Episode 33 – Can you be a trustee with IA?

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: and Katy

Debbie: How are you, Katy? Has your week been a bit more steadier

Katy: Work actually was quite busy towards the end of last week because some of my colleagues are doing a massive presentation today in Munich I’m obviously not there.

Debbie: No, you have something better to do.

Katy: So, it was putting the final touches to what they were doing and the final planning. But no, pretty good. And it’s almost Halloween. It will be when this episode goes out.

Debbie: I know. Yes, we do pre-record, But I don’t actually do Halloween, though. So, do you go out trick-or-treating?

Katy: We will do on Friday with some of my son’s friends. And then where my son goes to beavers, they always do a Halloween disco, but it’s also my son’s birthday on Friday. So, it’s always a bit of a tricky balance doing something to make his birthday special, but also, doing stuff with his friends that they’re doing as well. And then we’ve got his party on Saturday, which I’m quite excited about. Have I done much towards it yet? No.

Debbie: What are you doing for it?

Katy: It’s a Laser Quest party. there’s not really, I mean, it’s pretty much turn up, take a cake, food and everything’s all kind of done for you. So yeah, pretty easy.

Debbie: I do miss those days. I used to really enjoy doing, I used to make cakes and I will put on Instagram. I did make my daughter a beautiful frozen cake and that was two tiered It looked gorgeous and it was really nice. So I do miss doing that, but I don’t do Halloween. I never have, was when I was younger, it was literally trick or treating. I remember eggs being thrown.

Katy: Yes, people did actually trick, didn’t they?

Debbie: Yeah, so put me off and so I just hide.

Katy: So, we did go trick or treating as kids.

Debbie: I only remember seeing it through ET. I was watching when they do it I was like, what are they doing? They’re dressing upside.

Katy: I was once ET.

Debbie: Dig that photo out!

Katy: Well, I think I was more ET in the bike, ET as a ghost. So, you could just say I was a ghost, but…

Debbie: That’s the only reason how I remember the Halloween side. So no, I have done trick or treating with my children before, but then also because I don’t eat sweets and I don’t agree with giving sweets to children. That’s just me personally.

Katy: Yeah.

Debbie: But what we’re going to be talking about today is its trustee week next week, the third to the seventh of November. And trustees do so much amazing work behind the scenes that not many people really know about because it just ticks the charity along and pushes them into new directions. But Katy I know you’ve done some research in the timelines of when we set up Inflammatory Arthritis UK. And it was just over a year ago, we had our first board meeting. What did you think about setting up a charity and then becoming a trustee? What were your original thoughts?

Katy: Yes. It was a little bit daunting to be honest, because I’d volunteered for a number of different charities over the last 14 years, but volunteering is quite different to being properly involved with what goes on in a charity and keeping things on track and making sure that we’re delivering on the charity objectives that have been set out. So, I was really excited because where it’s different is you can kind of help guide and put forward more of your ideas of what could, take the charity forward. So, it’s been really exciting and a massive learning curve, especially starting from something from complete scratch.

Debbie: Yes, it was completely from scratch. I have been thinking about starting a charity up for a number of years, the time was never right. And I know you messaged me when I was on holiday last.

Katy: Yeah, was the 27th of August.

Debbie: You messaged me to say, let’s do something. I put a business plan together, market research, and then we met in London

Katy: It’s the 19th of September.

Debbie: on September 19th. Then we had our first board meeting beginning of October, sent everything to the Charity Commission and

Debbie: Then it did seem to go, it wasn’t straightforward. Don’t get me wrong. It wasn’t straightforward. was a few.

Katy: No. And the weight was quite nerve wracking, wasn’t it? to find out if we’d been approved.

Debbie: Yes, it was. must have had to go on many dog walks just to get away from it and not look at my phone just thinking, are you going to email me? But it did. Then thankfully it all went through. It was established in December, but we launched it new in January.

Katy: In January, yeah.

