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Believe in People
Believe in People explores the realities of addiction, recovery, and stigma through conversations with those who’ve lived it.
Featuring voices from across the recovery community - individuals with lived experience, frontline professionals, public figures, and policymakers - offering unfiltered insight into the personal and societal challenges surrounding substance use.
Hosted by Matthew Butler and produced by Robbie Lawson, this award-winning series is a trusted platform for dialogue, empathy, and change.
🎙 2024 British Podcast Award Winner - Best Interview
🎙 2025 Radio Academy Award Nominee - Best Speech & Entertainment
🎙 2024 Radio Academy Award Nominee - Best New Podcast
Believe in People
71 | Elly Mortimer: Three Decades in Harm Reduction – Hep C, Learning, Listening & Leading
Elly returns for her third appearance on Believe in People to share insight from over 30 years working in harm reduction, with a focus on eliminating Hepatitis C.
She explains how treatment has progressed from year-long courses with severe side effects to today’s short-course tablets that are 96 percent effective. Elly draws on decades of professional experience, making this an essential listen for anyone interested in how public health services respond to complex and evolving challenges.
The discussion covers how Hepatitis C affects a broader population than often assumed. While commonly linked to injecting drug use, the virus also impacts people who have had tattoos abroad, unregulated cosmetic procedures or shared personal care items. Elly provides clear information about risk factors, symptoms and the long-term damage the virus can cause, especially when it remains undiagnosed for years.
This episode also highlights the importance of completing treatment and the barriers people face in doing so. Elly discusses the role of co-production between service users and commissioners in improving access and outcomes. Whether you work in healthcare, study public health or want to understand one of the most significant viral risks in the UK today, this conversation offers clarity, depth and practical advice.
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This is a toolkit for recovery & resilience. Whether you’re in recovery or seeking to understand addiction, there’s something here for everyone.
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🎵 Music: “Jonathan Tortoise” by Christopher Tait (Belle Ghoul / Electric Six)
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🎙️ Facilitator: Matthew Butler
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This is a Renew original recording. Hello and welcome to Believe in People, a two-time Radio Academy Award nominated and British podcast award-winning series about all things addiction recovery and stigma. My name is Matthew Butler and I'm your host, or, as I like to say, your facilitator. Today we're joined by Ellie making her third appearance on Believe in People. Few voices resonate with such consistency, clarity and compassion.
Speaker 1:With over three decades in this sector, ellie's been a driving force in harm reduction, hepatitis C awareness and injecting safely, never shying away from the hard conversations and never losing her sense of humour or humanity along the way.
Speaker 1:She's a local legend in the truest sense passionate, knowledgeable and proudly committed to change.
Speaker 1:Whether it's the thousands she's tested, the colleagues she's trained or the life she's saved in the addiction sector, ellie's influence is everywhere and we're so proud to welcome her back. I start my conversation by asking Ellie what being in this line of work means to her. I love my job. I love that you love your job, because it's the one thing that we do often see with yourself is the passion for the work that you do, which I get. And obviously I think that we do often see with yourself is is the passion for the work that you do, which I get, and obviously I think to be in this line of work, you do have to be passionate about it. But I also think about a thing called compassion fatigue, empathy fatigue. That can come on whereas you're really strong and stout about your message of harm reduction around uh, hep c testing, and that's never wavered with you for as long as I've known you, which has to be well over five years now, if not longer. Yeah.
Speaker 1:Maybe eight years, I think.
Speaker 3:I've known you. I think it's eight years since we came and invaded your building.
Speaker 1:Exactly yeah, but you've always had that compassion, that empathy for doing what you do and that motivation behind it as well. So I suppose what do you think keeps that In an industry like this, where compassion fatigue is is an existing thing? What do you think it is about your role specifically that does keep you as motivated and as engaged as you are?
Speaker 3:one of the one of the beauties of my role is I'm allowed to have the freedom to make my job work and to make my role work. So if I, if I've come up with an idea to improve whatever I might be working on, whether that be, uh, reducing the, the prevalence of hepatitis c, or supporting people with a really gory injecting wound, because I've got, because I've got a lot of years under my belt and because I've got a lot of freedom to make my role work, um, that's what keep it, that's what keeps it fresh, that's what keeps it like exciting and do you know? And and inspiring, do you know?
Speaker 3:And we have so know inspiring, you know, and we have so many. I experienced so much success. Not that I've got I'm not involved with every single piece of someone's story, but just seeing the success that we get in the work that we do is fabulous. But I think you know the big one for me is I've got a lot of freedom. I can use my eccentricities.
Speaker 1:It's welcomed, isn't it it?
Speaker 3:is it is, I'm allowed to just like go with it. And I think that's what's really important, because if you're making an impact with whatever you're doing, and if you're loud, and if you're making an impact with whatever you're doing, and if you're loud, and if you're confident, and if you're enthusiastic and you know what you're talking about, then you're going to make a difference, and that's what it's all about.
Speaker 1:And there's a big team of staff here. I think there's definitely between, I think is it?
