From Patient to Founder: Building a Movement After Cauda Equina Syndrome

After a delayed diagnosis of cauda equina syndrome left her with permanent neurological damage, Claire Thornber faced a life forever changed. Once a busy business owner and mother of two, she suddenly found herself navigating chronic pain, mobility challenges, and the emotional toll of an invisible disability.

In this episode of Get Back to It, Claire shares her powerful journey from patient to advocate, discussing the warning signs of cauda equina syndrome, the importance of timely diagnosis, and the long road to recovery. She also shares how her personal experience inspired her to found Cauda Equina Champions Charity, an organization that now provides education, support, and advocacy for thousands of patients around the world.

Join Dr. Rita Roy and Claire for an inspiring conversation about resilience, finding purpose after adversity, and how one person's voice can spark meaningful change for an entire patient community.

Visit spinehealth.org/podcasts for more stories and spine health resources.

Learn more about the Cauda Equina Champions Charity: https://www.championscharity.org.uk/

Transcript

SPEAKER_01 0:01

Hi everyone, I'm Dr. Rita Roy, CEO of the National Spine Health Foundation, and host of the Get Back to It podcast. Here we share real stories of healing and recovery from people who overcame spine problems and returned to the lives they love. These success stories are powerful, inspiring, and sometimes unbelievable. Let's dive in. At the Give Back to It Podcast, our mission is to share the stories of spinal champions, individuals navigating spine conditions while striving for better quality of life. Today's guest is Claire Thornburg, founder of the Cata Aquina Champions Charity in the United Kingdom. Claire was living a busy and active life at age 39, running her own cleaning business, when a sudden escalation of symptoms led to emergency hospital admission for Cata Aquinas syndrome caused by a herniated disc at the L5S1 level in her lower back. Although she ultimately underwent a dysquectomy and laminectomy, a delay in surgery resulted in permanent neurological damage and lifelong Cata Aquinas syndrome. Recovery was slow and complex with years of adaptation, persistent pain, and fatigue. But Claire transformed that experience into purpose. Today she leads a charity that advocates for patience, raises awareness about Cata Aquinas syndrome, and supports thousands of people across 20 different countries navigating life after serious spinal injury. Claire's story is one of resilience, advocacy, and turning a life-changing diagnosis into a mission that helps thousands of others. Claire, let's start before your spinal injury. You were running your own cleaning business and living a very active life. Can you describe what your day-to-day life looked like before everything changed?

SPEAKER_00 2:03

Hi, Rita. Of course I can. At the time I was incredibly busy and very physically active. So running my business really meant long days on my feet, managing clients and staff, and juggling everything that comes with being self-employed, as well as being a mum to two daughters. We were actually cleaning about 30 different houses and offices every week and burning through vacuum cleaners a year. On reflection, I think that constant, the constant labor-intensive work put a stress on an old injury I had in my lower back from years ago. And that was a back injury that I received from a physical assault from a previous partner.

SPEAKER_01 2:44

Claire, thank you for sharing that. And I'm sorry that you went through something traumatic, like a physical assault. That's not something anyone should have to carry. And the fact that you were dealing with the lasting effects of that injury on top of such a physically demanding life, that that's a lot. And yet you were showing up every day for your business, your clients, and your daughters while carrying all of that with you.

SPEAKER_00 3:18

I managed to leave the um abusive relationship and move forward with my life. I developed a resilience and discovered that I was stronger than I thought, actually. Um, and something that would help me in the future, in a way I was half prepared for what lay ahead. I was enjoying my life, my family, my friends, running a successful business, being independent and being able to provide for my children, having lots of holidays and things like that. And I would say I was a person who lived life at 100 miles an hour, yes.

SPEAKER_01 3:51

Wow. And and then in 2010, things shifted quite suddenly for you. And your your back symptoms really began to escalate. Can you take us back to that time? What was happening and what did that feel like for you, Claire?