Debbie: So yeah, so look out for something in January we’ll be doing a year’s anniversary of something we haven’t yet decided yet, but we will. But so, when we had our first board meeting. What did you think of that really?

Katy: Yes, it went as I expected because it was all about making sure we’d got the right policies in place for different things. It was also interesting because I think something that’s quite good to have on a trustee board is people that challenge ideas and question why you’re doing certain things in a certain way. Obviously, that makes it more difficult, but it also means that what you actually then move forward with is the right thing for the communities that we’re ultimately trying to serve with the charity. So yeah, there was loads more to it though than I expected, I think.

Debbie: Yes, I’d been a trustee of the Arthritis Musculoskeletal Alliance (ARMA). So, I’ve been that for a couple of years and I’ve been in, suppose I’d actually worked in the charity sector for quite a few more years as well. So, I knew more about that side of it. But then when I remember being the first trustee and going to my first board meeting, I was surrounded by so many different people I would never have met anywhere else. And it is what they bring to it as well. But with ARMA it’s different because it’s all the member organisations had to nominate someone. So, you had to know about ARMA before you became a trustee and then people voted. Not all charities have voting to become a trustee. You sometimes have to send your CV in covering letter and then you have a chat with some of the trustees to actually work out whether it’s what you want and what they want as well. Because it is a two-way thing. But then it is looking at the governance side is my gosh, that word to even to me was like, but like you slightly daunted what does that actually really mean? But the NCVO, National Council for Voluntary Organisations have got so much information on there about becoming trustees. And they have four aspects of governance, which is direction, effectiveness, supervision and accountability, which I think for any business you have to do as well. And charities are quite different from businesses, but they’re now thinking more like a business.

Katy: You’ve got to the fundamentals from the business world and kind of put that in. Because I was actually chatting to one of my friends and he’s a chair on some much larger charities. He was saying you’ve got to think for more business-like, then maybe you think you need to.

Debbie: You do because also, there are other arthritis charities out there and there of thousands of other charities as well. So, when you then go out for funding, you have to be competitive. You have to have that, unique selling point and everything like businesses have in order to get that money in that buy-in as well. So, you, do have to think more business-like, but thinking, with your inflammatory arthritis. Did you think then being a trustee, with the stress and that might make me flare, so maybe I wouldn’t want to?

Katy: I think because where I am with my disease at the moment, I feel quite comfortable that I can take on extra commitment. So, I think, but I do think that is a valid point that people need to think about their own health when they’re looking at some of these. Because I mean, being a charity trustee is a voluntary role. So, you’ve got to think about whether you’ve got the time, the capacity. And the ability to pace yourself to enable you to take on extra commitments outside of what whatever you’re doing day to day. But because I work in the corporate world, I’ve always thought volunteering and this opportunity, it enables me to give back where which I know we’ve spoken about it before because a lot of big corporates do a lot in-house voluntary opportunities. But for me, they’re not as meaningful as doing something for a cause that’s really close to my day to day.

Debbie: I think that’s the thing. It is giving back because, we don’t get paid for this. We are both volunteers and I volunteer probably a bit more of my time because I do the day to day, the admin side, I do everything else that’s generally involved in running the charity. And when we get that feedback, when we get those comments come through and saying how much these podcasts are really helping people, it’s just like, this is why we’re doing it. And that really makes me know that this is so worthwhile just seeing that impact.

Katy: I completely echo that. Every time we see whether it’s a review of the podcast and how it’s helped people, whether it’s a comment on our socials about how the fact that we’re doing it a little bit differently as well. And we have got that unique space, I think is brilliant. Only what nearly 11 months in, you know, we’ve managed to sort of carve out our community,

Debbie: Yeah, completely. we did have a board meeting last week, and there are so many things that we could be doing, which is great. But then I also think it’s quite, that’s a tough side for me, because I then have to manage the resources and what we can actually do and what we could get funding for and who we could collaborate with. So that side is tricky, but it’s great to have those ideas coming through. And I love brainstorming. And this is what people with lived experience really does bring because we always say that everyone’s journey with IA is so different. Everyone’s has a different perspective on things as well. But when we come together and bring all those ideas together, could help even more people. But then, hearing all those ideas how do you then come out of that board meeting going, right, this is what we could be doing?

