Inspiring Working Lives

S03 E06 | More Than Clutter: Megan Karnes on Understanding Hoarding and Changing Lives

Morgan Hunt Season 3 Episode 6

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0:00 | 33:09

In this episode of Inspiring Working Lives, Dan Taylor sits down with Megan Karnes, founder of Hoard UK, to explore the realities of hoarding, mental health and the power of turning lived experience into meaningful change.

Megan shares her journey from volunteering in the mental health sector to establishing Hoard UK from her living room, building a national organisation dedicated to supporting individuals affected by hoarding behaviours and challenging common misconceptions along the way.

Tune in to hear:
•  How a career in mental health led Megan to found Hoard UK
•  Why hoarding is about far more than clutter
•  The challenges of changing perceptions and reducing stigma
•  The importance of compassion, understanding and support
•  Lessons from building an organisation with purpose and impact

SPEAKER_02

We got our first call. I picked up the Skype phone and the woman on the other end of the phone said, Where have you been? You know, and that just meant the world to me. We begin a process of being there for people who, you know, are being treated effectively like rubbish.

SPEAKER_03

The social mission versus commercial reality.

SPEAKER_02

Yes. We had an advocacy service, a therapeutic helpline, and then a home support program, and it was on me.

SPEAKER_03

Wow, yes.

SPEAKER_00

Welcome to Inspiring Working Lives, the Morgan Hunter podcast where we explore public sector leadership journeys. From honest chatters about career highs and lows to lessons and wisdom to inspire the next generation of leaders that will shape our society.

SPEAKER_03

Hello. Today's guest on the Morgan Hunt Inspiring Working Lives Podcast is Megan Carnes, CEO of Hoarding UK. Hoarding UK grew into a multi-service organization helping thousands of people every year through helplines, advocacy, training, and in-home support. Megan! Hello. Hello! Welcome to Morgan Hunt today. Welcome back to Morgan Hunt. Welcome back. Yes, you're a long-standing um.

SPEAKER_02

I think you just said over 20 years of Morgan Hunt helping me develop my career.

SPEAKER_03

Oh, that's fantastic. It's so lovely to see that, and um, I know you're a firm advocate of us.

SPEAKER_01

I'm very much so, I believe that.

SPEAKER_03

Well, Megan, today's a bit different because we're really going to hear about your life story and how you've gone on to run this amazing charity so successfully for so many years. But I want to take you back because you um originally you're from the States.

SPEAKER_02

I'm from New York in in um in America, yes.

SPEAKER_03

Yes, okay. And childhood, start us off there. How did childhood look in uh New York?

SPEAKER_02

Well, I think mine was a bit different. Um my brothers and I have I had an older brother and I have a younger brother, um, were all uh grew up doing television commercials. So by the time I was 17 I had a pension. I still have a pension, yeah. So we were professional children, which I think um when you look at this world in which anybody can have a podcast or or have a presence in the media, it was very unusual then to be on television. So it was interesting. It had its it has its real benefits and it had its real challenges as well.

SPEAKER_03

Okay, so was this a commercial business you're running, or were you?

SPEAKER_02

We were on television doing commercials, yes. There was a commercial with my name in it.

SPEAKER_03

Right, come on, you've got to tell us more about this.

SPEAKER_02

So I went to a party once and I walked up and everybody looked like they'd seen a ghost. I said, What? And my friend said the door buzzed, and you said it was Megan, and he said, not Megan Carnes, who likes ketchup on cottage cheese. And everyone went that one. It was just a commercial for if I could say hunt ketchup.

SPEAKER_03

Right.

SPEAKER_02

I don't know why. So basically, yeah, so we did a lot, we worked a lot. It wasn't um, you know, it was a it was a job. Right, so fame of sorts in the United States. Yeah. I don't want to, you know, certainly, you know, not famous, but in a small place, being on television, working with some important people, you know, you you did you did have um you were known to people who didn't know who I didn't know, so people would know me and I didn't know them.

SPEAKER_03

Okay. And in terms of career aspirations, was acting and television part of your well, I think initially um I I think when you do something like that for as long as we did, you think that's the world.