SPEAKER_00 4:07

Um, I really I developed some really severe symptoms from a herniated disc at my L5S1, which is quite the most common area for coroquina syndrome, and things progressed really quickly. Um I was admitted to the hospital um as an emergency case, finally have to advocate to be seen properly. Um I'd suffered with lower back pain for about 10 years, and that had recently, probably over a period of two weeks, been getting much, much worse. It was actually so that bad, in fact, that I'd had an x-ray and an MRI scan done in the couple of weeks just before my emergency admission. Um, I was experiencing alternating sciatic in both legs, altered sensation to my genitals, and that felt like burnt skin, a scalded skin, horrendous back pain. And when I look back in time, really, I remember some periods of bladder retention. So I was unaware at the time, but with hindsight, the benefit of hindsight, I can see those things were happening now. I really knew something was seriously wrong when finally one night I turned in my sleep and I felt my back go pop. And if I say pop, that's an understatement, it felt like an explosion. Um, I was struck by so much pain that I wasn't able to breathe. I couldn't move, I was grasped by the pain, I was fixed with it. It was unbelievable. Um, and immediately with that, my buttocks dropped. So they felt like they dropped away from my body, they were very heavy, very dense, and they felt like they actually weren't part of me anymore. With that dense drop came pins and needles that rapidly grew and spread over that area and started to turn into numbness. So the numbness and not being able to feel my own body at the time when I touched it with my fingers was bizarre, felt bizarre, but indicated something really, really serious.

SPEAKER_01 6:02

Claire, thank you for so vividly sharing those symptoms and what that felt like. Um there's there's so much intensity in what you've just described. And I want to go back to that moment that you realized that something was seriously wrong. You know, this this constellation of like sudden, you know, the explosion, these intense symptoms. Um, walk us through what you were experiencing that stood out to you as absolutely alarmingly different than anything you'd experienced in those previous two weeks of the acceleration of pain and any of the previous back pain that you'd had before.

SPEAKER_00 6:44

Um, I think when we have chronic back pain, we get used to levels of pain and we tolerate it, don't we? So, yes, the back pain had come and that was immense and massive, but it probably wasn't the most alarming thing. Um when I was finally admitted to the A and E department at our hospital, which took some a few visits to get there, I went, I did needed to go to the toilet, so I got up to go to the toilet, and when I got up from sitting down, I realised something that wasn't normal for me, that was still passing urine as I stood up. I couldn't feel it running down my legs, and I wasn't aware that it was happening, but it was there on the floor. This got slowly got worse over a few hours to the point that when I was passing urine later on after having a couple of coffees waiting to be seen, it was almost getting impossible to do it now. So it changed from a normal stream to something that was very difficult, and I can only describe that as trying to pass urine through the eye of a needle. It was a really fine stream that that just I thought I couldn't understand what was going on. I couldn't couldn't correlate it, but being a lady, I think you've you know you're more aware of things like that, and I thought this is just bizarre. So I did tell the nurse about that who at the triage. The main thing at the time though was the amount of pain I was in. As I was transferred to the spinal surgery centre, I went in an ambulance, and sort of the thing that stood out to me was every single grain of tarmac on the road I could feel as a vibration as I was transferred, and it was like hitting rocks. That journey was so painful, and it was just a normal smooth tarmac road. And obviously at that point I couldn't think of anything else other than the pain. So the bladder symptoms and the numbness were at the back of my mind at that point then. Yeah.

SPEAKER_01 8:33

Claire, hearing you describe this loss of sensation, pain, fear, it's just incredibly powerful, and and it's honestly quite harrowing. And, you know, we appreciate your your honesty and transparency with these difficult symptoms. Um, you've mentioned being transferred for surgery. During this transfer, you ended up having a delay of about 36 hours before anything was done to help you. Can you help us understand what happened during that waiting time? And when did you begin to realize that this delay might have a lasting consequence for you?