Katy: That’s pretty tricky. because I guess one of the things, is thinking about trying to prioritize So I actually did some time management training the other week and there are the four squares where you have the things that you must do now, the things that are nice to have. Then the things that you ultimately just binned because they’re potentially a waste of time. So, it is trying to think a bit like that. Where is our time best spent and what have we got the resources to do now? What is something that we probably want to hold off and do, but park for the future. And then what are the ideas that essentially just aren’t going to work based on where we are because we’ve currently got a limited audience, might as well be honest. So, there’s some ideas that maybe would work better, the bigger the community gets. So, little plug, the more you can share what we’re doing that really, really helps us then be able to do extra things. And you did the survey last month, that also helps with driving that direction. What do people actually want from us?

Debbie: Yeah, we’re going to close that survey very soon. But so, if you haven’t filled it in, please do again, be on our show notes. But it is knowing that we’re making people not feel alone because I think going back to our diagnosis, you do feel alone straight away that there isn’t anyone else going through this, but there is and we’re still going through it every single day. Another plugin, we’re looking for new trustees. We want new people to come on our board, whether you’ve got personal experience and that lived experience, it gives so much of a new perspective and actually why we are doing this charity. But also whether you’ve got a friend or a family member who has inflammatory arthritis. your perspectives on how we can help support people like you, because this is what we’re here for as well. It’s not only those that live with it, but the people that help and support those people that do.

Katy: What do you think makes a good trustee?

Debbie: Yeah, that’s a really good question. It’s, I think having confidence because I must admit it just is from my personal experience. When I then became a trustee, I was surrounded by like CEOs, surgeons, inspirational people. But when you’re on a board, you’re all equal. You are treated as equal. And I think that is what is what I love being on a board. And, it’s just having that confidence to say, to hear your voice, let that be heard because everyone else will then listen as well. There’s no right or wrong at all. It’s just, you know, putting your opinion across and making sure that people listen to that. Actively listening as well to everyone. And it’s making sure that you can see bigger picture and actually what we’re trying to do because sometimes you can get so caught up in like day-to-day stuff or just what one project and actually sometimes you just need to take that step back and actually say right is this working if it’s not fine we can close it and not be scared to actually have those taboo conversations about closing some projects.

So, it’s just being open to those conversations as well. And if you do have like marketing or grant writing digital marketing any other skills that you do in your day-to-day life that you feel that would really help a charity. But it’s just having that collaborative teamwork together to broaden actually what we can do yeah.

Katy: And what do you think has been the biggest challenge? Because I guess, as you say, there’s been a lot of things we’ve needed to do, which aren’t in our skillset and have had to be learned along the way. What, do you think you found the most difficult?

Debbie: That’s a good one. I thought probably quite naively, I can do so many grant applications or we can be successful, it’d be great. It’s so competitive out there and I didn’t realize actually how competitive. So, I think it’s just balancing that and making sure that I don’t put too much burden on our other trustees like you as well, because our other trustees that they work full time as well. And also, being aware that some you have inflammatory arthritis, others have other health conditions as well, that brings up that lived experience, that personal experience, but it’s also for me to manage it all as well because I don’t want to.

Katy: You’ve got to manage your own health as well. You’ve got to remember that.

Debbie: Well, yeah, that’s true. I’m learning that as well because I could be doing the charity stuff 24-7, but it’s learning to step away and actually go, right, my brain can’t do any more of this tonight. Let me just…

Katy: Yeah. And that’s the difficult thing, isn’t it? When you’re doing the majority of the things you are solo at the moment. And if anyone’s set up a business or being an entrepreneur, there’s that balance of actually remembering that you’ve got to have your own life outside of this and stopping when needed.

