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This is a Renew original recording.
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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.
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My name is Matthew Butler and I'm your host, or, as I like to say, your facilitator.
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Today we're joined by Ellie making her third appearance on Believe in People.
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Few voices resonate with such consistency, clarity and compassion.
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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.
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She's a local legend in the truest sense passionate, knowledgeable and proudly committed to change.
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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.
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I start my conversation by asking Ellie what being in this line of work means to her.
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I love my job.
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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.
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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.
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But I also think about a thing called compassion fatigue, empathy fatigue.
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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.
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Yeah.
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Maybe eight years, I think.
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I've known you.
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I think it's eight years since we came and invaded your building.
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Exactly yeah, but you've always had that compassion, that empathy for doing what you do and that motivation behind it as well.
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So I suppose what do you think keeps that In an industry like this, where compassion fatigue is is an existing thing?
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What do you think it is about your role specifically that does keep you as motivated and as engaged as you are?
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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.
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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?
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And and inspiring, do you know?
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And we have so know inspiring, you know, and we have so many.
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I experienced so much success.
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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.
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But I think you know the big one for me is I've got a lot of freedom.
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I can use my eccentricities.
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It's welcomed, isn't it it?
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is it is, I'm allowed to just like go with it.
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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.
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And there's a big team of staff here.
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I think there's definitely between, I think is it?
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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.
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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.
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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?
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see mine's learned experience it's not, I've never injected drugs.
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Yeah, I've.
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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.
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I've never been an injector, but, uh, and I'm still learning, matt.
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You know, I'm still learning about injecting harm.
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I'm still learning about hepatitis.
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I'm still learning about all the all the things that that affect my role as a harm reduction recovery coordinator.
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But there is a place for lived experience too, I'm part of a duo.
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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.
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We are your perfect duo in the needle and syringe provision and I think you know we bounce off each other.
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There are many service users and a lot of different professionals in the past who thought I've been there, done it.
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You know, got the badge and that's a compliment.
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Yeah, the badge and that's a compliment, yeah yeah, absolutely.
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That's a compliment, because there is that real belief that you've got to be there.
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Done it until you've been in my shoes, but I've got empathy.
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Yeah.
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And that works just as well.
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Yeah.
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John's taught me things and.
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I've taught John things and we've shared our knowledge, and that just makes us a better, stronger team.
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Yeah, because empathy does go a long way.
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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.
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They are met with stigma.
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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.
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It's like, well, um, I've not been hit by a bus before, but I know that it would hurt.
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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.
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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.
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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.
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Similar.
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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.
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How long have you done this job now?
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31 years next month.
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So in that time you would have seen a lot of people come and go.
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Naturally, there could still be people accessing the service.
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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.
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These are all really preventable deaths.
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You know, none of our service users are generally dying a natural death at the end of the years.
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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.
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I mean, you were talking about analogies, my analogy for the lived, the argument for what's best, the lived experience, the learning experience.
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So this is actual fact.
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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.
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He was my real dad, but I never met him.
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And so I say to someone in the needle and syringe provision all right, we've both got dads that are dead.
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Man, shit dead dad Brian, because I didn't know him, it was shit.
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You've got a dad that you've just lost, say, and he meant the world to you.
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How's our experience of bereavement and grief?
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The same, because I haven't got any grief and yours is life-changing because your dad meant the world to you.
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So how can anyone's experience of addiction be the same?
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So that's my analogy.
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I love to bring my shit-dead dad Brian into this.
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No, that fucking shit-dead dad Brian is brilliant.
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I absolutely love that.
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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.
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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.
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But we do see people in services that have been using for 13 plus years.
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God, yeah, which is incredible to me.
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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.
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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.
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They're using street drugs and that's where we see the harm.
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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.
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And it's the same with people who have got hepatitis C and they don't.
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Either they're not being tested or they've been tested and they have got hep C and it's having the treatment.
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That's maybe a barrier for them and it doesn't need to be there.
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There are no barriers between um testing, treating and curing um hepatitis c.
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You know that of that of a massive passion of mine.
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Uh, some people call me a bit of a fanatic about it, and I think you have to be.