SPEAKER_00 9:14

Oh, when I was waiting to be transferred and that whole period um of being rebuffed by um consultants in the NE and departments, having numerous um physical examinations and neurological tests, which involved a pinprick test on the back of the legs by several members of staff that was done under blankets because everybody thought I was lying, was demeaning, um, I didn't feel believed, and I knew from all these things I've told you about, something was massively wrong. And it was a feeling of vulnerability, really, and hopelessness, and and being at the um mercy of somebody understanding what was happening to me. Um, but I was transferred and I did go to the spinal surgery centre, and after I'd had the dyspectomy, the laminectomy, spinal surgery, it didn't take me too long, probably when I woke up the next day to realise something was still amiss. Um the staff in hospital avoided discussing things with my condition that actually got me initially very suspicious. So they they avoided telling me about my outcome, whether surgery had been a success. Um, I had questions about the numbness, the genital numbness. I couldn't feel anything from the waist down, and I just was not getting answers at all. I spent five days in hospital, my back pain and my sciatica had gone, and that was overwhelmingly a relief. I felt wow, you know, that part of it was successful, I was aware of that, but I still couldn't pass urine without forcing it out. So I was told I had a seven-year-old daughter at home, if you go to the toilet and you can perform and put some urine in that that pan that we're giving you, then you can go home and you know, we'd be able to discharge you to be with your daughter. So I was going to the toilet and I was bending over and forcing urine out and pushing down on my tummy, just so that I could leave the hospital. And nobody had explained to me why or the problems I could be having with the um neurological bladder problem that I had. Wow. So this is all about patient information and patient education and why it's so important that people need this information, and healthcare professionals should have open and honest conversations. And that's really one reason why I'm here is to say, Well, I don't mind talking about it, we should all talk about these things, you know, if if they need to be asked, only questions need to be asked. Yeah, but the numbers were still there, and the delay related um resulted, sorry, in permanent neurological damage and lifelong cordiquina syndrome, which is known as CES as well. Um nobody at the time told me the damage might be permanent, but nobody mentioned that at all. The only thing I was told was that I'd have to wait and see for two years before they could decide that things were going to get better or not. Funnily enough, my biggest concern at that time was to get rid of the back pain, the sciatic pain, was a numbness. There was no no um acknowledgement that I brought about problematic function as a sort of independent, happy, old, lucky, vibrant woman who was 39 with two children, living a best life. That was I just felt stripped of my identity. So I really struggled with that.

SPEAKER_01 12:33

Yeah, Claire. That is so, so hard. And the uncertainty must have been just incredibly difficult to have to sit with that information. And um, and especially without having clear answers to what you know is going on with your body. As you moved into recovery after surgery, what did those early days and months look like as you are sort of, you know, sort of tracking down the time the doctors have said, well, we've got to give this about two years to see what the picture is gonna look like. What changes and improvements occurred over time? I mean, you've mentioned that, you know, that the relief of the sciatic pain and that sort of pain being gone instantly was at least some bit of success, but these neurological symptoms that remained that journey.

SPEAKER_00 13:25

But I think I think I'll go right back to the beginning, really. So I was discharged from hospital. Um, I'd didn't have a bladder scan, nobody was aware of it as a complete retention of bladder and bowels. So I'd spent seven days at home trying to empty my bladder. So about day seven, I had a pelvic prolapse. So I then rung the hospital and said I had to go for pelvic rings and all sorts of things from the doctor, everything had collapsed down there, what's going on? And they said, Well, I think you need to come in for some catheters. It took me six weeks to get catheters and get back to the hospital, and they were left for me in a gift bag by a nurse who'd gone home because she's finished a shift, and I had to teach myself ISC, which is intermittent self-catheterisation. So that was my that was that was the first part of my journey. And then sort of getting to grips with bladder, and then I through the prolapse I'd had to once see a gynecologist, and he was an amazing guy called Simon Hill, and he had just been demonstrated um a transanal irrigation system, and he said, Claire, this this is terrible. I'm going to look after you and help you get everything you need. He said, I'm going to start with this sending you to a lady about transanal transanal irrigation systems. So that gave me control of my blood and my bowels, okay? I was dealing with it, but the sexual function didn't change. Um, so I would say every night for six months I cried myself to sleep. I was on I didn't want to burden my children, I didn't want to burden my family, I didn't want to talk about it. Um, I didn't tell my partner at the time. I internalized everything, but it was literally it was overwhelming about my identity and the loss of that. After six months after I'd started using catheters, I got some control back over my bladder, so I was able to open it and close it, but I couldn't empty properly. So I had to catheterize for perhaps about another three or four years, but I don't do that anymore. I still use the irrigation for the bowels, and that that's fantastic, it's changed my life really, but I don't have to use catheters for the bladder. So for the first 12 months I'd gone from being active and physical, weight gain was a massive problem for me. I think I put three stone on him the first year, and I spent a year on the SETI watching Dallas reruns on a box set, and that's so blame blame Dallas, but I did put a lot of weight on, but I obviously moving about was painful and things. So that another thing, body image and all that kind of thing is a big thing.