Debbie: Yes, it is which I think I’m doing a lot better. But the beginning I was just like, my gosh, you’ve got so much. Let’s just crack on and, sending emails ridiculously late at night.

Katy: Yeah. I mean, because it was an absolute powerhouse really, when you think about it from the 27th of August to then it being all confirmed and ready to go in December, pretty much. That to me, that was my biggest shock was how quickly it all got going and that was all down to you.

Debbie: Yeah, I suppose it was because I learned how to do a website it but also getting all the social media pages set up as well. That isn’t straightforward. That was really..

Katy: Thinking about the handles, isn’t it? And making them fit the space and be easy to remember and link and all that kind of stuff.

Debbie: Yeah, and naming of the website as well and naming of the charity as well. So, and then the logo there was actually looking.

Katy: The logo, there’s tons of logos. I was looking through earlier the amount of logos that actually were designed or sketched out prior to actually landing on the logo that we have.

Debbie: Yes, and I must admit, I love our logo. I designed about 95 % of it. Then we did have a designer say, just tweak it a little bit. But then, they weren’t paid for that either. So, I think it’s also knowing that you’re a charity and people can buy into just being a charity. They, donate their time. And I think that’s also what I’ve learned as well. Yes, the money would help, but it’s so much more valuable is to have someone’s time who is an expert that is at

Debbie: Absolutely brilliant because I’ve met some people over the summer helping me with podcasting and it’s like great, because I think with the cost of living and the money situation it is is tight and I completely get that and I suppose for me I feel lucky that I can give up my time but this is fulfils me. And I think that’s what gives people that fulfillment as well, that they can’t give that money, but they can give a little bit of their time. And that is so valuable. And when you then become a trustee, taking it back to that, that’s what you can give, your, time in those meetings and reading some papers beforehand. And if this is your passion, please do get in touch because we would love to have you on board. So please do email us at info@inflammatoryarthritis.org. Again, we’ll put this on our show notes, we would just love to hear from you because your time, that means so much more than the money side, I think.

Katy: Yeah, I think the best thing anyone could give anybody is their time. in my opinion, that is the best currency.

Debbie: It is, I love that saying. think you’re completely right. But what have you really enjoyed about being a trustee?

Katy: Well, I mean, doing this has been, this isn’t really the trustee role, this has been my favourite part is having these conversations on a weekly basis and seeing how it helps people. But I think the biggest thing has been actually going through that process of setting the charity up and seeing exactly how things work, how the governance work, how the finance work. I had no idea about the world of grants prior to this. And just seeing how we can make this work on an absolute shoestring, I think is an absolute incredible thing to have done in a year. Keep this going without really having any funds coming in. it just shows that with the technology that’s available, how you can utilize social media for marketing, there’s so much that you can do without needing the funds, obviously the funds mean you can do more. So, I’m not saying you want to do it on a shoestring all the time, but I think being a little bit creative of how you put out information really shows that you can help people with, limited resources. And I think that’s amazing. It’s been incredible. Just how, quickly it’s gone as well. I can’t believe this time last year, I think the charity commission had all gone in and we were in that waiting phase, waiting to see, what would happen next. And then also setting everything up in terms of sort of branding website. It’s been really exciting, because it’s only, obviously we want it to grow, but it’s been such a tight knit the four of us working together. It’s been really exciting and to see people’s different opinions, different thoughts. Not that we all agree all the time, that would be really boring if we did. But having those challenging conversations, people pushing back on ideas, but ultimately what that creates is something that works really well and runs really smoothly.

Debbie: Yeah, 100%. We do need people that challenge in the right way, which they do. Because yeah, I must admit, I can be so much caught up in the detail of it all. And sometimes for someone to say, Debs, will that work? actually, no, it probably wouldn’t. And that would take up so much more of my time. Is it feasible? Probably not. Because again, that’s just what we need. And I think any charity needs that as well. And it is making sure that we do have that time to just have that reflection on what’s gone well, but also what we’ve learned. Think that is so vital. Think for any business is what you’ve learned is more powerful than actually what sometimes what you’ve done in the business side.