SPEAKER_02

So initially I um studied at the American Academy of Dramatic Arts, um, which I was not a very, very good actor, um, and I wound up doing backstage work, so props and uh stage managing for many years. Um, and then I took a temporary position uh at a talent agency, which was a very interesting fit because my mother had at a certain point taken over at the management of us as children, and so I worked in that field, you know, answering phone calls and doing things uh in relation to her work and her work supporting us. So it's a kind of a natural fit that I wound up on the agency side uh until I went into production.

SPEAKER_03

Why did you decide to come to the UK?

SPEAKER_02

I always joke that um I think because I always wanted when I left New York at 25 to drive across country um in the US, um, I wanted to come here. I was I was desperate to come to London. And I joke that I think it's because of Mary Poppins.

SPEAKER_03

Right.

SPEAKER_02

I think that gets a laugh, but I think it's it's um you gotta think about Mary Poppins. She's a bit of a badass. Sorry. Yeah. And I she was always kind of something that I aspired to be, you know, strong and you know, she was just cool. So it was the the perception of London, of course, which is so beautiful in the film, but also I think, you know, Mary Mary is like treated like she's sugar and and she's a lot of spice.

SPEAKER_03

Yes. That's a great summary, yes.

SPEAKER_02

So my first experience, you know, was all of the the sort of cinematic beauty of of London.

SPEAKER_03

And it is a beautiful city, isn't it?

SPEAKER_02

Oh, it's my favorite place. We travel a lot. Uh my haircutter is Japanese, I'm I'm from America, and he said to me once, what's your favorite place? And I thought, I just said, London. And he looked at me and goes, Me too. Really? It's just the best city. I just love the city. I just do.

SPEAKER_03

It's just fabulous. So you you've come over here. We've got this background in the States of media and television and wonderful things. How did you start working in the UK?

SPEAKER_02

And well, I got here on a I came over on a student visa to study uh computers. Uh, this would not be possible at at um my age at that time now, so I was in my 30s. So I came over on a student visa and I could only work part-time. And I also I think one of the amazing things about sort of working for for all my life is is that that ethic is there. So the first job I was able to get part-time paid me six pounds an hour. Yeah, and I had no issue with that. You know, I went from six to twelve, and then I think right around that time I found Morgan Hunt. And once I found Morgan Hunt, I was able to to be more free, you know, to sort of they could get me jobs, uh, administrative roles uh that were better paying and with more opportunity.

SPEAKER_03

Right, okay. And so were you starting to move into the charity sector at this stage, or I just was trying to work. Yeah.

SPEAKER_02

I really think, you know, that's when I came over, I just needed to work. Um, and once I so the student visa, I guess it was during that period that I met my partner. Um, and so then when the that whole thing changed, you know, that so you're no longer studying and then you want to stay here, sorry for hitting the mic, um, we were in a long-term partnership, but my partner uh is a woman and we had no legal rights except in the UK, which had something called the concession to unmarried partners. So because we'd been together for so long, we were able to apply for my leave to remain uh in a relationship akin to marriage, which we did. And once I got sort of settled, uh then I started to make choices. But I was, you know, I I worked, you know, uh when I got here from the day from the day-ish I got here, um, in in any job that would, you know, use my skills. And they're always interesting. I I always I don't I don't think Hollywood's any better than any other work. I think work is interesting if you're interested in it.

SPEAKER_03

Yes, yeah, yeah. Okay, so that's great. So the UK attracts you with Mary Poppins' chimney pops.

SPEAKER_02

Thank you, Julie.

SPEAKER_03

But then it's the legal structure almost that allows you to be a commitment.

SPEAKER_02

Absolutely, the human rights, human rights, you know, that's it's we are going in in sort of strange ways at the moment in terms of human rights. Um, but it was because of the UK's concession to unmarried partners that I was able to stay.

SPEAKER_03

Yes.

SPEAKER_02

And it's just wonderful.

SPEAKER_03

Right. So when does this whole idea of mental health come into you as a form of work and so social media?