SPEAKER_01 16:00

Yeah, and meanwhile, you've got two young daughters that you're trying to you know get to a happy childhood while you're struggling.

SPEAKER_00 16:07

Exactly. Try and be normal for them, yeah. Right, right. Part of the problem when you have a correct quinder syndrome when you're first diagnosed is you get leg cramps in electrical shocks. So I used to get terrible leg cramps that would grip you, and my toes would curl all sorts of different ways and bend and twist, and they were really painful. They've subsided over the years. Very rarely do I get leg cramp um toe cramps anymore. The leg cramps have gone, and the neuropathic pain has never changed. So the neuropathic pain is a feeling of being pushed around by a telegraph pole, an online activity that gets that gets more angrier and burns more, and that causes fatigue as well. So that's never changed really, and that's probably the most life-limiting thing at the moment. That gets interfered with my life the most now, it's a neuropathic pain. I got the feeling back in my feet after about eight years. So I'd left hospital with numb feet. Um, I couldn't climb stairs at the time, but that that improved, my legs got stronger. Um, and then one day I stood on something sharp at home in the kitchen on the floor, and I thought, I actually felt that, I can't believe it. But when I left hospital, I dropped a tin of paint and cut my toe open on my toe, and I never felt that. So that that was a massive change for me. So what that did for me restored my confidence walking out and about because it was easier not to trip over uneven ground and things outside and door threshers. So that's that's been a massive game for me, just getting the feeling back on my feet.

SPEAKER_01 17:33

Every success you can take, you've got to take that. Exactly, yeah. Yeah. Right. Oh my goodness. Well, Claire, hearing how long and gradual your recovery has been and everything you've had to push through, it does really speak to your strength and your resilience. I mean, I I feel like I'm sugarcoating it to say it in that way because there just are no words to to really fully articulate just how phenomenally you know difficult it is to push ahead um given what you were feeling with your body and your body you know failing you in in these ways. And you know, it's uh it's it's it's just really it's remarkable. And and so, you know, sort of coming back to your life now, um, how does your day-to-day life look for you now? And um, and how how are you managing you know residual pain, um, fatigue that may still impact you? And and how have you adapted your life?

SPEAKER_00 18:37

Well, as I said, pain and fatigue are probably the most limited limited parts of my condition now. Um, and 15 years down the line, I've been able to adjust to dealing with those. And that's that can be a constant change depending on the weather, on activities, what um what you're doing. Um, and a lot of that is hidden. So the pain's hidden, the fatigue's hidden, and I do trade time on energy. So going to work or running the charity for me, meeting people at events is where all my energy goes. But I enjoy that, I get a lot of self-esteem from doing that. And when I do go home and at weekends, you'll probably find me back in front of the tele watching Netflix or something, or you know, chilling with some friends, having a coffee. Um, I don't tend to socialise a lot at night just literally because at night time I'm shattered, I'm ready for bed for nine o'clock. Yeah, well, me too, but you know, that could just be an aging thing. Yeah, that as well, yeah. So um, yeah, I think I'm but I'm happy with that. That you know, that's that's what I desired to do, and I'm I'm happy with that. The emotional adjustments were massive. I'd been married and divorced twice in the time since my injury. And I think when you were saying doing all these things after your injury, for me that was denial. I was in a state of massive denial, and I was doing everything but deal with what had happened. So by the time my second divorce came, I actually realized I'd have to face this head on. I hadn't told that husband about my sexual dysfunction, about those issues. I kept them hidden because I was trying to be because he knew me before my injury, so I was trying to hang on to that, somebody who knew the old Claire.

SPEAKER_01 20:17

Yeah.

SPEAKER_00 20:17

Um, but I had to I had by then eight years later, I had to um I had to actually accept it. You've got to deal with this now. You know, put your big pants on this saying and just get on with it. So that was my acceptance. Getting divorced the last time, I think, was probably the acceptance.

