How do you grow as a rare disease charity?

Welcome to the new season of The Rare Disease Podcast for Medics!

We're on season 7 now, how did that happen?!

For the first in the new series, our CEO Lucy and comms manager Emma chat about M4RD's upcoming plans for our Rare Disease Day sock campaign and reminisce over their time at medical school. 

Views, ideas and opinions expressed in this podcast are personal to the individual and Medics4RareDiseases does not accept responsibility for those expressed by guests.

M4RD receives funding from commercial companies which it works independently from. M4RD's Partners and Funders do not accept responsibility for any views expressed in this podcast.

M4RD does not endorse any companies or products that it receives sponsorship from. For more information please see the show notes and www.m4rd.org/sponsors #DareToThinkRare

Transcript

0:07

Hello and welcome to the rare disease podcast for medics. I'm Lucy Mckay and I'm the CEO at Medics for Rare Diseases. We're equipping medical professionals to reduce the diagnostic odyssey and improve the patient experience for those living with rare conditions. This podcast will feature interviews with patients, clinicians, advocates, students, and researchers focusing on rare disease in clinical medicine from all walks of life. So sit back, relax, and if you like what you hear, Follow us to keep up to date with our latest episodes. Thanks everyone and remember to dare to think rare. This is us with the new season of the Rare Disease Podcast for Medics, where we're lifting the hood a little, aren't we, on a on Medics for Rare Diseases, and I think this is lifting the hood quite a lot. Everyone is starting to understand how we live our lives while I live my life, just being told what to do. It's more than that, Lucy. It's more than that. But yeah, it's been a interesting time since. I think the podcast ended probably about May, and a lot has happened since then. Yes. We have a lot going on internally. I think M4RD is obviously in a sort of a really exciting time when we're growing, not just in staff members, but also, you know, in our sort of brand identity and in our missions and goals and things like that. But so it's been sort of a, yeah, I think it's period of growth, isn't it? Over the summer. Yeah, it has been, we've got more ambassadors coming on than ever. Yes. Yes, we're growing in that direction as well. You've been recruiting like Billy O. Only the best people. Now I'm going to have to worry that you're going to get headhunted not only by a pharma company, but some kind of recruitment company. I don't, I don't think, I don't think I'm that good at those things. It's just, you know, when you know that people, when you see people that are telling a story and you think that fits in so well with our ethos and, you know, the way we like to project stories and you think, oh, you know, you'd be brilliant. And then when you go up to them and they're like, actually, I'd really like to be involved. It sort of works out easily. It's an easy recruitment process because it's very natural. And the, definitely the people that I was talking to and, you know, I felt they could have sort of a very, you know, a really stable, long future with M4RD because their values are so aligned to us yeah. So I'm, I'm really excited. I can't wait to meet them all. And I'm, I'm, I want to be involved in their sort of onboarding and everything to make sure that everyone's really happy and makes the most of it. And yeah, there's loads going on, isn't there? Yeah. Yeah, I've just come to the end of you know, I've been on that NatWest accelerator for small, small and medium sized enterprises, SMEs. basically the first, you know, it's a bit like when you're a doctor and you use loads of acronyms it's like that, but within business, I just spent the first few weeks asking people what all these acronyms meant, but we're the only charity represented on this accelerator and it has been just amazing to sort of get the experiences of other entrepreneurs. Cause I now call myself an entrepreneur because I'm on this. Accelerator. Mm! And that then, you know, they still apply. We're a charity, but we are a growing business just because our money, just because our money benefits the public. Well, yeah, but it works as a charity, the charity works as a business, doesn't it? And I think that's one of the things about this charity in particular, because it, you know, Things move fast and it's innovative and, you know, we're not afraid to try new things like going on a NatWest accelerator course for businesses. Yeah, definitely. And I've learned so much. I tried my, you know, our, when we were in Manchester back in July, we did our own little sort of professional development morning, didn't we? Looking into each other's personalities and communication styles. So it's all applicable. You are. I'm a wombat. I was a kangaroo. Did it come as a did quite well, actually. I think we had two kangaroos and two eagles, were they? Or falcons? Yes. And then one wombat. And that was you. And a dolphin. Yeah, I'm the one bat. And, but, with the Ambassador Program, the, the, what I've been put on, on this program with Natwest, so where you, you, it's every other week, and I go to Milton