Tino interviewed Maddy Warren at TedX 2017 Tunbridge Wells


Tino: So welcome back to Business First TV. My name is Tino coming to you today from TEDx in Tunbridge Wells. This is Maddy Warren. She's absolutely amazing. Hello, Maddy. How are you?
Maddy: I'm good. Thank you.
Tino: You're a speaker aren't you?
Maddy: Yes. I've done it now though.
Tino: You've just done now.
Maddy: I feel really relaxed now.
Tino: Do you not feel totally relaxed, it's all over and done with?
Maddy: Yes.
Tino: That's fantastic.
Maddy: Yes.
Tino: What were you talking about? What was the speaking about]?
Maddy: I was talking about ... Well, actually I'm a returning speaker so I was at the first TEDx two years ago.
Tino: Ooh, twice.
Maddy: Twice. In the first TEDx I spoke about my life on kidney dialysis, so as home dialysis patient and I talked about raising awareness of kidney disease and what dialysis is and the benefits of dialyzing at home and how I wanted to help more patients to achieve that. I also talked about sky diving, 'cause I'm a sky diver, which is my passion.
Tino: Wow. Freak.
Maddy: Yeah. Weirdo, I know. I'm balancing having a chronic health condition with a really mad hobby. So I just gave them update two years later. I've left my job to pursue working in the kidney community, which is following that passion a bit more. Now I'm working in both with medical device firm to help design, they have a better dialysis machine designed for patients to use at home. Also-
Tino: Can you go unplug or not?
Maddy: I don't know if I'm allowed to mention that.
Tino: You can. As long as you can verbalise it you can go unplugged.
Maddy: Absolutely. That Quanta Dialysis Technologies, they're a British company and they're based up in Stratford-upon-Avon. The machine is called the self-care plus and it's really exciting. If you're in the dialysis world it's very exciting.
Tino: So can I say, you guys are great.
Maddy: Yes. They are great. They've been working on this machine for years. I'm a late comer to this so I'm working as a patient advocate with them. The machine is very special. It's really small. It's easy to use. It's designed for patients to use themselves, which really differentiates it from everything else that's out there. It helps people get to home dialysis.
Tino: Let's just tell people what this is about though, 'cause you do dialysis.
Maddy: I've been dialyzing myself for 19 years.
Tino: Wow.
Maddy: I went into kidney failure when I was 14 and I've always dialyzed myself at home. So it's a bit like being a survival expert. Kind of every night you save your own life again. So for me I've grown up with that. It's part of my life. Actually I'm very lucky I dialyzed every single night for a long period of time, so I'm really well. I get loads of hours of treatment. Most patients don't have that opportunity or haven't chosen to do that, so they dialyze three times a week in hospital for four hours at a time, which is a very small amount of treatment compared to what I get. That's tough. When you dialyze like that, you don't feel particularly well. It keeps you alive but it comes with a lot of problems. It takes up all your time. You're not really able to kind of fit much else in if you're spending three days a week at the hospital every single week then that's tough. Home dialysis for me is something that I really want to make sure everyone as well.
Tino: Can everyone do that?
Maddy: Not everyone. I mean there are various factors that might mean you can't but many more people can do it than currently do. So there's a huge group of people who should be offered that opportunity and also need to understand the benefits. 'Cause I think it's, if someone says to you, "By they way you can go home and do this by yourself," your first reaction would probably be, "Absolutely not. I feel I'm very vulnerable. It's a difficult treatment. I don't want to do it." But if somebody told you how much better you could feel if you could do more treatment and more often and more gently and at home at times to suit you and brings it to life for you in that way, then I think patients are more likely to think, "Actually, it's something I would like to choose." So, that's what I'm trying to do, is raise more awareness of that.
Tino: Fantastic. And for the people who're not doing this, what happens? Well, how do they feel? What's happened to their body when they're not self ...
Maddy: So when your kidneys fail, obviously people kind of understand that that means your body can't clear out toxins and waste products anymore and that will kill you within about a week. It's pretty major. But, actually kidney disease is really complex. So the kidneys interact with the bones, the heart, the digestive system, the brain, so when you have kidney disease and you're only dialyzing a few times a week, you're absolutely exhausted all the time.
Memory and concentration is very difficult, so brain function is affected. Pain, bone pain, muscle pain, general aches and pains, there are myriad of complications and dialysis long term affects your heart as well. It's not a nice illness. The thing is people who have it don't look ill. People will look at you and think, "You look fine," and then wondering why aren't you more. It's this constant battle everyday they get up and they think, "I actually just want to go back to sleep but I have to kind of function and try and work and go to treatment and look after my family." Even if you get a kidney transplant, that's not a cure. So you're still taking a heck of a lot of medication. You hopefully will feel great after a transplant. Transplantation is fantastic and it's what people aspire to, but it's not a cure. You could end up back on dialysis at some point if that fails. Transplants don't last forever. Some patients, like me, can't have a transplant, so for me dialysis is forever, which is why I'm so passionate about doing the best possible treatment that I can.
Tino: So, you're clearly working?
Maddy: Mm-hmm (affirmative).
Tino: Okay. You got your full time business?
Maddy: Yes.
Tino: What do you do?
Maddy: Well, I run my business as a consultancy. My previous career was working in HR and in investment banking, in talent development, leadership development, and diversity. So, my consultancy I do consult in that arena so I do work with clients who want to maximise the potential of their teams and develop their managers to become better leaders and want to make their organisations more diverse. Particularly for me I specialise in disability, so helping organisations to recruit more people with disabilities to manage them well and to develop them appropriately. But then I also now quite involved in the kidney world too, so I will work as a patient advisor to Quanta Dialysis Technologies, who I've already mentioned.
Tino: Wow. Do they pay you?
Maddy: Yes, they do.
Tino: Fantastic. Excellent. Good man.
Maddy: I do quite a lot of stuff which is kind of voluntary but peer support for patients and sharing kind of knowledge, and I'm involved in trying to build, well it's the brain child of another gentleman, a social enterprise, which is called Make Someone Smile.
Tino: Wow.
Maddy: Which is want to help patients actually get better information and resources to help them rebuild their lives. That hopefully will be an exciting future project for me.
Tino: Okay. All right. Well, I wish you the best of luck with that.
Maddy: Thank you.
Tino: I think you could do very really well. How do you think today went?
Maddy: Today was awesome.
Tino: Wasn't it, yes?
Maddy: It was great. It's a big audience so I think when you go on stage you think, "Whew. There's a lot of people," but it's a really warm audience. Everyone's friendly. I think the speaker programme is so diverse, it's such a rich array of topics and fascinating, inspiring people. It was really exciting.
Tino: Maddy Warren, thank you so much.
Maddy: Pleasure.
Tino: Guys. Maddy Warren. TEDx. Tunbridge Wells. Thank you.

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