SPEAKER_01 20:33

Yeah.

SPEAKER_00 20:34

So and I feel a lot more chill chilled, I'm a lot more easygoing now. I don't I feel a lot more stressed. Yeah, so that's that's a good hurdle to get over that. It's it's a nice place to be.

SPEAKER_01 20:44

Yeah. You say it like it's just something that you did, but I know that it was emotionally very difficult. I know it was horrific at the time, yeah. Because you know, we but there you go. It's yeah. And you know what's remarkable as as we're talking here, Claire. I I'm I am looking at you on a screen, and our listeners are just going to be listening, but I see a vibrant, beautiful lady who you would never know in a million years has gone through what you've been through and is continuing to deal with some of the ramifications of that. You would never know that. And and again, that is just a testament to your resilience, your grit, your desire to live your best life, whatever that looks like. And finding that path, um, it's it's really just amazing, Claire. And when you talk about, you know, the creating the charity and and and and finding others who are are walking a similar path as yours, that's really what this is all about, right? Is finding that connection to feel not alone and to be able to, I don't want to say commiserate. It's not just complaining all the time, but it's really problem solving, right? It's like, how do I get back to doing the things that I want to do. I may not be able to do it fully, but is there a way I can do part of it? And so talk to us about um what your what your professional life is like now. Are you are you able to go back to your business or what what does that picture look like for you?

SPEAKER_00 22:17

Oh okay so I think it took me about 12 months after after surgery of sitting at home and the Dallas box set had run out to think about you know what am I going to do now? And I decided to go and do some voluntary work. So I volunteered for the Samaritans on a call line and I also volunteered um at a children's charity. So that voluntary role was um working in communications and events and I I did a few hours a week but I absolutely loved the job. I got involved with some really good stuff um and it felt I felt normal and I felt actually quite empowered to be good at something even though it was at that time. So that really helped me. And doing that job realizing I couldn't go back to the cleaning business which I'd had to sell off I needed something that would fit around my lifestyle something that would give me access to toilet when I needed to go something where I'd be able to stand up and sit down and alleviate the pain just to get through the day something part-time and I fell into a job really which was that of a deputy registrar. So in our country they're the people that you take your babies to when you're birth registered and they work for the local councils and also you register your family desks there and things like that. So I really enjoyed working with the public and I did find a passion there for helping people in difficult times. So it was it is all my whole journey has been like um just just everything rolled on to something else which rolls onto something else a really a really natural one.

SPEAKER_01 23:49

But it's you know it's interesting um we we I think we've talked about this or but as I'm reflecting in our discussion here even your cleaning business you have a servant's heart and I think that is what has driven you forward. And you think about a cleaning business that's that is a service business. You're helping people get through life right I mean when you think about it from that standpoint it is it is a um you know that was a career where you were in very much a giving role in what you were doing with with that cleaning business and and and helping people get through and manage their lives with their homes. And you sort of translate that that sort of giving part of you now into giving back and really drawing your energy as they say when you give you receive and um you know that's um that's just such a beautiful part of your story Claire. And so let's let's talk a little bit about um moving then into um starting the Kata Aquina Champions charity.