SPEAKER_02

Along alongside this this history, um, I have parents, and my mom um had a mental disorder called bipolar disorder, and she had a very rapid cycle, so she went high and low, so mania to depression every month. It's very unusual. I think having that lived experience of her struggles as well as the struggles that result because of her struggles. Now, I I never want to talk about her as if she has a mental health issue and that's who she was. She was extraordinarily intelligent, beautiful, funny, and she had a very significant mental health issue. So when I came here, you have to think of 1997. I just, I don't know, I couldn't believe how mental health was being talked about. Now, this is around the time, Tony Blair. Um, it's good to talk starts, like awareness starts to be raised, but I thought to myself, I want to be a part of changing this dialogue because a person who struggles with uh mental health is a person. They're not their disorder, you know, and I just wanted to be a part of that. So I got settled. I feel like what was I doing at the time? I had a consultancy contract, so I my background, as a result of all the project development in entertainment, I did work here for uh Screen South and uh Film East. I did some some of those kinds of things. I wrote a short film that got commissioned by this the Film Council. Um so I was doing that, and then I was doing work, so I was doing organizational development consultancy work. Um, and once I got settled, I took a very, very, very, very low-paying job. Uh, I think it was one day a week for a mental health charity, and that just changed my life, you know.

SPEAKER_03

Right. And how did life change? Was it being exposed to the problem in greater detail?

SPEAKER_02

Yeah, so basically, A there were three of us, I think, and everyone was part-time, so and three I think it was four, three of the people were volunteers, and there was me. And we were a national charity uh for I I don't do you want me to discuss what it was? Yeah, um, so it's a wonderful organization called OC OCD Action. Um, and they were struggling at the time, you know. Um OCD is a very common disorder. Uh 1.2% of the population are known to have it, and it was just at the point where it was becoming aw people were becoming aware of it. So the nice guidelines were published, and things like media within within I think about three weeks of my being in post, I had to say selective serotonin re-uptake inhibitor in in a television interview. Um, but anyway, so so I started to do that work, and in the five years or so that I was there, the organization was transformed. I have a very strong background in building things. I do it in my own quirky way. Uh, but you know, if I set a goal, I'm not necessarily able to write the paper about what it's going to look like, but if I say it's gonna happen in two years, it pretty much happens in two years to the day. So at the end of that five years, the charity was the strong, and uh we had a massive amount of volunteers, and we had changed offices, and income was good. Um during that period, because hoarding was then considered a subheading of obsessive compulsive personality disorder, we were getting colds, and you know, I what do we do? We didn't have anything that we could do about this. So a person named Satwant Singh, a recognized specialist, was at that point just beginning to look at hoarding. Um so we set up the first hoarding support group in the UK in East Ham, local.

SPEAKER_01

Wow.

SPEAKER_02

Um, 40 people would come from all over the country. Um and when I left there, no, there's no, I guess I just want to always be be clear that at that time OCD was just becoming known. So this idea that a small charity could handle something as complex as hoarding was not on their radar radar, so it wasn't discriminatory. They just said hoarding's not really OCD, so we're not going to do anything with it. And when they said hoarding is not really OCD and we're not gonna do anything with it, I felt obligated.

SPEAKER_03

Okay, so let's talk a bit about hoarding then. So I guess most of us kind of first feel of hoarding was that TV programme that came out in the UK. Is that Mr. Yeah, I but yeah, yeah, I and I I think the problem with the hoarding things, it probably made it a quirky entertainment thing rather than probably the serious problem it is.

SPEAKER_02

I try to be balanced about television and hoarding. Basically, until television shows started to cover it, there was absolutely no empathy and no understanding. Now the charity has never supported a television show and never will, because they on the other side of the coin represent a very complex issue in a very tidy-up way, as if the outcome that is positive for a person who hoards is a clear room. Um, so we don't support them, but it's really important that they humanized people who hoard for people who don't understand it. So it's a double-edged sword, I think. Most things are. When the BBC asked us to do an information, you know, an awareness-raising video, we did support that, and it's a stunning piece of animation done in collaboration with the BBC, Open University, Kino Vino, who I just love, they're an animation company. Um, and it is one of the things I'm most proud of in my work for these 20 years. It's just because it's the participant script, it's her script. We didn't write that script, and it shows how a person can be supported to change with hoarding.

SPEAKER_03

Right, yes. Okay. Okay, we'll talk more about hoarding in a bit, but let's go back. What's it like to set a charity up from scratch?

SPEAKER_02

Ah deep sigh. A, I never had any intention of setting up a charity.

SPEAKER_03

Right.

