| James (0:08) | You are listening to a podcast from the Healthcare Research Centre in Brain and Spinal Injury. My name is James Piercy and I've been chatting to all sorts of people with an interest and experience in those serious conditions and today I'm really pleased to be joined by Mark Holland from Backup, the spinal injury charity. Hi Mark, thanks for joining us on the podcast. | ||
| Mark (0:30) | Hi, good morning, thanks for having me. | ||
| James (0:32) | No, it's a real pleasure. I'm really interested in the work that Backup do to support people after a spinal injury. Can you give us a little bit of the history of the organisation?How old are you? How long have you been around? | ||
| Mark (0:42) | So we're actually into our 40th year this year. We started in 1986 for a gentleman who had a skiing accident and he has a high level spinal cord injury as a result of that and he started off by wanting to get back up the mountain, which is where the term Backup comes from. | ||
| James (1:04) | Okay, that's interesting. Yes, so an anniversary year then for you guys and I'm thinking that, you know, back in 86 it was kind of tiny. There were what, you know, a couple of three people involved and it's kind of grown over those 40 years.Do you know any idea how many people you work with at the moment? | ||
| Mark (1:21) | Yeah, well roughly I think we've got about 72. It's quite a big charity now. Yeah, obviously it was quite very small in the beginning but, you know, the more people we support every year, the more funding we get and the larger we get, which means we can support even more people going forwards and hopefully that will continue to grow and grow and grow. | ||
| James (1:43) | Yeah, that's great to hear. And do you know how many people do you support each year? Because we know that obviously spinal injury is huge.There are many, many thousands of people affected over the country. | ||
| Mark (1:54) | It's thousands. You know, we have 11 spinal units in the country. We've got an outreach worker who visits them every week and we've got a couple of roving outreach workers where they start going into like the major trauma units and like the small rehab centres and the biggest problem is is that there's 80% of the spinal injuries every year don't get to a spinal unit.So on average it's about 4,400 a year. So, you know, we are only scratching the surface on who we can support. | ||
| James (2:31) | Yeah, that's quite a worrying statistic, isn't it, I guess. Do we know why those people don't end up there? They're just not beds available or they're not deemed serious enough? | ||
| Mark (2:40) | There is a plethora of reasons, you know. Other comorbidities can stop people getting to a spinal unit, not being suitable. A lot of people, they go into the major trauma units when they have their accidents or injuries or medical complications.Then they end up in a smaller hospital, maybe a community hospital like me, and they do their rehab there and they get to a point where they're independent, as far as independent as possible or deemed possible. So, because the waiting lists are so long in the spinal units, they never make it there. It's not deemed that they're going to gain anything or the patient just gets to the point where it's like, well, I've had enough, I'm going home.
So, yeah, there is countless amounts of reasons as to why. I mean, I know from personal experience that I waited six months to get to a spinal unit. |
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| James (3:32) | That's a long time. Yeah, so obviously you mentioned that you have an injury yourself and one of the things that I thought was really interesting about the organisation is it's a really high number of people that work for Backup that are directly affected by spinal injury and either have an injury themselves or they're caring for somebody who has an injury. I wonder if you'd mind telling us a bit about your case, Mark.When did your injury happen? What happened to you? | ||
| Mark (3:55) | So, I've actually just had my three-year anniversary. So, on the 7th of July 2023, I was mountain biking in France with a few friends. I don't remember any of it, which is probably good, and I crashed.I went over my handlebars and I shattered my T12 vertebrae, which lodged itself in my spinal cord. A few other broken bones. The bike was fine, but it normally is.
Yeah, so it's just happened just over three years now. |
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| James (4:24) | Yeah. Wow. So, you were sort of in the middle of nowhere.So, what happens? Presumably, you know, you're with some people and they're like, well, we've got to do something to help. Mark, did you get sort of rescued off the mountain?
And obviously, it's worse moving people around, I guess. |
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| Mark (4:41) | Yeah, so I had quite a bit of a journey, really, to be fair. I crashed on the mountain and the three mates who I was with, they were at the bottom of the mountain, bottom of the trail, waiting for me. Never made it down.So, one of them ran back up the trail to find me, whilst the another one was being proactive and went and got a medic. We were quite near Chatel Bike Park, so they've got medics there anyway. So, they came up and sort of like helped me out.
Three hours later, I had a helicopter ride across the border into Geneva. I ended up in Geneva University Hospital. Was there for three weeks. Amazing hospital. Amazing, amazing hospital. Can't thank them enough for putting me back together. Yeah, so it was kind of like, I missed, I don't remember the helicopter ride, which is a shame because, you know, imagine a helicopter ride across the Alps. Would have been absolutely glorious to see, but maybe another day. |
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| James (5:37) | Yeah, I don't remember my helicopter trip either. It wasn't quite as dramatic as yours because it was only across Norfolk. | ||
| Mark (5:44) | Still beautiful, beautiful place. | ||
| James (5:47) | And then you say it took sort of six months to get into a spinal injury unit and then I guess what you spent a bunch of time there in kind of rehabilitation and learning to get some kind of independence back. | ||
| Mark (5:59) | Yeah, the hospital that I was in after getting back from Geneva was Kettering and then three weeks later they moved me to a really small community hospital in Corby. Absolutely amazing, you know, really, really intensive staff. I'd never really had much to deal with spinal cord injuries, but, you know, incredible.What a wonderful team. I'm still really good friends with them now and I pop in regularly because it's only around the corner from me. My physio, Sean, really big shout out to the guy.