Katy:  Well, yeah, because you only learn from mistakes as well. So, you’ve got to make a couple of mistakes or things not to go in the way that you want. So, some of the grant applications haven’t been successful, but that doesn’t matter because you’ve worked out how to do it. You’re like, get around that and develop everything that you’re doing moving forwards.

Debbie: Yeah, and that’s what and I think it also shows that we are adaptable, we evolve, and we have to especially in these days and ages where with so much technology going on, that we have to be open to that. We can’t be stuck in the 90s because that’s it wouldn’t work like that. So we are very we’re very open to having conversations, know, some wacky ideas. Great. Let’s have them. And sometimes that makes us laugh.

Katy: And I guess as well, even if people are listening and you’re not interested in being a trustee, we are needing volunteers as well. So, you don’t have to commit to be a trustee, but also think about if you’ve got some skills that we could use, come forward and talk to us. And there might be some volunteering opportunities.

Debbie: Yeah, the volunteers that we’ve had recently have been absolutely amazing. And they live with inflammatory arthritis. And again, sometimes they’re like, really sorry. It’s fine. You know, we’re volunteers as well. And we just want to make the world a slightly better place for people. That’s why we’re doing this. So please do think about becoming a trustee or a volunteer. You’re very welcome to get in touch with us. You can just have a brief conversation with us. You can email us. All the information is on our website and our website is inflammatoryarthritis.org. So go to the contact us page. We’re very happy to have a conversation with you. But thank you, Katy so much for your time. And I’m so pleased that you found it rewarding, probably challenging at times, but it is and just trying to make the world a slightly better place. But please do rate and follow the podcast wherever you get your podcast from. We are on social media. We’re on Blue Sky, Instagram, Facebook, and LinkedIn. So please do like, follow, share, and comment wherever you can. And next week, we are going to be talking about what triggers us to flare.

I think we’ve mentioned a few things in some of the podcasts, but we’re going to do more of deeper dive in that. But Katy have a fantastic Halloween and happy birthday to your son. And until next week, it’s goodbye.

Katy: Goodbye.

Trustee Week Special – Behind the Scenes of Running a Charity
This week, Debbie and Katy celebrate Trustee Week (3–7 November) with an honest chat about what it’s really like to start and run a charity from scratch.

They share the story behind Inflammatory Arthritis UK, from that first message and business plan to launching a national charity, all while managing work, health, and life (plus a bit of Halloween chaos and a laser quest birthday party!).

Hear them discuss:
💙 What being a trustee really involves
📊 The challenges of governance, funding, and planning
💪 Balancing health and volunteering with inflammatory arthritis
🤝 Why time is the best currency you can give
🌍 How you can get involved as a trustee or volunteer
If you’ve ever thought about volunteering, joining a board, or just wondered how charities really work behind the scenes, this episode’s for you.
📧 Get in touch: info@inflammatoryarthritis.org
🌐 Learn more: inflammatoryarthritis.org

Memorable Quotes
“When you’re on a board, you’re all equal. It’s about having the confidence to use your voice.” – Debbie
“The best thing anyone can give is their time. That’s the best currency.” – Katy
“We might not have big funds, but we have creativity, purpose, and lived experience and that’s powerful.” – Debbie
Follow and share to help us grow the community 💫
Instagram | Facebook | LinkedIn | Bluesky → @Inflammarthritis
Next week: What Triggers a Flare? 🔥

🎧 Keywords:
trustee week, charity, volunteering, nonprofit, chronic illness, arthritis, inflammatory arthritis, autoimmune disease, health advocacy, patient voice, trustees, governance, lived experience, charity leadership, giving back, community support, health podcast, UK charities
Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content.

For more information, head to https://inflammatoryarthritis.org/