SPEAKER_02

I had developed so what's it like to run a small charity for OCD? I got a lot of skills. I learned a lot of skills that we didn't have money, so I learned how to build websites. I learned how to do things that were not any way relevant to my life before. So when when um it was not going to go forward with that charity, who, you know, are just an amazing organization. Um I just felt a moral obligation, I don't know how else to put it, to provide some sort of short-term cover for people who hoard because people were being evicted, people were losing their children into care, people were being blitz-cleaned. I did a small piece of research in about 2009 and 60 interventions and no outcomes, you know, clearances, clearance, just and it just I didn't, I just wanted to do something, always assuming that someone would come along and do it better.

SPEAKER_03

And through this process of setting up this charity, you've obviously hired people down the years, etc., and it's seen as a great starting place for people in the charity sector.

SPEAKER_02

I think so.

SPEAKER_03

Yeah, and how how do you do that? What you know what are you looking for in the people you hire, first of all?

SPEAKER_02

It's helpful in our work that people have some understanding of hoarding. So it's not a criteria, but most of the people who come to our organization have a family member, have some connection to hoarding, and I think that helps drive the passion to do things better. They want to learn better, they want to help their whoever it is better, um, and they want to help us to be a part of doing that organizationally. So there is usually, and that I don't want to hoarding has such shame. I'm not outing anyone, no one, but it's just usually there is that personal connection. Uh secondly, we have placement. So we have a placement program. It was one of the first things I did once I moved it from the corner in my lounge room, um was start the placement program. I had done that previously, and uh we work with organizations across uh London at the moment. Uh I wouldn't mind expanding that. Um, so we have placements, and placements are the first step, in my view, to getting into employment because you need to build the skills and have the experience to get the job. You're you're not likely to come out of a university with a degree and be on anyone's list to sort of hire. So I think the placement program is one of the first ways. Secondly, um, from the placement program, we hire. We hire. We we use people who have skills and experience that are relevant. Right now, one of my students, my I use the word my, I don't own anyone, um, but one of my old students uh is studying clinical supervision and he's coming in doing his placement with us, and I'm hoping that he will stay. We need his experience in hoarding in that role. You know, he's done the work for us, he's done the therapeutic space uh and spatial work, so he's an ideal candidate, and that's that's a good position to be in. You know, and he wouldn't. I've not ever been able to hire a supervisor before because they don't have the hoarding experience. It's not it's not just mental health hoarding.

SPEAKER_03

Got it, okay. But through this time the staff members spend with you, they then you almost encourage them to fly and take to the sky. Yes, actually, we're back again. Yes, it's a very popular thing. Which is empowering for them, isn't it?

SPEAKER_02

Well, I think we should be. I don't, I don't, I think we should be. Um so yes, I've had people go from placement to management to Oxford University, from placement to management. So in our organization, it's sort of there's no there's no hierarchical step to to management because people who have worked with us for a long time are already there. I'm not going to hire someone who's been working with me for two years in a placement role, as as a in a junior role. So people come in as managers, that helps to build their career, their CV, their appointbility with other organizations, and I think that's important that I value them and empower them by recognizing their commitment to our organization.

SPEAKER_03

Yes, that's fantastic. So all part of their journey forward into the world, yes.

SPEAKER_00

This episode is brought to you by Morgan Hunt, a public sector recruitment agency with over 30 years of experience. Whether you're looking for your next role or growing your team, we manage purpose-driven people with organizations making a real difference.com to find out how Morgan Hunt as far as working on.

SPEAKER_03

Okay, so Megan, this world it seems there's more challenges than ever before. We're up against more than we ever should have been. How do you cope with that? Yes.