Speaker 1:180 people that work at the specific service in which you're at and you're well respected among those people as someone at the specific service in which you're at and you're well respected among those people as someone with the knowledge of harm reduction. I suppose the interesting thing that we sometimes find in in this sector is that, um, only an addict can help another addict, only someone who's been through those experiences can help somebody you know with those experiences. How does that resonate with you in all the work that you do and as knowledgeable as you are in providing harm reduction advice and helping people in the way that you have helped them?
Speaker 3:see mine's learned experience it's not, I've never injected drugs. Yeah, I've. I don't think there's many people in this building who haven't dabbled with this, that and the other yeah but I am not an injector. I've never been an injector, but, uh, and I'm still learning, matt. You know, I'm still learning about injecting harm. I'm still learning about hepatitis. I'm still learning about all the all the things that that affect my role as a harm reduction recovery coordinator. But there is a place for lived experience too, I'm part of a duo.
Speaker 3:So, there's myself and John Thurston, who he's the lived experience, I'm the learned experience and we're the yin and yang for each other. We are your perfect duo in the needle and syringe provision and I think you know we bounce off each other. There are many service users and a lot of different professionals in the past who thought I've been there, done it. You know, got the badge and that's a compliment. Yeah, the badge and that's a compliment, yeah yeah, absolutely.
Speaker 3:That's a compliment, because there is that real belief that you've got to be there. Done it until you've been in my shoes, but I've got empathy. Yeah. And that works just as well.
Speaker 1:Yeah.
Speaker 3:John's taught me things and. I've taught John things and we've shared our knowledge, and that just makes us a better, stronger team.
Speaker 1:Yeah, because empathy does go a long way. I mean, I've said it before but you know, for people with a history of substance misuse, people that are going through addiction, they don't receive a lot of empathy outside of, necessarily, the four walls of the services in which they're supported by um. They are met with stigma. So I think, really, when you do have that question of, oh, what do you know, you don't care, and stuff like that, so, look, I wouldn't do this job if I, if I didn't care, um, and it's because you've got empathy I think one of the things I've said this before was the uh quote that was said to me.
Speaker 1:It's like, well, um, I've not been hit by a bus before, but I know that it would hurt. And I love that little analogy because you don't need to go through it to know that someone's hurting, that someone's going through pain and maybe they've experienced some form of trauma to lead them to this stage and where they're at. But with the Lift and the Lent experience for you and obviously john is a previous podcast participant for this series do you find that there's, is there, a preference for john over you is, or do you feel like you're sometimes met with resistance because your land experience as opposed to lived experience neither of us have experienced, uh, resistance from from anyone.
Speaker 3:John's john is up there in the skies for a lot of people that walk through the door in terms of reputation and respect, because he used to use with a lot of these people. Similar. I can say the same for me, because there are still a lot of people fortunately still alive that I knew over 30 years ago when I first started, that there are still service users still around and living and breathing.
Speaker 1:How long have you done this job now?
Speaker 3:31 years next month.
Speaker 1:So in that time you would have seen a lot of people come and go. Naturally, there could still be people accessing the service.
Speaker 3:now that you saw maybe at the start of the journey 30 years ago- Absolutely, and it's a joy that that they're still alive, because I I wouldn't even be able to give you the figure of the, the, the people that we've lost over the years, um, and we're still losing now, and, and, and. These are all really preventable deaths. You know, none of our service users are generally dying a natural death at the end of the years. Every one of the deaths that we've experienced and I've experienced over the years could have been preventable, and some of them are, you know, just terrific. I mean, you were talking about analogies, my analogy for the lived, the argument for what's best, the lived experience, the learning experience. So this is actual fact.
Speaker 3:I did have a shit-dead dad Brian, a shit-dead dad, a shit-dead dad Brian, a shit-dead dad Brian, that's what I call him. He was my real dad, but I never met him. And so I say to someone in the needle and syringe provision all right, we've both got dads that are dead. Man, shit dead dad Brian, because I didn't know him, it was shit. You've got a dad that you've just lost, say, and he meant the world to you. How's our experience of bereavement and grief? The same, because I haven't got any grief and yours is life-changing because your dad meant the world to you. So how can anyone's experience of addiction be the same? So that's my analogy.
Speaker 1:I love to bring my shit-dead dad Brian into this. No, that fucking shit-dead dad Brian is brilliant. I absolutely love that. It is interesting, I think, just going with what you were saying then about, like you know, I mean people that have been in addiction for 30 plus years of heroin. I always found that interesting because I think when I was younger and maybe more naive to substance misuse, I thought people who use heroin it was almost and obviously people do die from it, but I thought it was almost a death sentence to be on heroin, you know in some way, and and definitely not to be able to be on it for as long as some people are. But we do see people in services that have been using for 13 plus years. God, yeah, which is incredible to me. Yeah, because it makes it almost sound like it isn't as high risk as it's made out to be when you put it in that way.
