was my wife, my present wife, did the research, actually, you know, James. I found out later that the social worker, Jenny Garber, who dealt with me, who'd come to this horrible place I was living and got me into assessment unit and neuro rehab. And I found out that she was very passionate about helping the families, the spouses and the families of, because she does actually say, I've read it from her saying it, often the survivor forgets that they've got a brain injury. And it so resonated with me. And for years I thought that Jenny Garber, being a social worker, who helped me when I'd abused her and told her to go away, swearing at her. And she stayed there and waited for me to calm down or something and then took me off. I thought she did that for me. But afterwards I realised, many years later, that she was really caring about the families, the wives and husbands and families of. And I think what I must have put my wife through. my family and that's why I'm very passionate about continuing the work I do and I will accept the invitation to lecture again at University Sheffield again this year because I think it's important to get that message across. | ||
James (31:32) | It's really important. And that seems like a very sensible place to end our conversation, Steph. I could talk to you all day because it's fascinating. And thank you so much for sharing your story with us on the podcast. If people are interested in hearing more stories like Steph's, you can check out the other podcasts in this series. And some of the other groups that we've talked about in this chat today are featuring in those podcasts. So thanks ever so much for your time, Steph. |
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Steph(31:59) | Thank you. Thank you, James. |
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