SPEAKER_00 24:53

Absolutely um so obviously I've been doing it for some period of time now. It's a work that I really value takes up all of my energy but it gives me um a strong purpose sense of purpose um and it's probably born from the frustration of my own journey and the frustration that nobody was tackling it really. I've met other people in an American support group there was a huge vacuum of need to start the charity there was nothing available to anybody here in our country I didn't want anybody to experience the same thing same things that I had and being a problem solver by nature really I just I had this it was it was an overwhelming responsibility I felt when my when I injured my bike it sounds strange but I'd always been living with this past high energy person thinking there's something coming. I know I'm on borrowed time there's something coming I can't explain it and then when that happened I thought Eureka this is that moment this is when my life changes and I really felt that was it. So I almost had a calling to the role as well if I absolutely really did. I felt it was my responsibility I wanted really to offer people support so they didn't know they weren't alone. Everybody thought it was a rare condition so much so they were the only person living with it in the country and it it was just so many people out there sort of isolated on their own. I wanted them to get the answers to the questions that I couldn't get the answers to it's funny when I speak to people sometimes we're all told it's a really rare condition but we have four people in one street living in Wales with cordialquina syndrome. We have two people who opened shops next door to each other with cordialquina syndrome and two ladies who met in a supermarket bending down for the same shelf and nobody could reach because they both had cordialquina syndrome so it's a much more common than people say. So I wanted to build a community and get somebody people somewhere where people felt safe really yeah and heard safe and heard out absolutely yeah and giving them the tools to be heard yeah helping them to become their own advocates really. For my own case through the delays we mentioned I sorted a clinical negligence claim um I found out which was successful at the end of that there were 13 different counts of negligence which were 13 missed opportunities to change my outcome but speaking to the legal team and hearing their insight and things it was a steep learning curve for me and it opened my eyes really to the reality of public healthcare in the UK which since then has got worse. They were talking perhaps you know 15 years ago it's significantly deteriorated since then. And the NHS is a system that's underfunded and stretched beyond its capabilities very sadly. So we're navigating that trying to improve outcomes for patients it's tough. For Cordoquina syndrome patients it's made even worse through the lack of awareness of the condition not just amongst healthcare professionals but also about the public. So the public are unaware they have a cordial and we all have one nobody knows about it. So we do a lot of education now for the public as well and much healthcare professionals. But there are um people that I work with healthcare professionals, consultants, researchers who are all working really hard to change outcomes for cordiana syndrome. Perhaps three years ago I think it was three or four years ago in the UK they launched for the four first time a national cordiquina syndrome pathway. Wow so there hadn't been one since then so emergency admissions are improving. Yeah but we have a lot of work to do around the rehabilitation side and it's not flawless the pathway isn't flawless but it's it's it's it's obviously a starting point isn't it? Yes so that's sure that's something fantastic that's been achieved um I was invited to be a stakeholder on that pathway so I contributed and some other members from a charity contributed to that with the healthcare professionals.

SPEAKER_01 29:04

So that was important right we want to we want to raise our voices to become partners in healthcare delivery. You know it's not about it's not about um you know the legal you know pathways but sometimes it takes that to raise the awareness to say this isn't right and we're here to fix it. What can we do to solve the problem? And it's just it's remarkable what you've been able to do Claire.

SPEAKER_00 29:30

It's absolutely impressive I'll tell you something B so what we we did um a BBC news report. So I'd been to a lady's um empowerment event and I met a journalist and I said I need to tell this story and she said to me well I've got a colleague and a guy called Clive Coleman a journalist who was a legal correspondent and I approached she said if you get him on Twitter he'll do your story for you I'm sure he will Clive this is just up his street so I did get in touch with Clive and I sent him a message on Twitter and he went on holiday and two weeks later when he came back from his holiday he covered the story. Now we'll talk about the cost of litigation driving changes in healthcare it was for the first time that he ever mentioned the cost of litigation for an for a cordial crin syndrome in the UK and a gentleman called John Raynard who's a urologist estimated that to be between 150 and 200 million pounds per year in the UK for claims. So that was a catalyst for the Health and Safety Investigation Board to expand their investigations to cordial crinous syndrome so even our campaigning with the national news led to the recommendation for the development of the pathway. So we've as a tiny charity as a as a group of patients with live experience we have made some big inroads in our country to elevate the sort of the the problem and try to get that tackled.

SPEAKER_01 30:51

I mean Claire that is just absolutely the most beautiful example of taking a hardship and turning it into something positive moving forward and I'm just absolutely honored and blown away and inspired by you and and what you've done and what you've led. It's just it's just amazing congratulations it's fantastic.