Speaker 3:I mean, I suppose, if you're choosing to use heroin recreationally and there are the people out there, there are a lot of professionals, you know, people who have access to pure pharmaceutical drugs where harm is very minimal, but I'd say generally the people that work with us in this service and in drug and alcohol services throughout the world their heroin use is harmful and high risk and it's because they're not using pharmaceutical heroin or other pharmaceutical drugs.
Speaker 3:They're using street drugs and that's where we see the harm. I mean you just have to be in any waiting area in any drug service and the amount of people who were living, they've had amputations it's just through the roof and the people are getting younger and younger and it's all caused by injecting harm. And it's the same with people who have got hepatitis C and they don't. Either they're not being tested or they've been tested and they have got hep C and it's having the treatment. That's maybe a barrier for them and it doesn't need to be there. There are no barriers between um testing, treating and curing um hepatitis c. You know that of that of a massive passion of mine.
Speaker 3:Uh, some people call me a bit of a fanatic about it, and I think you have to be.
Speaker 1:Um, because it's hepatitis c is the biggest killer in drug and alcohol services when it's untreated and I think there's something that you can say that you're fanatical or you're obsessive and, to be fair, anytime I see hep c and being mentioned in this service, it's always, you know, related to to you and something that you're doing and getting that message out there. But I think there's something that I think of the amount of people whose lives have probably been served because you have been fanatical and obsessive about that harm reduction messaging. Yeah, so it's okay.
Speaker 3:So here she is banging on about it again eyes roll, eyes roll, eyes roll, eyes roll.
Speaker 1:But there's something in that isn't there where? Had you not been like that, had you not said the things that you've said or done the things that you've done, that we wouldn't necessarily have had those outcomes and people who are now Hep C have gone through Hep C treatment wouldn't have done that had you not had that obsessive yeah, and there are people like me all over the the world.
Speaker 3:You know, this isn't just a a local issue this is a global issue and there are. There are millions of people living around the world with hepatitis and and they who don't know and not just hepatitis c and hepatitis b and that they don't know that they have hepatitis and that's, I think, one of the main components of hepatitis C. You can have it for years and years and years and not have any symptoms whatsoever, and so this is why it's so important to be tested.
Speaker 1:Yeah, I think there's something interesting as well with you, specifically around the service that you mentioned when we spoke a short while ago that you went on holiday. Was it vietnam? Yes, you went on, and that those who monitor how many people have been tested and and the way that we work as a local service even whole they notice when you're on annual leave because numbers dip in the amount of people that is being tested. Yeah, so that's an interesting thing to show the impacts that you're having.
Speaker 3:Yeah.
Speaker 1:That if you take. I mean, how long was you on holiday for? 17 nights Just over two weeks and we can see something in those figures that there's been a dip in how many people are being tested for. Yeah, I mean, I'm trying to share my.
Speaker 3:I'm trying to. I wish my passion was infectious out and and there are saying that there are a lot of people within all services who who are, but there are an awful lot of demands on on the people I work with with such high caseloads. Now it's completely different to when I had a caseload which I think was manageable. What was caseload? 45. Okay, yeah. I worked with more complex, the more complex cohort of people.
Speaker 1:And is this like 30 years ago, when you started? No, no.
Speaker 3:So we can go back two services.
Speaker 1:Okay.
Speaker 3:So less than 10 years ago. But then, on the flip side of that, we were moving, building and moving organisation every three years, like no service was allowed to bed in so that we could really make a difference. But people have large caseloads now. But this service is the best service in terms of established yeah than any other service I've ever worked in.
Speaker 1:Why do you think that is, then, after 30 years of being in the?
Speaker 3:because we're not we're not changing to a different organization, the, the drug and alcohol service isn't being upheaved to in every single possible way. You can imagine. It was chaotic and awful for for for us as workers. I cannot, I can't, even begin to fathom the impact that had on on the people who need our service. So now we've we're, you know we've we're really getting to in bed and there's still a lot of work to do. You know.
Speaker 1:But I think there is something that you know one of the things that we talk about being really important in the lives of the people that work and with is stability. And I think, as a service, if you are going through new contracts and tenders and changing buildings and whose name is above the door every three to four years, when we've said you know some people can go through you know treatment for you know be using heroin for 30 plus years, you're not going to be able to make changes if you're not able to offer that stability.
Speaker 1:No, and that's the one thing that we're seeing, Because I mean I started here 10 years ago and I'm in the same building that I started in 10 years ago.
Speaker 1:You know, obviously the roles change and the sectors change, and I think I mean, funny enough, I was talking about this last week. I was speaking with the police intelligence officers around substance misuse and one thing that I was talking about was how 10 years ago it very much felt like, uh, it was very much tied to criminality, yeah, whereas I think now there's very much this health care approach as well to people. So you're not being demonized and in the sense of like god, you know, obviously committing crimes, drug addicts, stuff like that, it's now okay. We recognize this as more of a health issue.
Speaker 1:Have you noticed that as something in the last?
Speaker 3:10 years, not in every sector, but if you think about the organisation that we work for, change Grow Live, formerly known as CRI, crime Reduction.