Keynes, and there's there's this amazing coach, Who's, I'm, I know that she'll have another title within NatWest and I can't remember what it is. But Michelle, and she has one to ones with people to establish where they're wanting their business to go, what they want to get from this. And then we get coaching sessions, teaching sessions. We do group taught by group sort of problem solving sessions. I think I like group accelerating sessions. Awesome. And the idea is you, you just get to learn from people completely outside, but have also, you know, no one else is part of a charity. And but you get to learn from their experiences. And I didn't think I realized how much I would have to give to the other entrepreneurs. But then you're quite different if you're the only charity person there. So that's actually, you know, that's, that's a lot to give, isn't it? Because they're all giving something different. Is it very diverse in terms of the businesses that are covered? Not, not hugely. There's a lot of sort of HR coaching and then I guess then things like services, like interior design, and and then also products, certain products. There's a great guy who is who's designed some board games that are just awesome, for example. Board games? Kind of retro now. Yeah, I know. But, you know, for people who love board games, if I opened that cupboard behind me, you know, I wish we had time to play the board games. But and You know what it's like, you sort of say, Oh, I, I work with this charity around rare conditions. And then in the lunchtime, you get half of the cohort come up and go, Oh, actually, I have a rare condition. My friend has a rare condition. And so by the end of the course, all of these people are amazing rare disease advocates because The statistics are true, Emma. Yes. I'm finding that more and more. I feel like, definitely over the past year, the more I talk about my job, you know, even on holiday, and, and, oh, what do you do? Oh, I work in rare diseases. And people say, oh, well, actually, I've got a niece, I've got a nephew. And then, you know, things like the documentary, the Celine Dion documentary that came on. And she's obviously highlighting stiff person syndrome and Colin Farrell talking about age. Colin Farrell has just released something about his son, I think it is. Yes, his son and he did a big interview with People magazine and that came out and they're both, you know, within the space of a month to have those two rare diseases be highlighted by really, really high profile celebrities. I think it just goes to show that, you know, rare diseases affect, you know, they're non discriminating, they affect everyone. Yeah, in every part of life in every part of the world. And definitely it's sort of opening it up for people to talk about it more and to appreciate what a rare disease actually is. Yeah. Yeah, carry on. Yeah. And also the fact that, you know, we know this with With say, like, you know, with cancers, you'll find out that a celebrity has a cancer, and, but there's that, they're usually, they're just telling their story, whereas with, of, of, you know, this is a part of their life, and I always don't, I don't like that phrase, you know, I mean, you've done press stuff, but you know where they say celebrity reveals. Yes. And, like, they've got this condition, and you think, that's a, I don't like the way they put that. But anyway. Yeah, it feels, it's almost like it's something they've been hiding. Yes. As if they've, like, finally come true, honest about it. But I'd say the interesting thing about those two celebrities, though, is they are, they are demonstrating that the challenges. Even if you are, I mean, Celine Dion, you, you're facing challenges that people who are no, nowhere near the sort of have the money or the status that Celine Dion has. Yeah, absolutely. And Colin Farrell said the same thing and he talked about transition from pediatric to adult care and how he's fortunate enough to have the funding to, you know, fully support his son, but how not everyone has. And that's why he's started up his own foundation to highlight these issues. I haven't watched it yet. Have you watched it? I, which one? The Colin Farrell interview. I've watched the Colin Farrell interview. I haven't seen the CD on one yet. We should do a deep dive. We should. Yeah, absolutely. It's interesting. I mean, one of the things that he raised was about reaching a diagnosis and how his son was initially diagnosed as having cerebral palsy. And I know we've talked about this before. It's often sort of a catch all diagnosis that a lot of parents will receive. And he went through that as well. And then him knowing and him understanding that, you know, there is a diagnostic odyssey that we talk about, although he didn't he didn't use that terminology, but. That it's wide, right, you know, even if you've got that much money and, you know, you have that much private healthcare and things like that, you know, they still, so actually for people who don't have, like you're saying, don't have those, those funds, or, you know, that ability to sort of influence people how hard it must be. Yeah. My God, Emma, I know what you're like, right? What, what, how were you feeling when you were watching that interview? I'm just