Really, really took it on board to sort of like help me out as much as he could and yeah, they're amazing. So then I got a bed in Stoke Mandeville spinal unit and went to Stoke Mandeville. Again, can't fault it. Really, really good. Amazing. Met a lot of people, did a lot of things involved in a lot of sports like wheelchair rugby and wheelchair basketball and tennis, all that type of stuff and that's where I met Backup. Yeah, I met my, who's now my line manager, Chris. They do wheelchair skills, which is one of our big services that we offer in the spine units, which is exactly what it sounds. They go down to the sports stadium and they teach newly injured people or anybody in a wheelchair with a spinal cord injury how to use their wheelchair safely and effectively. |
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| James (7:22) | Yeah, and that's so important, isn't it? Because, well, as in your case, many are like this. I guess it's out of nowhere.You're a completely different person with completely different capabilities, you know, in a moment and why would you know how to safely use a wheelchair? You've probably never sat in one before and I guess there's, maybe there's an assumption that that's kind of easy and people just get on with it, but clearly it's not. So it's great that you have that kind of service, you know, to work with people and teach them, I guess, in some ways, fairly basic things but really important things. | ||
| Mark (7:56) | Yeah, definitely. I mean, I, you know, you don't know what you don't know and we all sort of, you know, as a kid I was in my Nan's wheelchair and I never really looked back and think, oh, well, I was alright in my Nan's wheelchair. It's such an invaluable experience to be involved in those wheelchair skills sessions because you learn so much from it and, you know, it can be, obviously, everybody's different, everybody's got different capabilities and different level of injuries and, you know, everybody's got different functions in their arms and just being able to be taught how to push your chair one-handed or showing, just be showing a different way and how to do that, you know, and we all do it around the house, you know, whether that be cooking, you know, carrying a cold drink, hot drink to the sofa, you know, in a pub with a glass of wine or a pint and just being able to be taught how to push it one-handed in a different way or thinking about different ways of doing it and then going on to curbs and going up curbs and going down curbs safely and how to be verbally independent if you can't do it on your own, you know, all these things that, as an able-bodied person, I took for granted, you know, the state of the paths, people parking over drop curbs and people parking their cars right over the path so you can't get through and, you know, you don't think about these things until you actually need to think about these things and you're thrust into that lifestyle and yeah, like Chris, the volunteers who come down and teach you, it's an exceptional skill, you know, I was quite confident, I was, I was a bit of a jack the lad in my wheelchair thinking I knew everything and I come away just blown away and that was my first sort of experience of back-up. | ||
| James (9:44) | That's really interesting, so you've described your sort of journey in the early stage but you've clearly been on another longer journey because here you are only three years after this life-changing injury and now you're helping other people and you're involved as part of Backup, not just being supported but helping other people too. | ||
| Mark (10:03) | Yeah, definitely, I mean, I think a lot of it is, a lot of my journey has been, you know, I've got an incredible support network around me, you know, my wife and my kids, you know, massive driving force but also Backup giving me the opportunities, teaching me the opportunities and not just through like wheelchair skills but through all the services they offered, you know, we, my wife had mentoring through them, you know, because it's not just those who've got a spinal cord injury that we support, it's the family members as well because they're kind of like the forgotten heroes. I know from experience that I sat in a spinal unit or in hospital for ten months in total and, you know, there was, a lot of it was about me and about my journey, about my recovery but, you know, we kind of forget about the wife at home, trying to keep the house going, you know, loss of income, raising three children on her own and everything that goes with that but Backup supported her through mentoring, they supported her through family days, you know, and such an invaluable tool is being able to lean on people who have that lived experience and, you know, I know you touched on it earlier about having everybody at Backup’s got an involvement with spinal cord injuries, like everybody has got an involvement in a spinal cord injury, whether that be having a spinal cord injury or a family member or a sibling or a dad or a granddad or any family member of a spinal cord injury, so everybody has got an input and, you know, it's supported my wife through everything, you know, it's incredible. | ||
| James (11:44) | It's great you picked up that family stuff because, you know, their lives have changed in a moment as well, haven't they? And in some ways they have an extra challenge because you don't remember that early bit and that was clearly really, really traumatic for them and they have a long period of kind of uncertainty about what might happen in the future, so it's great to hear that there's that support for those family members, you know, children, suddenly their parent has completely changed. I'd wonder, do Backup work with children with injuries or is it just for adults? | ||