Speaker 1:Initiative and it was the same with Foal Trust as well. That was the Rehabilitation and Prisoners Trust. So prison criminal, all those things was embedded into these organisations.
Speaker 3:So while the organisation that we work for has moved away from that link to crime, which is so healthy, there are so many areas out there that affect other people's lives that are committing crime. I mean, just this morning, before we opened, there's a guy at the door bags He'd been released from prison yesterday to the streets. So how on earth is that guy going to have any chance of breaking the chain? That used to be a project 30 years ago but breaking that cycle of committing crime.
Speaker 3:You people are being set up to fail, yeah, and not only are they being released from prison straight to the streets, it's putting them more at risk of all the harm reduction and blood-borne virus harms that I'm so passionate about, because how do you look after yourself when you're sleeping in a car park in town?
Speaker 1:You're going to try and numb it in some way, aren't you?
Speaker 3:Absolutely, who wouldn't?
Speaker 1:Exactly. I think this is the thing that when we talk about the stigma, these are the parts that I really like to hammer. When people don't understand addiction, it's like just try and put yourself in this situation, imagine this happening to you or this happening to you, and of course it's something. Oh, they shouldn't have gone to prison in the first place, but there's so many factors there and so many variables that you can't always take into account. But I find it bizarre that people are released from prison and don't have some form of like, like structured exit plan that's put in place for them.
Speaker 3:I mean, if you look at the people who have maybe been recalled. So if you're released from and this is I mean I'm not an expert on the criminal justice system.
Speaker 1:Of course, yeah, no, I'm not expecting you to be either.
Speaker 3:But if you are being released from prison and it's a planned release where you've done whatever time you were sentenced or however much you've, and a care package has been put in into place, you may go into um general like an approved premises um, or you may be able to go back to family or to your own, your own property. From how I it, if you've been recalled, and when you're released, then all that package of care is not necessarily there anymore, and we see that all the time where people might come out with a planned release.
Speaker 3:We hear it a lot unexpected prison release don't we Well, yeah, because there isn't any room in the prisons.
Speaker 1:The prison, yeah, that's something that comes up quite a lot in in treatment services.
Speaker 3:There's so much that impacts on on the people that we work with, lives that that the people who like to judge haven't got a clue about they haven't got a clue about the trauma that person might have, will have gone through, and we're not talking about just like one piece of trauma, like bereavement or, um, I don't know something that I get it like childhood trauma, but we're talking about serious trauma here.
Speaker 3:we're talking about, um, like the things of of your worst, the things of your worst nightmares, and the people that we work with. A lot of them have gone through countless amounts of trauma that you just even don't know how they're managing to get out of bed and walk, and that is something to be in awe of, not judged for.
Speaker 1:That's it. Yeah, I completely get that. I don't feel like they get enough credit for it. Really not judged for. That's it. Yeah, I completely get that. I don't feel like they get enough credit for it really in some way. Going back to, obviously, this 30-year career, if you could go back and give yourself some advice on your first day in harm reduction, knowing what you know now, what would you reflect to a younger Ellie coming into this sector?
Speaker 3:I wish I'd done more because I started my first job was outreach with commercial sex workers and then four years later I was working in. We called it needle exchange then, not needle and syringe provision. Working in the Point, very famous needle exchange Is that the thing now needle and syringe provision?
Speaker 1:No needle and syringe provision working in the point very, very famous needle exchange in the central town needle and syringe provision.
Speaker 3:we are not calling them needle exchange now, and the reason we're doing that is um needle exchange sort of indicates that you come for clean needles in exchange for your used ones. Okay, that goes against all. Nice guidelines. The people who use our needle and syringe provision. Their returns, in whatever form they may be, to a pharmacy, to us, to maybe a sharpshooter in a hostel, are phenomenal and just getting better and better.
Speaker 3:I will often give people, 200, 300 plus pieces of equipment, while in the past and it still happens in the pharmacies around the country if you don't bring returns you get less works and this is, and this is something that impacts massively on blood-borne viruses of course yeah, because then you're more likely to reuse needles.
Speaker 3:Share needles yeah, yeah that's interesting, yeah and and that's what we're trying to. That's what we're trying to completely change. People don't have to return to get as many works as they need. If we want to eradicate hepatitis C, eliminate hepatitis C by 2030, we can't.
Speaker 1:You can't be putting roadblocks in the way and stuff like that. You need to make it as accessible as possible.
Speaker 3:Absolutely.
Speaker 1:Sorry, I kind of derailed your advice to younger self by asking that question, but go on.
Speaker 3:My advice to my younger self would be do more homework in your early days. Learn more about injecting in my early days and more about the physiology of it, the effects of it. I mean needle exchanges were very different in them days because it was very basic Come in, give me initials and date of birth and I'll write down what you're having on the form. And that was it. There was a lot of advice given, but it wasn't anywhere on the depth and expertise that we have now.
Speaker 1:Is that because the sector just didn't know enough, or do you feel like you didn't know enough? Personally? Both, really, both.