thinking you're like, get me on the phone to Colin Farrell. Yeah, no, absolutely. And actually I've got a, you know, how you have these friends from the past that you've met and you can't really remember where they're from on Facebook. And I have one who has started up an Angelman Foundation as well. And it made me think about that and the things that, you know, You know, he has some pictures on his son and I thought, Oh, gosh, you know, it'd be really nice to get in touch. And yeah, it's, it's mad. It's mad scene that, you know, the Colin Farrell is demonstrating all these things that we've talked about that I've written about. And he's highlighting it to so many people and he's got this platform and it's almost like, you know, you want to reach out to him, you know, and say, you know, please, can you, explain more because actually this platform is incredible. You've got to sort of really highlight the things that all parents have to go through. All the patients, parents, carers, you know, it's, I get, sometimes I get a bit overwhelmed by it because I think, I think, you know, so for example, you and I both got to spend the election results night together in the communique awards, which was. a pretty awesome night and a whole other absolutely yes conversation i think but you know you then get this new cohort of mps in and who are in power i mean you know this is i think this has been like one of the biggest ever changeover of mps in the history of uk government or something and Do you get this? I get this reading of like, why haven't they come to speak to us yet? Yes. Like I said, I don't know if I've just got this massive illusion of grandeur. I'm like psychotic and I've got illusion of grandeur. But the, and I guess what I feel like is the number of people who will want to be talking to Colin Farrell. on a daily basis. Yeah. And I get this really good like, but I just want to talk to Colin Farrell because he, we could help him. We could give him these words. We could give him this language to make this platform even bigger. I want to talk to Like, Wes Streeting, because this, what he's saying and what he's talking about, if only we could give all of our knowledge to them. Yes. We could help them. And I think it's this funny way of I think because M. Medics for Rare Diseases is such a unique organisation. Usually, when celebrities or politicians are being approached, they're being approached asked for something. Can you do this for us? Can you do that for us? Whereas I feel like if I was trying to approach these people, I'm saying, can I help you with this information that we have, all of this experience that we have so that we can basically use your status and your drive and, and incredible, you know, knowledge about other things, but we could just give you a like really quick infusion of what we know and understand rather than work it out slowly over time. Yeah. And also have that understanding with them that, you know, we know completely what you're going through because we're, you know, not having experienced it personally, but having experienced it via all of, you know, so many patients and advocates and ambassadors that have told us their stories again and again and again, and you're thinking, gosh, you know, This is not unique, you know, this is, you're not alone. There are other people out there that have experienced this, and just to, you know, just, yeah, to have that conversation, or someone like Keir Starmer, whose mother had a rare condition, or, you know, things like this, where you feel like, well, actually, we could talk to them and say, So, you know, we understand a bit about this. Talk to us. And talk to these, and talk to people on a personal level. Yes. You know, like, and I like that a bit, you know, I, I was, you know, last season I was did an interview with Baroness Nicola Blackwood. Mm hmm. And one of the things I, you know, I don't know if this is true, but when I speak to you. Nicola, I feel like I don't just see her as a, a influencer or a polit like someone with influence, someone who's within the House of Lords, someone who can give me something. Yes. It's, I, when I hear her story, there's bits of it I personally relate to and the rest of it I, you know, I really relate to from all the work that we've done. You're listening to the Rare Disease Podcast for Medics, brought to you by Medics for Rare Diseases. If you like what you've heard so far, stay connected with us by clicking the follow button and stay updated on Facebook, and Instagram we love to hear from our rare disease community and we welcome you to join us as a rare disease ally. Just hit the links in the episode description. Yes. Yes. Yes. And I think that you know, I think that it's just the same, isn't it? Being able to see the person underneath the label. Yeah, absolutely. And I think particularly for you, Lucy, because you've lived in a rare disease community for all your life. So I think you really, you know, I think it gives you that ability to actually see under the skin. And, you know, you, you have a real lived understanding of everything that they would have been through and and I think that really comes, comes across and actually one of the One of the feedback from someone that I spoke to recently with who