| Mark (12:17) | No, we have a wonderful CYP team, children and young person team, who will support them through, because obviously their journey is very different to those of an adult, you know, they're finding their, you know, their identity, as it were, you know, for many and it's challenging enough being a young person and growing up, but then, you know, whether they've been born with a spinal cord injury or they've, you know, got it from one of the many ways of getting it, to then having to find their identity again. So, yeah, we've got an excellent CYP team, a few name-drops, Maisie and Kirsty, really, really good. They'll support through everything in terms of, you know, support with education and going back to school and like the legislation around that.We try to do every three months, or four months, we have a YAG, which is a young person advisory group, where we get them together, it's all somehow we shape our services best to suit them. So, yeah, massively involved with the children and young person and, you know, you obviously have to and also the family members, you know, it's very hard for parents to see their children in that, you know, in that. | ||
| James (13:36) | Yeah, of course, parents might have to give up work, they might have to suddenly navigate the awful benefits system that they've never touched before. There's so much stuff to learn, isn't there, and I guess the role of organisations like yours is to help people on that journey, you know, you're not alone, we can help kind of hold your hand and walk you through this new world that's kind of been thrust on you in many cases. | ||
| Mark (14:01) | Of course, and it's, you know, and again, it's, you know, we put people into, like, family members in touch with other family members and, you know, there's the mentoring for them as well and, you know, the spine units that are available for young people are few and far between. You know, I have the luxury of working in Stoke Mandeville as the outreach worker who do have a spinal unit for young people and it was, it's probably one of the toughest parts of the role, seeing young people and having kids myself and, you know, knowing that, you know, a bad accident, a trampoline park could put them in a similar position to me. So, it's hard but then, you know, it's a driving force for the whole team, not just me, but for the whole of Backup that we will support them through everything and do what we can, whether that be through our services or signposting them to other charities that are going to help them out.Yeah, it's a massive driving force. | ||
| James (14:58) | 40 years, what about the next 40 years? Do you think, are we going to see a real change and improvement in people's recovery from spinal injury? Is there science happening to help that or is it really just about changing the society, I guess, changing the way that, so people don't park on pavements and do stupid things like that and we make it easier for people recovering from spinal injury?Are we going to see both of those things? What do you reckon, 40 years time Mark, where are we going to be? | ||
| Mark (15:24) | 40 years time mark, I would love to say yes, there will be a, almost like a cure for a spinal cord injury or at least a reduction of symptoms in spinal cord injury and I know there's talks of like AI speeding up that process and not necessarily using chat GPT but, you know, the levels of AI and the ability to process things a lot quicker than the human brain might speed things up, but for now I think it's all about sort of educating those with a spinal cord injury and getting them to a point where they can live the most fulfilling life they can but also educating society on how it can be easy and, you know, because the problem is with accessibility is it might look like it's accessible but not everybody can access it and that's, you know, that's one of the biggest blockades for people with disabilities I suppose and I notice it, you know, I'm very capable in my wheelchair but, you know, I still have problems getting into my favourite coffee shop or I look at houses and, you know, just seeing houses with steps and I think, oh I can't move into that house, I could never live in that house and I know there's, you know, it's a lot different now and houses, new house builds and that are better but, yeah, building on the infrastructure that's already in place, repairing the infrastructure that's already in place would go a long way to making life a lot easier for people with disabilities of all kinds. | ||
| James (16:54) | Yeah, absolutely and improve that kind of accessibility. Well, listen, I'm going to put a bunch of links to some of the things that we've talked about especially Backup underneath this podcast so if you're listening to this and you want to know more about them just click on those links and go through. Mark, if people want to access these support services, is that what to do?Just sort of go through the website and send you a message? How do people reach out? | ||
| Mark (17:16) | Yeah, so there's plenty of ways to do it. You can go straight to the website, there's referrals, referral forms on there for people with a spinal cord injury and for family members. They go through to different places, you know, there's referrals for courses.Some of the courses that we offer are sort of residential courses where we'll take people to Edinburgh and teach them how to get around Edinburgh fully supported. We'll teach them how to get around Edinburgh, we'll go up to the castle and Edinburgh is not renowned for being a very wheelchair friendly place so if you can get around Edinburgh or cities like that then you can get around anywhere. So, you know, you can go on to the website there's a full list of courses with a big calendar of what we offer, how to get involved is all on there and yeah, and you know, happily drop my email at the bottom of the podcast and you can reach out to me directly. | ||
| James (18:11) | Will do, thanks ever so much Mark. So, you heard it here first folks, there's loads of information, you can get some support if you need it but also you can support back up yourself I'm sure by joining in. Well Mark, thanks ever so much for joining me on the chat today, it's been great to talk to you. | ||
| Mark (18:29) | Amazing, thank you for having me. | ||
| James (18:30) | If you enjoyed listening to this podcast there are many more episodes, look for them on your favourite podcast supplier and stay in touch. Thanks for listening. |
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