Speaker 3:So as time goes by, we generally get better at things and I think definitely in harm reduction.
Speaker 1:We are getting better and better and how do the facilities compare to what you're used to doing? Because now obviously it's all very clinical metal cabinets, you know, to prevent whatever you know these provisions are very different all over the world.
Speaker 3:In fact, you can go some. I think it's in New York. There's a needle and syringe provision provided by users and I think it's got a very funny name. Oh, I can't remember it now.
Speaker 1:I'll find it.
Speaker 3:Yeah, it's something like sticks on wheels or something like that. I watched this documentary. There's someone absolutely off their tits yeah, literally off the tits and wobbling around on a bicycle dishing out clean injecting equipment. Do you know what? Whatever works in a place where people need clean works so they don't cause extra harm, they don't put themselves at risk of blood-borne viruses, you know yeah.
Speaker 1:I get that. Bring it on. It's just funny the idea of someone being massively under the influence going round and passing clean works. This one on the back of a little bicycle. Yeah, what sort of myths and misunderstandings about Hep C still frustrate you the most after 30 years of being in this sector.
Speaker 3:There is still the misunderstanding that Hepatitis C cannot be cured. Treatment in the past was horrific. It was less than 50% successful and it was interferon, which was a form of chemotherapy, basically, and the treatment was around a year. People would experience the side effects that you get with chemotherapy.
Speaker 1:So one of our colleagues was just saying this morning about one of our friends losing all her. Yeah, yeah, yeah, I've known.
Speaker 3:I've known people in the past be sectioned okay into the old-fashioned mental health units that we used to have in hull um and and, just like any chemotherapy course, it was really really, really hard. Now it's a course of tablets for 8 to 12 weeks and it's we could.
Speaker 1:We can call it a cure because it's around 96 percent and the side effects are non-existent or minimal explain the thing to me and I'm sure we've talked about this before because even if you're cured of it, you can still test positive to it if you're cured of it, you can still test positive to it If you're cured of it you will always have the antibodies.
Speaker 3:If you have had hepatitis C and had treatment, you'll always have the antibodies. And, very different to other viruses, the antibodies will not protect you, but it also means you don't necessarily have the active virus. Okay.
Speaker 3:This is why it's so important for us to test the people who were partaking in high risk activities. We test them regularly because we're coming to a time at the end of this year where funding for treatment and um like the huge amount of work that's gone into eliminating hepatitis c it's coming to an end at the end of this year.
Speaker 1:It almost feels like an endless pot of money because hep C treatment is quite expensive for service providers. It's around £40,000 a pop, oh, really.
Speaker 3:Per 8 to 12 weeks. That is heavily subsidised by the pharmaceutical companies. I mean Gilead who Change, grow, live, who we've worked with so closely for many years now that their involvement in eliminating Hep C is huge. You don't often expect that with a pharmaceutical company, do you?
Speaker 3:No, I guess not. But no, my experience of working with Gilead is absolutely exceptional. But with every focus that the NHS has, there are a million other focuses that they also have as well, and this is why I'm, for the last six months of this year, five, the last, for the last six months of this year, five months now. The last five months of this year, it's all guns blazing. Yeah, you know, let's, let's find the people in the service who may still have hep c. Uh, we're finding we've got more positive hep C results coming through from people who are solely alcohol clients.
Speaker 1:Okay.
Speaker 3:And people who are not injecting but maybe sharing other drug like crap pipes. Yeah, yeah. But then I can talk about people going to turkey teeth. Yeah. Going somewhere for boob jobs yeah.
Speaker 1:Even tattoos in foreign countries piercings.
Speaker 3:You know, these are all like red lights and that's it and it's.
Speaker 1:Most people probably think oh well, I don't inject, so there's no chance of me having hep c but if they've, like you say, if they've had the tea free done in turkey, if they've had a tattoo abroad, that they could be just as uh susceptible to absolutely living with it. And wouldn't know, would they Absolutely For another 20, 30 years maybe?
Speaker 3:I think particularly as well. Recently we've had more news come out about the blood scandal than pre-19. Talk to me about that, then.
Speaker 1:So what is it to begin with? I suppose so blood wasn't tested. Okay.
Speaker 3:Pre-mid-90s, blood was not tested for blood-borne viruses. So you may be in hospital having a blood transfusion, you might be having surgery, you might be haemophiliac A million reasons why you may be given blood or you may get given blood. In those times A lot of that blood was contaminated with hepatitis C and HIV and, tragically, a lot of those people who were infected with the blood are now dead because that one thing of testing the blood before it was given to people in hospitals and other settings it's hard to imagine.
Speaker 1:Why do you think it wasn't tested? Was it just because we just didn't know enough?
Speaker 3:Probably because we didn't know enough or we didn't know the risk I mean HIV and AIDS. It wasn't even. I mean, I remember when that hit, and I was more, Because I used to volunteer for an organisation called AIDS Action in Hull in my early years and I was more scared when I first started hearing about hepatitis C than I was HIV For what reason? Because the treatment back then wasn't great.
