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

Dr. Rita Roy: 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 By Toit 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 Thornberg, founder of the Kata Equina 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 Kata Aquinas syndrome caused by a herniated disc at the L five S one level in her lower back. Although she ultimately underwent a discectomy and laminectomy, a delay in surgery resulted in permanent neurological damage and lifelong kada 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 patients, raises awareness about Kata 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. Clear. 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? 

Claire Thornber: Hi. Of course I can. Um, 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 mom to two daughters, we were actually cleaning about 30 different houses and offices every week and burning through five 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, um, I received from a physical assault from a previous partner.  

Dr. Rita Roy: Claire, thank you for sharing that. And I’m sorry that you went through something traumatic, like, 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. 

Um, listening to you, it sounds like you are almost always in motion.  

Claire Thornber: Um, yes. Re so I read, I managed to leave the, um, abusive relationship and move forward in my, with my life. I developed a resilience and discovered that 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 way 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 a hundred miles an hour. 

Yes.  

Dr. Rita Roy: 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?  

Claire Thornber: Um, I really, I developed some really severe symptoms from a herniated disc at my L five S one, which is quite the most common area for Coquina syndrome, and things progressed really quickly. 

Um, I was admit, I was admitted to the hospital, um, as an emergency case, finally having 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 sold 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 experience experiencing alternating sciatica in both legs, altered sensation to my genitals, and that felt like burnt skin, a scolded 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, it felt like an explosion. Um, I was struck by so much pain that 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’ve felt right. 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, when my fingers was bizarre, felt bizarre, but indicated something really, really serious.  

Dr. Rita Roy: 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, and I wanna 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, 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 in any of the, the previous back pain that you’d had before. 

Claire Thornber: Um, I think when we have chronic back pain, we get used to levels of pain and we tolerate it, don’t we? Yeah. 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, a e department to our hospital, which took some, a few visits to get there, I went, had to, needed to go to the toilet. 

So I got up to go to the toilet, and when I got up from sitting down, I realized. 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 Spinal surgery Center, I went in an ambulance and sort of the thing that stood out to me was every single grain 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 si symptoms and the numbness were at the back of my mind at that point. 

Then,  

Dr. Rita Roy: yeah. 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, that this delay might have a lasting consequence for you?  

Claire Thornber: Oh, when I was waiting to, to be transferred and that whole period, um, been. Uff, um, consultants in the NE department having numerous, um, physical examinations and neurological tests, which involved a prick test on the back of the legs by several members of staff. 

I 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 spinal surgery center and after I’d had the discectomy and the laminectomy, spinal surgery. It didn’t take me too long, probably when I woke up the next day to realize something was still amiss. Um, the staff in hospital avoided discussing things with my condition that actually got me initially very suspicious. 

So the, 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 SCIA sciatica had gone. 

That was overwhelmingly re 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 7-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.  

Dr. Rita Roy: Wow.  

Claire Thornber: 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, all the questions needs to be asked.  

Dr. Rita Roy: Yeah.  

Claire Thornber: The numbers were still there and the delay related, um, resulted, sorry, in permanent neurological damage and life, one quarter aquina syndrome, which is known as CES as well. 

Um, nobody at the time told me the damage might be permanent. Nobody mentioned that at all. The only thing I was told was that I’d have to wait and see for two years, um, before they could decide that things were going to get better or not. Funnily enough, my biggest concern at that time. Getting rid of the back pain, the sciatic pain, it was a numbness. 

There was no, no, um, acknowledgement that I brought her bowel problem function as a sort of independent, happy, go lucky, vibrant woman who was 39 with two children living her best life. That was, I just felt stripped of my identity, so I really struggled with that.  

Dr. Rita Roy: Yeah, Claire, that is so, so hard and the uncertainty must have been just incredibly difficult to have to, to sit with that information. 

Mm-hmm. And, um, and especially without having clear answers to what you know was 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 gotta 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. Right.  

Claire Thornber: I think, I think I’ll go right back to the beginning really. 

So I was discharged from hospital. Um, I’d had, didn’t have a bladder scam. Nobody was aware, was in complete retention of bladder and bowels. So I’d spent seven days at home trying to enter my bladder. So about day seven, I had a pelvic flu prolapse. So I, I then rung the hospital, said I had to go for the 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 ’cause she’s finished her shift and I had to teach myself ISC, which is intermittent self catheterization. 

So. That was, 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 years to a lady about trans transanal irrigation system. So that gave me control of my bladder 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 body, so I was able to open it and close it, but I couldn’t empty properly, so I had to catheterize. 