I won't name obviously, but then and they said, you know They really appreciate talking to us because we actually listen and I think yeah, and I think You know the the really sort of, you know, the big take home thing about that is that we see people as people With you know complex and lots of other issues going on not just their health. They're not just a condition You know, they have to live with a condition But it's part of them. And I think that's very much, you know, where we sit in seeing people like that, because it's about the person, not the disease. Yeah. You're bringing me you're taking me back to Nottingham University, listening to Live Lounge, I think on CD, or maybe on like, mp3 player. Yeah. There was a cover of, I'm gonna, I'm gonna have to look it up. Do you know the thing, the song? And it goes, People are fragile things. Munich, that's it. By the editors. Oh, yes. I could try and sing it. But I LiveLound version, which I think was a cover by Corin, Corin, Corin thingy Ray. People are the fragile things you should know by now. Be careful what you put them through. Yes. That always comes to mind. Yeah, yeah, that's a really good point. At Nottingham University, we have to point out that we both went to Nottingham University. Oh, love Nottingham. And we both went to Bath. And the London. We did. We were meant to be. Exactly. Also, for all those people out there who've just got their university positions. Yes. Congratulations. For anyone who is disappointed, don't worry because you are listening to, did you go into loss again through clearing or is that just me? Well, I did, but I changed. I didn't need to go through clearing. I went through clearing because I changed 'cause my mom was a bit poorly at the time. I wanted to be nearer to home, so I was originally gonna go to Birmingham University. Oh, glad you didn't. And I decided to change and go to Nottingham because it was commuting distance, although I did end up living out in halls of residence anyway in Derby Hall. Shout out to Derby, from Derby, I'm moving to Derby Hall. Yeah, there was an irony. Yes, but but yeah, there are spaces that come up through clearing. So if you have any I mean, that's a, that's a good example really, isn't it, of sort of, you know, life throwing small curveballs and, you know, but there is a way around it and people are there to help. Even though it may not feel like it at the time, but, you know, me being nearer to home was really important at that time. And although Birmingham wasn't particularly far away, being at Nottingham meant that it was basically a 25 minute drive from my house and it just meant that I could get home if I needed to. So it gave me that flexibility. But yeah, so if your lifestyles changed, if your, you know, if your grades weren't quite as you expected, there are other options out there. Yeah, I got into Nottingham through clearing to do genetics. I mean, it shouldn't really have been surprised. I'd had like a major back operation that took me. years to actually really like to fully recover from. But I thought, yeah, I'll just carry on and do my AS levels and A levels. So probably unsurprisingly my AS levels that I did while wearing a back brace and et cetera, et cetera, didn't quite go so well, did better at my A levels. But yeah, I went to Nottingham through Clearing and what a great university. And then And then in the, in my finals, as you know, I was very suddenly bereaved. My, my dad died very suddenly, and they looked after me so well. So big up to Nottingham. Yeah, that's really, really good to hear. I do think it's Then we both made it onto the JEP course in Yes, London. So I know. And then yeah, and that was four years of chaos and excitement, living, living and breathing in East London and working around the clock studying. It was an intense four years, wasn't it? Would you, I think we could agree to that. Yeah, but we met, you know, we made some amazing friends and I think it bonded us. Yeah, definitely. We yeah, we have a lot in common. But and then so now you, I think you've just had your three year anniversary, yes? Yes. I know, it's weird because I kind of, yeah, it feels like, you know, three years seems like a long time, but it feels like longer. I guess because I've known about it for so long as I knew about, obviously, from university and you started out students for rare diseases. So I remember going to the events then and reading things that you're putting out. So it just, you know, it felt quite natural, really joining. And obviously we've got you know, our JEP colleagues so kindly on the on the trustee of our trustees. And we've got, If they're not, you always, we're always roping along some former. Some alumni from Barts to support. We're really lucky. Yeah, we are really fortunate. And it's, you know, it's a really innovative university and I think that really shows. And I find whenever I get talking to someone and then you find out they're like, they're a medic and they're usually from Barts, they know how, why that selection process happens, but it's a good medical school. I, I, I enjoy going there. Although it feels like a lifetime away now, I think was it 11, was it 10 years? 