Speaker 1:And with HIV Of course yeah, as you said, it being linked to almost feeling like chemotherapy.
Speaker 3:Yeah, but with HIV there was like the combined therapies. The medication could control it. With HIV, there was like the combined therapies the medication could control it.
Speaker 3:So I was a hell of a lot more scared about hepatitis C. And I mean, obviously now all blood is tested before people are given it. But there are. I can't give you a number, but there are a lot of people living with HIV, the people who were found to have hepatitis C with this blood scandal. They've now had treatment, the ones who were still alive. But the impact on someone's life through that was horrific.
Speaker 3:And when that came out earlier in the year, there was the big uh, the big push for people to test themselves.
Speaker 1:I was going to ask was there a big campaign or something?
Speaker 3:there was a huge campaign for people to test themselves at home, and I mean, can you imagine how much money that costs? So well, I would love that money to be focused on every area of hepatitis C. The funding that was then used for testing on these postal kits took a huge amount of money out of the funds for treatment. So, but do you know what? We are really close to being able to shout. We have eliminated hepatitis C from this service, but it's not just local, like I said, it's global.
Speaker 1:International yeah.
Speaker 3:We've got to push hep B vaccinations because there is no cure for hepatitis B. The protection we've got is the vaccinations and it's so simple to get vaccinated and we offer that as a service for people who are here with us. And it's easy to get hepatitis B vaccination. It's still out there.
Speaker 1:People can still get it. You know, just going to the hep C treatment, and you might have said this before, but for someone who's maybe not listened to previous episodes in which we've had you on, if I was hep C positive and I went through this course of treatment, but I was still, I suppose after the treatment I started sharing needles again, could I get it again? Absolutely Okay. So it's not like it isn't as you said.
Speaker 3:And it happens. Yeah, my fear is, and people do get it again and we've treated people more than once. Okay, yeah, we've treated people more than twice. Yeah. And my fear is, when there is less money in the pot, those people who are still knowingly putting themselves at risk in the eyes of the powers that be, they're not going to be the my fear is they are not going to be the priority for testing, for treatment.
Speaker 1:Sorry I mean with the, with the cost implications of it. I mean, as any, any local drug and alcohol treatment service across the country. If they're going to send someone to a detox or a rehab, they have to put in x amount of work so so they can show they've got a commitment to doing it so they're not just going to come out and relapse, because otherwise you're just, you know, pissing money in the wind, sort of thing.
Speaker 1:I suppose talking about how much um hep c treatment can cost, is there something in that as well? Um, do they have to show any sort of commitment or preparation work, or is it right you've tested hep c?
Speaker 3:you can get treatment straight away you turn up for that appointment that I I refer you in okay you turn up for that assessment appointment with our wonderful specialist hep c nurses within the hospital, at the clinic that we we have here or any other setting. You turn up for that appointment and then you turn up for your meds it's as simple as that exactly.
Speaker 1:Do you think then? Now you're saying the funding in that pot is going to be running low and you said you know people might, um, obviously have to. Maybe do you think in the future people may have to jump through some hoops to get hep c treatment or show commitment to it, before they did in the past?
Speaker 3:okay, they did in the past. I hope not and I hope that everything that I fear that might come next year maybe won't come for Hull our wonderful Hull and other areas. I hope that the focus is on eliminating Hep C because once we eliminate it, like so many diseases have in the world over the decades, it's not something that we need to worry about anymore. But it's an awful lot of work. We need to keep testing people, we need to keep finding the people who were positive and we need to really focus on those people who have had hep c for decades and, for some reason or other, are reluctant to have the treatment that they're such a massive priority of mine and if there was any message that, I would if they're listening to this just to know that they're worth it.
Speaker 1:Bless you, I think, thinking of your experience 30s in the industry, sometimes it's you feel like you're dictated to by, I suppose, commissioners and funders or people that don't necessarily see the whole picture being on the ground. Is there something that you personally would change systemically about? I suppose to improve Hep C outcomes and if so, what would it be about? Are you supposed to improve hep C outcomes and if so, what would it be?
Speaker 3:I think it's already happening, Matt.
Speaker 1:Okay, yeah.
Speaker 3:I think it is already happening. There is joint work going on. We work so closely with um, the local trust. Yeah, um, we work really closely with the hep c trust. Um, the hepatitis c trust can organize and they pay for taxes to take people to and from which is incredible, that, yeah, it's, it's quite unheard of now, isn't it really that doesn't mean that some people that we've got a taxi works, go score, go use and then arrive at the appointment a little bit later.
Speaker 3:The taxi sometimes does a very, but do you know what? I don't care and the Hep C Trust doesn't care.
Speaker 1:They understand, don't they Do? You know what I mean Do?