That’s about, that’s about another three or four years, but I don’t do that anymore. I still use 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 set watching Dallas reruns on a box set. And so bla blamed Dallas, but I did put a lot weight on, but I obviously moving about with painful and things. So another thing, body image and all that kind of thing is a, is a big thing. 

And  

Dr. Rita Roy: meanwhile you’ve  

Claire Thornber: got two  

Dr. Rita Roy: young daughters that you’re trying to, you know, get  

Claire Thornber: to  

Dr. Rita Roy: a happy childhood while you’re struggling.  

Claire Thornber: Exactly. Try and be normal for me. Right,  

Dr. Rita Roy: right.  

Claire Thornber: Part of the problem when you have a cor aquina syndrome when you’re first diagnosed is you get leg cramps and 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. Leg cramps have gone and the neuropathic pain has never changed. 

So the neuropathic pain is a feeling. I’ve been 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’s gets interferes 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. 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 ton of paint and cut my toe open on my toe. I never felt that. So that, that was a massive change for me. So what that did for me, it restored my confidence walking out and about because it was easy not to trip over uneven ground and things outside and door threshes. 

So that’s, that’s been a massive game for me, just getting the feeling back in my feet.  

Dr. Rita Roy: Every success you can take, you’ve gotta take that victory left.  

Claire Thornber: Yeah, exactly. Yeah. Yeah.  

Dr. Rita Roy: Right. Oh my goodness. Well, Claire, hearing how long and gradual your recovery has been and everything you’ve had to push through it, it, 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 have you adapted your life?  

Claire Thornber: Well, as I said, pain and fatigue are probably the most limited parts of my condition now. 

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 telly watching Netflix or something. Or I, you know, chilling with some friends. I’m in a coffee. Um. 

I don’t tend to socialize a lot at night. Just lit literally because at nighttime I’m shattered. I’m ready for bed for nine o’clock.  

Dr. Rita Roy: Yeah, well, me too, but you know, that could just be an aging thing.  

Claire Thornber: Yeah. That as well. Yeah. So, um, yeah, I think I’m, I’m, but I’m happy with that, that, you know, that’s, that’s what I desire to do and I’m, I’m happy with that. 

Yeah. Emotional adjustments were massive. I’ve been married and divorced twice in the time since my injury, and I think when we say 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 haven’t told that, that husband about my sexual dysfunction, about those issues, I kept them hidden because I was trying to beat, ’cause he knew me before my injury, so I was trying to hang onto that. Somebody who knew the old Claire. Yeah. Um, but I had to, I, 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 thing and just get on with it. So that was my acceptance. Yeah, getting divorced the last time I think was probably the acceptance.  

Dr. Rita Roy: Yeah.  

Claire Thornber: So, and I feel a lot more chill, chilled. I’m a lot more easygoing now. I don’t, I feel a lot less stress. 

Yeah. So that’s, that’s a good hurdle to get over that. It’s, it’s a nice place to be.  

Dr. Rita Roy: Yeah. You say it like it’s just something that you did, but I know that it was emotionally very difficult. I know  

Claire Thornber: it was horrific at the time. Yeah. Because, you know, we, yeah. There you go. It’s,  

Dr. Rita Roy: 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. Um, and to be able to, I don’t wanna 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?  

Claire Thornber: 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 gonna 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 the voluntary role was, um, working in communications and events. Um, and I, I did a few hours a week. 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. Um, wow. 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. Um, I needed something that would fit around my lifestyle. 

Something that would give me access to toilet, when I needed to go something, the way 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. 

Um, they work for the local councils and also you register your family desk 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, all my whole journey’s been like, um, just, just everything rolls onto something else which rolls onto something else. 

A really, yeah, a really natural one.  

Dr. Rita Roy: But it’s, you know, it’s interesting. Um, we, we, I don’t 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 are 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. Um, 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. 

Claire Thornber: Absolutely. Um, so obviously. I’ve been doing it for some period of time now it’s the 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 all 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 back. 

It sounds strange, but I’d always been living with this perhaps 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 where 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 that it was a rare condition. So much so they were only person living with it in the country, and it was just so many people out there sort of. 

Isolated on their own. Um, 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 Aquinas in Rome. We have. Two people who opened SHO shops next door to each other with Cord Aquina syndrome. 

Dr. Rita Roy: Wow.  