10 years this year. This time, 10 years ago, we were starting our first foundation year one jobs. Wow. Where were you? I started off at Homerton in East London. Nice. Which was lovely. How about, you went up to Harrogate, didn't you? I did went up to Harrogate. Harrogate District General, where I started on paediatrics, which I have to say is awesome. Oh, sorry, I just got pinged. Yeah, Harrogate District General. I actually used to, because I was working there before, I used to be a ward clerk there. So then I went from ward clerk, went off to London to do medicine and then came back as a doctor. And I started on the pediatrics woodlands. And I have to say starting on paediatrics was a, it was a false sense of security. And it meant that when I then started adults, on call, on night, everyone else had had four months of experience with paediatrics. working in a hospital as the only F1, etc. And I didn't because I've been on pediatrics. So it was a bit of a, it was nice in a way, but it was quite hard to then go on to adults where everyone's basically relying on you and you essentially really starting your first day. Yeah. Four months after everybody else. And then you feel more embarrassing asking all the questions and everything because you feel like everyone's been here. And I think on my first, it was either my first night or my second night, someone went into status epileptica, someone was in permanent seizure. And yeah, that was quite a tough start. Really, really hard. But then, you know, I think one, so I started on MAU. It'd be ACU, wouldn't it, in some hospitals. But I think that was a really, really good starting point by comparison because it was very varied. You're part of a large team. You work closely with the A& E team and you realize that there is always someone there. So, you know, the fact that you are, you know I remember my first twilight shift and my first shift was a twilight shift. So everyone's just gone home and then I was on call and then you got all the bleeps, especially because, you know, the first day people hadn't all had their Drug charts written up correctly. So I was getting pulled left, right and center to write up drug charts. When they're sort of nurses were coming and saying, Oh, hold on, they haven't got this prescribed, you know, normally warfarin. And I was running around and then you realize that there are a lot of other doctors there, you know, there's the, there are anesthetists, there are A& E consultants, you know, there are, you know, there are other people, there are senior nurses to ask for help. And that's one of the things I always say to junior doctors starting, you're never completely on your own. Get to know your pharmacist. Get to know your pharmacist because the warfarin, the reason it's always warfarin is because you've got to like pick a number out of the air. Yes. So so, you know, you need the pharmacist to help you definitely. Yeah, exactly. So just you, and I remember actually the pharmacist saved me on so many occasions. On one of the wards, I think it was my second placement on endocrine. And I think she's still a friend of mine on Facebook and she was just brilliant and she taught me so much. And I just go through things with her. It was wonderful. Yeah, I, I still remember the, the pharmacists well from from Harrogate District. Particularly the paediatric pharmacists who, obviously because you've got different doses. So hard. Yeah, and, and it, we also got to become friends and it's, it was really nice. So yeah, that was 10 years ago. 10 years ago, yeah. Moving, yeah, like always moving forward. So what are you, what What are you excited about coming up? We've got a load of things coming up with M4RD, as you know, Lucy, and I don't want to, you know, disclose too much. But I think it's a really exciting growth period. And obviously we've got the two new members of staff. I think it just means that we have the opportunity to really sort of, you know, really fully explore our mission and just go, you know, take it to the next level moving forward. Obviously we're going to have rare disease day coming up. I was going to say, just tell everyone what they want to know. Emma, are we going to be doing a sock campaign? I think you can guarantee that there will be a sock campaign. It's going to be socks. There's going to be socks. There may be new stripes. Yes. You know, I, I don't want to give away too much, but yes, there will be socks or, you know, for people who don't want to wear socks for whatever reason, they can, you know, they can get involved in any way they want with stripes in any way they want. Well, as I, as we know, because Emma sent out the certificates to the winners of that people were wearing all sorts of stripes. So that's amazing. There was one, you know big shout out to Dana who went full zebra. And yeah, and she won the best best outfit, and she, so she works at the Evelina in London in the pediatric department, and yeah, and, and through a contact, you know, we got this photo of her, she was wearing stripey tights, stripey top, stripey headband, stripey shoes. I mean, she went all out, but not he, not even with the socks, in her own way, which I loved, and we all loved. So yeah, I'm excited to see that. I think it's just getting bigger and better each year. I would say so. And you have a genius behind