Speaker 3:you know what we're talking about it. We're talking about it, we're meeting about it. We're talking about the people who are hard to reach and, as an organization and as a global movement, the system's in place to make real change. I mean the World Hepatitis Day, which is the 28th of July this year. The theme is let's break it down, and it's what you were talking about earlier. It's about the stigma, it's about breaking down those barriers that are stopping people from getting tested and treated, and it's not just hepatitis C, like I said, it's all hepatitis and it's not hard. But we need everyone on board. I don't care if people are going to roll their eyes at me until the cows come home when I mention when I open my gob, because you know, I see it. Yeah.
Speaker 3:And I don't care because you know it's these, if we're all working together and there's something as well called, which you've probably heard people talk about a lot co-production.
Speaker 1:Yeah.
Speaker 3:So these are people, this is like people who have gone through treatment, people in treatment, people with drug and alcohol problems, working really closely with the people with the money, the commissioners, the services, the organizations, to make everything better for the service user, and that includes treatment, for the treatment as a whole, including hepatitis c treatment and speaking on co-production, um, what do you think people often miss when they talk about those living with hep c, rather than actually listening to them?
Speaker 1:do you know what I say about that dictated approach of we know best where, the commissioners, we, hold the pot of money?
Speaker 3:I think we're really lucky in Hull and the East Riding. We've got commissioners here in my experience who are really interested in treatment. They're really interested in the people who need the treatment and they and they ship services and the fund and the services that they fund, because they are listening now I can't say that's the same in every single area do you think that's it after again?
Speaker 1:I keep mentioning the 30 years, but you're going to see so many changes. Do you think that has changed massively?
Speaker 3:yeah, there are more expectations from services. That's why caseloads have gone up yeah there are more expectations. But you know, I suppose there's a reason why we've got those expectations because we're getting better at knowing what has to change, to holistically look after the that, that person who walks through the door, to look after everything that they've got going on. So but yeah, there are demands that are really hard as well, but I'm really hopeful and again on the topic of co-production.
Speaker 1:Have you ever had yourself an experience where a service user's taught you something important about hep c? That's changed the way in which you every day, yeah, every day you said earlier, you're not that. You said as much as you know.
Speaker 3:You're still learning I am still learning. Yeah, I mean I've not gone through hepatitis c treatment and just lately I keep coming across people who I've organised and I've referred them for treatment. And I was speaking to a guy yesterday. He's got like a full course of medication at home that he was prescribed last year when I rang him to tell him he still had Hep C and now we know why because he didn't take the tablets.
Speaker 1:And so we're. And for what reason Did he think it was going to affect him in the way the previous treatment had? He said well, he said Do you know?
Speaker 3:I don't know, he wasn't really quite. There's maybe five people I can think of top of my head straight away who have not taken any of the tablets. Those tablets were prescribed to them for their Hep C, for their strain of Hep C, and so there are barriers there and so they're teaching me and making me more aware of the barriers, and there's no point as prescribing medication for people when they're not in a position that can take them, and that you can say that for our people who were street homeless how do?
Speaker 3:you look after tablets when you're street homeless yeah, I think obviously.
Speaker 1:Yes, it's just and again, with it being the silent killer, with it being something that isn't going to affect them so much later in their lives. We've said before, but there isn't that motivation or that quick, you know.
Speaker 3:If you've got a massive injury on your leg, you know that needs looking at. If you've got a virus inside you that you are completely unaware of and it's just slowly working its.
Speaker 1:And very slowly as well. It's not something that's going to affect you in a year or two.
Speaker 3:I mean a decade or more. You might not have any symptoms. Some people experience symptoms straight away, but you know it is. I can't emphasise enough that it's a preventable disease and like dying from liver cancer, do you know? End stage liver cancer is horrific. Any, any kind of cancer and if, if, if, it's preventable and, even more important, it's treatable.
Speaker 1:But we need to know you've got it first do you think these campaigns, these slogans I mean, what did you say?
Speaker 3:the one for this year was let's break it down let's break it down I love the campaign slogans, do you?
Speaker 1:think they work the missing millions?
Speaker 3:I do, yes, I do, yeah, and, and we're going to be using a lot of the slogans that have been used over the years in our celebrations of world Hepatitis Day this year, you know, because just because it's a slogan for one year doesn't mean it's not brilliant for decades to come, with my favourite coming from Fatboy Fatboy Slim, what are they called? Which one Thingy Fred, right Said Fred.
Speaker 1:Fatboy Slim, what they're called. Which one uh thingy, fred right said, fred, right said fred. Fat boy slim, fat boy slim. It's three words.
Speaker 3:Yeah, yeah, right said fred fat boy slim yeah you can see which documentary I was watching on the telly last night. Uh, so they joined in with a campaign and for the importance of being tested for hepatitis c. They, in their day. A lot of people listening to this might not have heard of them, but they had a very famous song I'm Too Sexy.
Speaker 1:My favourite was You're my Mate.
Speaker 3:You're my mate and. I will stay. I love that song.
Speaker 1:It's on my Spotify. It comes up regularly. Absolutely love it. Can't go wrong with Right Said Fred. Can't go wrong with Right Said Fred.
Speaker 3:You can't go wrong with Right Said Fred, anyway they had. So their slogan, or that slogan for that Hepatitis C event was I'm not too sexy to get tested.