SPEAKER_00 31:18

Oh thank you but behind me there's all the members of our community and what we're constantly in touch and it's it's a collective voice really you know it's it's everybody contributes to everything. The challenges of um cordiquina syndrome are real but so is the difference we're making so for me helping others navigate this condition has been incredibly incredibly meaningful. I'm proud to say the charity runs the only bespoke clinical psychology therapy service for cordiquina syndrome patients anywhere so proud of the work we do to help people after injury to adjust to their condition. We've also developed the Cordoquiner app we did this in partnership with National Spinal Cord Injury Centre at Stoke Manderville which and that's a digital hub of information. So we identified we did a survey with 379 members they all told us what they needed what they didn't know what they wanted to know and that information information was taken and developed into the app and it's now available in over 200 languages and it's um a digital hub for healthcare professionals and patients so there's information there for everybody. Fantastic um we offer online support group meetings to people so these are held online for anybody with cordial requiring syndrome and we have had people join us from America from Australia you know whatever time of day it is everybody jumps on and those are monthly meeting where everybody gets a chance to to talk to others when perhaps you can't meet people face to face. We also offer residential workshops around the country so those are held regionally we have a fantastic social event the night before we all have drinks and a meal and the next day we do an educational workshop about managing the condition and we get healthcare professionals to come and give presentations and things about the newest information. We're busy educating student doctors so we work with Oxford University um Aston Medical to train student doctors about the lived experience and that's part of the core syllabus now so that's a really important piece of work and we wrote a book called The Lost Tribe and it's the lost tribe which are stories from survivors of core aquina syndrome and essentially it's eight patient stories and everybody has had core aquina syndrome but overcome it to live their own wonderful life and do incredible things. And we wanted to put to put that out there it's an education tool for healthcare professional professionals because it goes through the onset of this condition but it also demonstrates to patients even though I was a world champion power lifter or an international show jumper I'm now living my best life so it is is to inspire people although it's an emotional book is to inspire say look life can be incredible just just just hang on in there really yeah and find your pathway right find your pathway there.

SPEAKER_01 34:09

Exactly yeah Claire hearing everything that you've built out of such a difficult experience to help others is just so incredibly powerful. And again I feel like I can't even find the words to express how amazing it is what you've done with your life. When you look back on your journey from where it began to the impact that you are making now how has this changed the way you see your life into your future it's changed the way I see my life completely.

SPEAKER_00 34:43

It changed well changed my life plans it's definitely changed my relationships and my priorities so I kind of it's kind of taking off the sunglasses really and seeing what was important in life if I got to describe it it showed me a new purpose and that was something I never expected and I had two I have two daughters one is 10 years older than the other so when I was injured my oldest daughter was 17 youngest was seven but I'd been working all the time so I I I had 10 years at home with my youngest daughter essentially bringing her up being a hands on mum as much as working part time but that was a that was a privilege something that I hadn't been able to do with the older daughter so that was definitely a really nice thing to go alignment there little babies 100% so it's I really I think I have a completely different set of values material things or che the rat race chasing things like that isn't doesn't interest me at all really I wish everybody was more community minded and the world was more community minded. I think I've got a lot from it personally it's it's kept me going it's kept me sane it's kept it's kept my self-esteem up and it's helped me make sense of what happened to me. So it's given me that acceptance being happy but I think oh what where would I be if it would not be successful but I don't want to think about that. I think you know being successful at it you feel like there's a there's a bit of a sacrifice and you know it's worthwhile one.

SPEAKER_01 36:15

It's it's like in giving you receive I mean you get so much out of it but you're also creating that yeah you know that that sort of wheel of abundance where you are giving to create this community. And in that doing so you receive as well and it's just um that's a really beautiful thing.

SPEAKER_00 36:33

Yeah it's it's it's a it's a privilege it really is. I think finding solutions for others that weren't available to me at the time has helped me accept my changed self. I see it happening every day I I answer the helpline and help people navigate things and ring me up and I do it every day and I can help you know it is that that's that's amazing. So Claire you yourself answer the helpline for the charity? Yeah I answer the help I answer the helpline well I do schedule calls so I spend so many monys a week with contacting people back because unfortunately there's nobody else at the charity with cordocrinos and role but people want to speak to somebody with that lived experience. But that gives me a unique insight so I think I've estimated I've probably spoken to 5,000 people personally over the time I've been doing it. But I have a unique insight into it into life with it.

SPEAKER_01 37:26

Oh for sure and that that that lived experience that patient experience I mean we have an advocate program here and a lot of people reach out to us and say I want to talk to somebody who's had this or that or this type of surgery or that type of procedure and and to be able to connect people to someone who's been through something similar is is uh it's a it's a very important part of what we do in the very healing isn't it yeah yeah our spinal champion community and it's the advocate program here.

unknown 37:54

Yeah.