Claire Thornber: And two ladies who met in a supermarket bending down for the same shelf and nobody could reach because they both had cord Aquina syndrome. So it’s a much more common than people say. So I wanted to build a community and get some people somewhere where people felt safe. Really?  

Dr. Rita Roy: Yeah.  

Claire Thornber: And heard. 

Unheard absolute. Yeah. And a And giving them the tools to be heard. Yeah, yeah. Helping them to become their own advocates. Really for my own case, through the delays we mentioned, I started 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 30 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. 

Um, 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 Coquina syndrome patients, it’s made him worse for the lack of awareness of the condition, not just amongst healthcare professionals, um, but also about the public. 

So the public are unaware. They have a coquina. We all have one. Nobody knows about it. So we do a lot of education now, um, for the public as well, which healthcare professionals. But there are, um, people that I work with, healthcare professionals, consultants, researchers who were all working really hard to change outcomes for chord aquina syndrome perhaps three years ago. 

I think it was three or four years ago. In the uk they learn for the, for first time, um, a national Cord Aquina syndrome pathway.  

Dr. Rita Roy: Wow.  

Claire Thornber: So there hadn’t been one since then. My goodness,  

Dr. Rita Roy: Sarah. So  

Claire Thornber: emergency admissions are improving.  

Dr. Rita Roy: Yeah.  

Claire Thornber: But we have a lot of work to do around the rehabilitation side, and it’s not flawless. 

The pathway isn’t flawless. Right. But it’s, it’s, it’s, it’s obviously a starting point, isn’t it?  

Dr. Rita Roy: Yes.  

Claire Thornber: So that, that, sure.  

Dr. Rita Roy: That’s  

Claire Thornber: 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 healthcare professionals. 

So.  

Dr. Rita Roy: Important. That’s fantastic. Yeah. And that’s what this is all about, right? We want to, we want to raise our voices to become partners in healthcare delivery. Absolutely. 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. It’s absolutely, I  

Claire Thornber: Amazing. Well, we, we, I’ll tell you something. Be so what we, we did, um, A BBC news. 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. He was a legal correspondent. Um, and I, 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. 

Um, two weeks later when he came back from his holiday, 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, for Aquina syndrome in the uk and a gentleman called John Ray, who’s a UR urologist, estimated that to be between 150 and 200 million pounds per year in the uk  

Dr. Rita Roy: Wow. 

Claire Thornber: For claims. So that was a catalyst for the Health and Safety Investigation Board to expand their investigation to Aquina Syndrome. So even our campaigning with the national news led to the recommendation for the development pathway. So we, as a tiny charity. As, as, as a group of patients with lived experience, we have made some big inroads in our country to elevate the sort of the, the problem and try to get that tackled. 

Dr. Rita Roy: 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. 

That’s fantastic.  

Claire Thornber: Oh, thank you. But behind me, there’s all the members of our community and we’re, 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, cord aquina 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 Cord Aquinas 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 Cord Requirer app. Um, we did this in partnership with National Spinal Cord Injury Center at Stoke Mandeville, 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. Um, and it’s now available in over 200 languages.  

Dr. Rita Roy: Wow.  

Claire Thornber: And it’s, um, a digital hub for healthcare professionals and patients. So there’s information there for everybody.  

Dr. Rita Roy: Fantastic.  

Claire Thornber: Um, we offer online support group meetings to people. So these are held online for anybody with Cord Aquina syndrome. 

And we have had people join us from America, from Australia, you know, whatever time of day it is, everybody jumps on. Um, 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’re doing educational workshop about managing the condition. Um, 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, um, 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 is stories from survivors of core Aqua Syndrome. And essentially it’s eight patient stories and everybody has had quad aqua syndrome, but overcome it to live their own wonderful life and do incredible things. 

And we wanted to put wow to put that out there. It’s an education tool for healthcare professional professionals. ’cause 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, it’s, it’s to inspire people. Although it’s an, an emotional book, it’s to inspire, say, look, life can be incredible. Just, just, just hang on in there, really.  

Dr. Rita Roy: Yeah. And find your pathway, right? Yeah. Find your pathway there.  

Claire Thornber: Yeah, exactly. Yeah.  

Dr. Rita Roy: Claire, hearing everything that you’ve built outta 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. Um, 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?  

Claire Thornber: It’s changed the way I see my life completely. 

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.

 I think I have a completely different set of values. Material things or cha the right race. Chasing things like that isn’t, doesn’t interest me. Yeah. 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, made 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 we’re not being successful? But I don’t wanna think about that. 