Speaker 1:So did they have Hep C? No, okay, I'm sure I read years ago that they both had.
Speaker 3:Hep C. Do you know what? I don't know if there was some fake news out there, but I think because they put themselves at risk in the 90s by they were using steroids at the time they were clubbing, they were using a lot of club drugs and they were sharing the needles. When using steroids, they definitely put themselves at risk. Yeah and yeah, there may be fake news out there that one had Hep C, but regardless if they did or not, I'm not too sexy to get tested is a brilliant slogan.
Speaker 1:We mentioned this when we spoke a couple of years ago about different celebrities that have had Hep C and that you wouldn't. Naturally you wouldn't know, because either they've not necessarily made a big deal out of it at the time or maybe they felt shame or stigma because of it, but then have seen the spoke about it. Can you remember?
Speaker 3:who some of them was. I suppose, like one of the famous ones that people will probably be aware of is Pamela Anderson.
Speaker 1:See, I didn't know that until you mentioned it to me.
Speaker 3:So Pamela Anderson is very famously supported, tested and testing and treatment. Because she had it, she was told she was going to die basically. So she's the one that I was already aware of, but maybe that's because I'm in Hep C circles. Work travelling in Hep C circles. But the people who grew up when I grew up um evil kenevil yeah uh, stuntman, for those who don't know, and if you don't know, google him. Yeah, amazing, uh, larry hagman, who played jr in dallas yeah you know.
Speaker 3:And then there's Marianne Faithfull Lots of different people, the lead singer of Red Hot Chili Peppers oh really, yeah, didn't know that one, yeah, I mean, the list is endless. A very famous WWF wrestler.
Speaker 1:I'm sure it was Abdullah the Butcher and he used to wrestle in proper hardcore matches where he'd cut his head Because in wrestling. They went to add drama to the match. They'd cut their own heads open and I think now, if you ever see it in a wrestling match, the referees instantly put gloves on, and there's all these health and safety measures if someone accidentally bleeds. And this wrestler was out in the days of Hulk Hogan, yeah yeah, appropriate.
Speaker 3:Tis Refsley yeah, I do remember that one. So, yeah, we're going to have a World Hepatitis Day Celebrity Gallery Ten celebrities who've had hepatitis C with a little bit of information about their experience. Larry Hagman's dead and then part of that was the liver disease you know a lot of them had liver transplants way too late just found, maybe necessarily enough knowledge or enough things around and the treatment was not the.
Speaker 3:The treatment even wasn't available. I mean, you look, you look at any of the history with these people and a huge number of them had liver transplants, probably because they were able to have liver transplants, because they had the funds.
Speaker 1:Yeah, well, that's it. And again, it's something that we've explored on this in terms of celebrities that were able to just check themselves into detox when they've got a drink or drug problem, and obviously, for the average person who doesn't have that money, it's the hoops that you, you need to have jumped through, but again, treatment would have been so different back then and again the cost implications to it as we spoke about absolutely there's a lot of factors there as well, and the people like pamela anderson, who is just uh up there for me now.
Speaker 3:You know I never watch Baywatch. I do know the famous scene of her running along the beach. But my God, this woman advocates for everything to do with Hep C that will get people treated and cured. She is such an ambassador, I would, as I've said to you guys before, I would give you the job of getting Pamela Anderson in this chair you would.
Speaker 1:That'd be nice. Is there anything else that you want to discuss today, anything that you want to share in regards to Epsi Awareness Week coming up?
Speaker 3:Just keep it at the front of your minds. Everyone. You know this is a global virus. Hepatitis C is the biggest killing virus after COVID-19. It can affect you, it can affect the people that you're living with, but we have treatment. We have an easy test and we have a cure. Please get tested today thank you.
Speaker 1:I'm going to finish with my series of questions that I like to ask, and my first question is what is your favorite word? Shenanigans least favorite word brown favorite sound or noise wood pigeon least favorite sound or noise someone doing a really phlegmy spit oh, yeah, with the proper yeah, yeah, dream job got it nice. What's the worst job you can imagine doing? Toilet cleaner I did that. Yeah, it was one of my first jobs when I was like 16. Scrubbing Honestly, sometimes I think they purposely shit next to the toilet as opposed to in the toilet, you know.
Speaker 1:It's just one of them things and what would you like to hear God say when you arrive at the pearly gates?
Speaker 3:Fuck off. It's not your time yet, no To be fair, funny enough.
Speaker 1:There's one question I missed then was what's your favourite curse word? You know it. There we go. Thank you, ellie. Thank you for joining me on Believe in People. Thank you, and if you've enjoyed this episode of the Believe in People podcast, we'd love for you to share it with others who might find it meaningful. Don't forget to hit that subscribe button so you never miss an episode. Leaving a review will help us reach more people and continue challenging stigma around addiction and recovery. For additional resources, insights and updates, explore the links in this episode description and to learn more about our mission and hear more incredible stories. You can visit us directly at believingpeoplepodcastcom.