it. Oh, you're very kind. I'm not trying to say genius. Mad woman behind it. Such a serious, such a serious thing. And we symbolize it by stripy socks. But you know, in the NHS at the moment, people need I think any excuse to have some light heartedness and some camaraderie and some fun, so, you know, why not? I think in the world at the moment, being able, if we, let's, let's start thinking of people as individuals and then sort of, Yeah, having some light hearted fun together. Yeah, silliness. I think it's, you know, it's really, really important. Just, you know, get those happy hormones going, have a laugh. Yeah. Yes, absolutely. So We do that work, don't we? We have our silliness. We're dealing with really, really serious things, and then we'll have real silly moments, and I think that's so important. But isn't that the point? Isn't it the joy? Isn't it the joy of if you can, this is the whole point is that when anyone lives in any kind of, with any kind of sort of challenge or lives with a rare condition. I mean, I grew up, I was surrounded by people with rare conditions. Yes, they were incredibly sad, just. you know, really heartbreaking moments and times. But I don't think I know a single situation where there wasn't also on the flip side, laughter, joy, love. Yes. And that I think is something we can take in buckets from the rare community. Yes. Adversity. isn't, it's not like we don't need the Oxfam adverts or the sympathy videos and all the time. The vast majority of people I know who have rare conditions or live with disabilities, you know, it's who they are and they, they're just, they want to live their life. And life is a whole bag of emotions and experiences. And As and I think that's in the end, that's why we tried to make this podcast a bit less interviewee and more conversationally, because in the end, we can all relate to that, can't we? Yeah, I think so. And Yeah, it's life, isn't it? You know there are good things and there are bad things and it's about getting that balance. But you know, some people have a lot more challenges than others. And I think that's one of the things that we, you know, we appreciate. And we yeah, that we sort of take forward when in our communications and things like that, because it's not as easy for some people as it is for others. But you know, together, we can work through things. I think that's part of our ethos. Yeah. Well Emma, thanks for joining me today. Are you, you, me, you are gonna be featuring more often whether you like it or not 'cause no one wants to listen to my voice all the time.. I don't think anyone wants to listen to my ish or tones either, but everyone loves your Derby tones. Am I doing, am I doing your Derby fair? Is it Well, Goby possibly with your BBC accent?. You know, it's fake. You could possibly do my Derby tones. You know, my, you know, my accent is fake. That's a whole other podcast. That's, yeah, but it's not fake to you. You don't fake it. No, I don't fake it. But you inherited it. The, the, the yes. How I came to sound like this from a family of Londoners and A Man From Belfast is a is a whole other podcast. Yes, that's the next, tune in next week. It's a history podcast. It's a history podcast. So, we'll be looking out for, so we, so, I think a really key thing is, keep an eye out for hashtag show your stripes. It will be coming up. Get ready. And also, you know, if anyone's got any ideas for events that you want to run, Rare Disease Day, it's the 28th of February. It was 29th this year, but next year it will be 28th because we don't have 29th, the rarest day of the year. And you know, in any way you can, show your stripes. It not only shows support for people living with rare conditions, but it also helps spread awareness in the community. sort of light hearted and fun way. So please do get involved any way you feel. You can contact us by the website. Always willing to hear your fun, crazy, serious ideas. Bring it all forward and we can work with you on it. I see. Colin Farrell, if you are listening, you can contact Emma, just fill it, just www. m4rd. org. Just go ahead, fill in the contact form. If you could just make sure you describe who you are so we remember. Yeah. Full name. Yeah. You might have to put, you know, what you've featured in recently so we, we realise who you are, but we could definitely get you some stripy socks. Okay. Tell us your shoe size Colin Farrell. Yes. On that, let's go. Alright, see you later Emma. Bye. Thank you for listening to this week's episode of the podcast. If you are interested in taking our free Rare Disease 101 module full of useful tips for medical professionals, or perhaps joining one of our forums, visit the link in the episode description. To be notified of our weekly episodes, make sure you click the follow button to stay in the loop. Or give us a follow on social media via the links provided. It means more than you know. Thanks everyone and remember to dare to think rare. Medics for Rare Diseases is a charity registered in England and Wales. The charity is supported by a number of commercial companies, including pharmaceutical companies, but is operated independently, and these companies have no editorial control over its contents. To find out more, please visit m4rd. org slash sponsors.