I think, you know, yeah, being successful at it, you feel like there’s a, there’s a been a sacrifice and you know it’s worth our want.  

Dr. Rita Roy: It’s, it’s like in giving you receive, I mean, you get so much out of it, but you’re also creating that.  

Claire Thornber: Yeah.  

Dr. Rita Roy: You know, that, that sort of wheel of abundance where you are giving to create this community. 

Mm. And in that doing so you receive as well. And it’s just, um, that’s a really beautiful thing.  

Claire Thornber: Yeah. It’s, it’s, it’s it privilege. It really is. I think finding solutions for others that weren’t available to me at the time has helped me accept my chain of 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  

Dr. Rita Roy: Wow. 

Claire Thornber: I can help. You know? It’s that. That’s, that’s amazing. So Claire to do that, Claire, you  

Dr. Rita Roy: yourself answer the helpline for the charity.  

Claire Thornber: Yeah. I answer the help, I answer the helpline well, I do schedule calls, so I spend so many monies a week with contacting people back because unfortunately there’s nobody else at the charity with Quin Syndrome, 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. I have a unique insight to it into life. Sure. And that,  

Dr. Rita Roy: that that lived experience, that patient experience mean we have an advocate program here and a lot of people reach out to us and say, I wanna talk to somebody who’s had a. 

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 a, it’s a, it’s a very important part of what we do. And very  

Claire Thornber: healing, isn’t it? Yeah.  

Dr. Rita Roy: Yeah. Our spinal champion community, and it’s the advocacy program. 

Yeah.  

Claire Thornber: I think overriding, 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, and you keep doing it, you’re gonna get there eventually. And I, I really do believe that. Um, so  

Dr. Rita Roy: succinctly you say that so succinctly and so powerfully clear. 

So true.  

Claire Thornber: Mm-hmm. 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, in the opportunity to influence international pathways, to still have those relationships with the people who, who, who were in charge of that, to speak on a, on a equal footing to people, medical professionals at the top of the game is, is, is 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. Every day is a learning curve. Every day I, I’m still obviously learning a million things, and with that come as I grow as a person, I also, my accept acceptance grows as well. So I get more comfortable in myself, in my, in my own person. I would say  

Dr. Rita Roy: Claire, that’s just absolutely amazing. Um, I just, 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?  

Claire Thornber: Okay, so we are, we have a website and that is www champions charity.org.uk. Okay. So we have a website there. 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 quarter acquirer 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.  

Dr. Rita Roy: 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?  

Claire Thornber: So we set up, um, a clinical psychology service. So we have six therapists. We have CBT therapist, clinical psychologist, Dr. Sally who oversees it. We have, and just  

Dr. Rita Roy: to let our audience know, CBT is cognitive Behavioral therapist. 

Claire Thornber: Sorry. Yeah, it’s, yeah.  

Dr. Rita Roy: A psych. Yes. It’s a kind of counseling. Um, yeah.  

Claire Thornber: Gosh, I’m turning into acronyms, aren’t I?  

Dr. Rita Roy: You’re becoming a medical person.  

Claire Thornber: Yeah, and we have counselors as well, so we have a tiered psychology service as well. Nice. 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. Yeah. That’s remarkable.  

Dr. Rita Roy: 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, um, 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. 

Um, what an incredible journey. What an incredible story. Um, any closing comments, pearls, words of wisdom for our audience?  

Claire Thornber: Um, 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 gonna be as bad as you think they’re gonna be there. There’s, if it’s an adjustment or if it’ll 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 partway through, through that journey themselves, just believe in 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.  

Dr. Rita Roy: Thank you, Claire. Thank you. And just finally in closing, how did you find the National Spine Health Foundation? 

How did you find  

Claire Thornber: it? I was, I was doing some Googling and some research, and that’s how I came across it.  

Dr. Rita Roy: 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, share, and share. So thank you.  

Claire Thornber: And I would say if there’s anything you’ve got, um, RT. 25% of our group is American. So you’ve got anything you’d like to I to share? Group. I’d be happy to do information. 

You involved your side or people are always really keen to get involved and be heard, so I’m happy Share that with the group and things.  

Dr. Rita Roy: Great. Thank you for that, Claire.  

Claire Thornber: Thank you.  

Dr. Rita Roy: 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 KAA Champions charity is helping countless people feel seen, supported, and informed, and ultimately will result in better care. 

At the National Spine Health Foundation, we believe deeply in providing hope through shared stories and trusted education. Billions 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 spine health org. 

Thank you.