SPEAKER_02

Well, I guess, you know, we were just um talking about the fact that I think I'm gonna talk about young people right now, um, because I feel that the world that my generation, I'm older than you, um has left them is uh somewhat of a mess. And I feel that in that um environmental, economic, um, political, you know, in that in that environment, we need to be focusing on empowering young people who have inherited this to make it better, to to be to bring the social change that they want to bring. And you know, that's a huge part of what I would say my mission is in relation to uh the organization at this time, giving young people opportunity. Not that I I'm old, but I would hire anyone of any age, so please don't don't think it's that. But you know, so we're working with Shaw Trust. I don't know if you know Shaw Trust, they have an apprenticeship program. Um we bring in volunteers, you know, so I really Feel like what I want to do is show people it's hard, it's hard, it's hard, it's hard, it's hard, but do it, change it, invest your time and your life in it. Don't worry about what should be and what other people are doing. If you want to change it, change it because you can. You know, from my lounge room, we make a big, big difference, and that's all that I care about in the work. I don't, I'm not a salaried employee at the moment, I've an acting chair, you know what I mean? I I really just care about that social change, and I feel with all the pressures young people have and the cynicism they might have about making that real change happen, that I would want them to know that it is hard, but you can do it, and I want you to, I we need them to do it.

SPEAKER_03

Yes, very much. So that empowerment you talk about, it it can see okay, but it's a massive task, can't it? Have you any advice about how they would break that down at all and just try to Well, let's let's use a hoarding analogy. Yeah.

SPEAKER_02

So if we have a significant level of horde, there are a large number of belongings in a space that are physically representing psychological challenges such as trauma and anxiety. Um, other people may experience similar trauma and anxiety, and it may manifest in different ways. For this person, it is visually represented in the horde. So, what, you know, when I first got onto the block, what was happening was going in and moving the boxes out and taking the bags out and clearing the spaces and thinking that that was a remedy. I never believed that. My research was under an issue as I did my research as a therapist trainee, and I had to beg to let them to let have them let me do it on hoarding because hoarding was not considered a mental health issue, which I did not believe. Um so basically start with one thing. You know, don't you can clear a hoard and it doesn't solve the problem. It doesn't help the person. It's so if you're going to start an organization, the first thing I did was put up the one-page website. That's what I did. I put up one page. Hoarding UK, I liked the name. Um I didn't register it because I wasn't interested in, I didn't think I'd be in this position 20 years later. Um, so first the website went up. The second thing I did was at that time register a Skype number. You know, so I got a phone number. That was not my personal phone, that was a business phone. And within four weeks we got, we, you know, me, we got our first call. And it always, and everyone who ever hears me say this knows that this happens every time. I picked up the Skype phone, and the woman on the other end of the phone said, Where have you been? You know, and that just meant the world to me. We begin a process of being there for people who, you know, are being treated effectively like rubbish. You know, so step by step, you know, step by step. Don't the big dream happens in small moments.

SPEAKER_03

Yes.

SPEAKER_02

Yeah?

SPEAKER_03

Yeah, yeah. So it is half the big dream, but then we break it down. So today we do the website, tomorrow we do the website.

SPEAKER_02

And then people started to need support local. Well, you know, why stop, why stop there? So uh one day a week to two days a week on the helpline because it just got we got so busy, busy, busy. Um always a long-term program. I never it was never just answering calls, so people always had uh 20 at that time it was 27 sessions of support, so always a long-term model. Um, but then people were being threatened. I'm from a place that doesn't have social care, doesn't well we have social workers and that kind of thing, but what we have here, health care, social care, housing, these we wake up to them every day and they're it they're just so humbling to me. So when I sort of say that services were dealing with this in a reactive way, it's not to to blame them. Housing has a duty to maintain things safely and habitably. These are so everyone's just reacting. Um but I thought, well, what happens if I go? And here I am, you know. So that was the beginning of the building of the in-home program, because of course that wasn't going to be one session. I also, after training as a therapist, uh, trained as a mental health advocate. So we had an advocacy service, a therapeutic helpline, and an in-home support program, and it was all me.

SPEAKER_03

Wow, yes.

SPEAKER_02

Because I had all those skills. Yeah, I mean, yeah. There we go.

SPEAKER_03

Brilliant, yeah. And I get what when we look at the sort of welfare that supports so many people, what do they misunderstand in terms of hoarding? Hoarding, yeah.