SPEAKER_00 37:55

I think overridingly I think I never knew it before I I am sure now whatever you set your mind to in life you can achieve it. If you can visualize it and you keep doing it you're gonna get there eventually and I I really do believe that.

SPEAKER_01 38:13

So succinctly you say that so succinctly and so powerfully clear so true.

SPEAKER_00 38:22

When I set off at the beginning doing this I I obviously throwing out ideas to people and I was told that nobody NHS will never listen to you. Why would they listen to you and things like that and um but to have to have to have had the infl the opportunity to influence national pathways to still have those relationships with the people who who who are in charge of that to speak on a on a equal footing to people medical professionals at the top of the game is is it's a great feeling to and and they do listen and they do hear you and they do they do take what you say on board um but every day is a learning curve every day I'm still obviously learning a million things and with that come as I grow as a person I also my acceptance grows as well. So I get more comfortable in myself in my in my own person I would say. Claire that's just absolutely amazing. I have just a couple questions here before we we we wrap up and and and one of the questions is that um number one how do people find the charity to connect to so where where is the charity okay so we are we have a website and that is www.championscharity.org.uk okay so we have a website there are self-referral contact forms on there so you can contact us directly we'll arrange to get in touch with you if they download the Code Aquiner app that's available on the App Store or Google Play they can contact us via the the app directly okay uh or we have a helpline too and they can give us a call. Yeah okay that's good to know and um you had mentioned along the way that there could be psychological support for people are you offering that or connecting people to counseling services through your um through your program so we set up um a clinical psychology service so we have six therapists we have cbt therapists clinical psychologist Dr. Sally who oversees it we just to let our audience know CBT is cognitive behavioral therapy sorry yeah it is psychology yes it's a kind of counseling um yeah gosh I'm turning into acronyms aren't I you're becoming a medical person yeah and we have counselors as well so we have a tiered psychology service as well and we've just recently employed an assistant psychologist to collect the data for us to keep it make sure it's robust so that service is growing and we offer that as a free service to people so they don't have to pay for that service it's funded by the charity and that's the core of our work really.

SPEAKER_01 41:10

Yeah that's remarkable well Claire as we wrap up here is there anything you'd like to say in closing to our audience it's this has been such a powerful conversation you've been so open and vulnerable with our audience in terms of talking about your your personal experiences and how that transformed into your desire to really make a change and um the power of what one person can do to make things better for so many others.

SPEAKER_00 41:47

What an incredible journey what an incredible story any closing comments pearls words of wisdom for our audience I think for anybody who is in a situation that I was in um I would say don't give up hope okay don't hold that yourself share share your problems with other people but things will get better they're never they're never going to be as bad as you think they're gonna be that there's if it's an adjustment or if it improvements it gets easier and I think for anybody else who is considering using their own story or perhaps to help other people or is inspired or is part way through through that journey themselves just believing yourself and the power of LinkedIn is amazing. I made so much so many connections on LinkedIn when I was starting out but it's worthwhile and I can just I can recommend it from a personal point of view that um not to give up just keep going thank you Claire and just finally in closing how did you find the National Spine Health Foundation how did you find us I was doing this Googling and some research and that's how I came across you thank you thank you well thank you for finding us and thank you for supporting the work that we are doing we're in a we're in a we're walking a very similar pathway together and um as we expand our ability to reach more people this is how you do it right you just share and share and share. So thank you and I would say if there's anything you've got um Rita information like we're 25% of our group is American so if you've got anything you'd like to I'd like me to share with the group I'd be happy to do that any information you want to send me across or any in anything you want to get them involved at your side or people are always really keen to get involved and be heard so I'm happy to share that with the group and things. Great. Thank you for that Claire thank you.

SPEAKER_01 43:50

Well Claire thank you for sharing your story with such honesty and strength your journey reminds us that even when recovery is complex and ongoing purpose and advocacy can grow from the most difficult circumstances. The work you're doing through the Cata Aquina Champions Charity is helping countless people feel seen, supported and informed and ultimately will result in better careons of people live with spine related pain and conditions and it can feel isolating but you are not alone. To hear more Spinal champion stories and access spine health resources visit us at spinehealth.org. Thank you for listening