SPEAKER_02

I think one of the big misconceptions is that people hoard don't want help. Because what we do when we go in to help is so if you have a coping mechanism, whatever. They they can be healthy, they can be unhealthy, they can be drinking, they can be eating, they can be spending, they can be exercising, they can be working. I I once was on the radio and I said they can be, you know, the CEO of a multinational corporation, and the radio host said, Well, that's just his job. I was like, Well, you know, working 24 hours a day, you could look at that on a psychological spectrum. You know, so I mean I just think it's how we look at things. And in this, what people who hoard or any, you know, we don't go in and take a bottle out of someone who's addicted to alcohol, break it on the ground, sweep it up, put it in a bag, and say that's your addiction, sorted. And yet that's how we've been treating hoarding. And no, people who hoard don't want that. They don't want that. Now, the hoarding UK's message, which I think is complex, people is not that we're here to protect the hoard. We are not there to protect our hoard at all. It is unsafe for the person, unsafe for those around them. Um, but that what we will do is help this person to heal the trauma and anxiety that is driving this compulsive behavior. And that's not twelve sessions of anything.

SPEAKER_03

Yeah.

SPEAKER_02

It is long-term multidisciplinary work.

SPEAKER_03

In terms of mental health, then, does hoarding actually almost make it easier to because there's a visible sign, isn't there? Yeah, you can tell there's a problem there of some sort. Right? Where are other forms of mental health people who are hidden? Yeah.

SPEAKER_02

Well, people who hoard are hidden.

SPEAKER_03

Yes, of course, yeah.

SPEAKER_02

So um I think you know the statistics are two to five percent of the population.

SPEAKER_03

Wow.

SPEAKER_02

At two percent of the population, we're almost double the people, the number of people that have OCD as we commonly know it, is obsessive-compulsive spectrum, so it's on a different manifestation of obsessive-compulsive behaviors. Um I think it's why I I think it's why I stopped. Because as much as I had this magical and interesting childhood, I also had developmental trauma. And when I saw a horde, I I saw that. I I felt that. I felt that that's what my trauma looked like. We're there for people. We've had people who've been trying to get support for 10 years, you know, and we're still with them. We stay. So yeah, so it was sort of pulling up my bootstraps and um working hard. But I also feel that it was useful to have all that experience under my belt. All the mistakes I'd made. Be willing to make mistakes, please. That's it. We gotta make all those mistakes, get it wrong. Yeah. Piss people off. Can I say that? Yeah. Yeah. So it's just uh, yeah. Yeah, so here we are. And I'm and I'm trying, you know, so I was just saying that I'm hopefully in the next uh bit of period of time uh looking to appoint a CEO. That will be my next step. I will go back to the chair. We need to recruit at trustee level. I need trustees. Um, they've been there since day one, but we need to improve the board. So I'm in a doctoral program with no desire to be called doctor uh at all. Anybody calls me doctor, slut um if I get there. But uh so I really want to focus on the research because that's everything that we've just talked about is is in that pro is in that project, and and um I'm really I won't be able to do everything I'm doing now and do that. You know, because remember, I have to work to pay my bills.

SPEAKER_03

Yes, yeah. Well, I hope Morgan Hunt can help you out in using our database maybe to reach out to the picture. So there you go.

SPEAKER_02

Well, I will always talk to Morgan Hunt.

SPEAKER_03

This can be pro bono, I think, in view of the wonderful work you're doing.

SPEAKER_02

Well, I won't hold him to that.

SPEAKER_03

Oh, here we go.

SPEAKER_02

I would love that. I would love that.

SPEAKER_03

Well, Megan, thank you for sharing your career journey with us. It's it's a wonderful story, and it sounds very much to me that Mary Poppins is still pulling things out of her magical carpet bag.

SPEAKER_02

She does. She's a wonderful character, wonderful female lead, um, and a strong, you know. I mean, we've got to thank Julie Andrews for for so much there, but uh, and should I say Emma Thompson uh later saving Mr. Bank. Um, but basically, yeah, I think she teaches us to be strong, to be funny, and to say goodbye. You know, we we're not there to stay.

SPEAKER_03

Right. Okay, but you're finding it hard to say goodbye to uh to that charity because you've done such a wonderful thing.

SPEAKER_02

I can't be there until I pass on, I think, but I hopefully not in every position that I'm in.

SPEAKER_03

No, okay. It's been a wonderful story, thank you so much. Yeah, wonderful.

SPEAKER_00

Thank you for listening to Inspiring Working Lives, the Morgan Hunt podcast, driving positive change and helping you to grow your career. If you've enjoyed this episode, make sure to subscribe.