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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.
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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.
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Yeah, so it's okay.
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So here she is banging on about it again eyes roll, eyes roll, eyes roll, eyes roll.
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But there's something in that isn't there where?
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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.
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You know, this isn't just a a local issue this is a global issue and there are.
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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.
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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.
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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.
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Was it vietnam?
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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.
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Yeah, so that's an interesting thing to show the impacts that you're having.
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Yeah.
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That if you take.
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I mean, how long was you on holiday for?
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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.
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Yeah, I mean, I'm trying to share my.
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I'm trying to.
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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.
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Now it's completely different to when I had a caseload which I think was manageable.
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What was caseload?
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45.
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Okay, yeah.
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I worked with more complex, the more complex cohort of people.
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And is this like 30 years ago, when you started?
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No, no.
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So we can go back two services.
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Okay.
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So less than 10 years ago.
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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.
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But people have large caseloads now.
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But this service is the best service in terms of established yeah than any other service I've ever worked in.
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Why do you think that is, then, after 30 years of being in the?
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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.
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You can imagine.
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It was chaotic and awful for for for us as workers.
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I cannot, I can't, even begin to fathom the impact that had on on the people who need our service.
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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.
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You know.
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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.
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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.
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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.
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You know, obviously the roles change and the sectors change, and I think I mean, funny enough, I was talking about this last week.
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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.
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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.
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We recognize this as more of a health issue.
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Have you noticed that as something in the last?
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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.
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Initiative and it was the same with Foal Trust as well.
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That was the Rehabilitation and Prisoners Trust.
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So prison criminal, all those things was embedded into these organisations.
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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.
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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.
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So how on earth is that guy going to have any chance of breaking the chain?
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That used to be a project 30 years ago but breaking that cycle of committing crime.
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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?
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You're going to try and numb it in some way, aren't you?
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Absolutely, who wouldn't?
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Exactly.
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I think this is the thing that when we talk about the stigma, these are the parts that I really like to hammer.
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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.
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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.
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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.
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I mean, if you look at the people who have maybe been recalled.
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So if you're released from and this is I mean I'm not an expert on the criminal justice system.
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Of course, yeah, no, I'm not expecting you to be either.
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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.
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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.
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We hear it a lot unexpected prison release don't we Well, yeah, because there isn't any room in the prisons.
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The prison, yeah, that's something that comes up quite a lot in in treatment services.
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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.
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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.
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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.
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That's it.
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Yeah, I completely get that.
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I don't feel like they get enough credit for it.
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Really not judged for.
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That's it.
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Yeah, I completely get that.
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I don't feel like they get enough credit for it really in some way.
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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?
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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.
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We called it needle exchange then, not needle and syringe provision.
00:21:37.759 --> 00:21:41.221
Working in the Point, very famous needle exchange Is that the thing now needle and syringe provision?
00:21:41.240 --> 00:21:45.210
No needle and syringe provision working in the point very, very famous needle exchange in the central town needle and syringe provision.
00:21:45.951 --> 00:21:59.083
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.
00:21:59.083 --> 00:22:04.556
Okay, that goes against all.
00:22:04.556 --> 00:22:06.076
Nice guidelines.
00:22:06.076 --> 00:22:09.980
The people who use our needle and syringe provision.
00:22:09.980 --> 00:22:29.355
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.
00:22:31.295 --> 00:22:51.801
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.
00:22:51.821 --> 00:22:57.319
Share needles yeah, yeah that's interesting, yeah and and that's what we're trying to.
00:22:57.319 --> 00:23:00.548
That's what we're trying to completely change.
00:23:00.548 --> 00:23:04.365
People don't have to return to get as many works as they need.
00:23:04.365 --> 00:23:14.747
If we want to eradicate hepatitis C, eliminate hepatitis C by 2030, we can't.
00:23:15.016 --> 00:23:17.555
You can't be putting roadblocks in the way and stuff like that.
00:23:17.555 --> 00:23:19.101
You need to make it as accessible as possible.
00:23:19.161 --> 00:23:19.723
Absolutely.
00:23:20.075 --> 00:23:25.142
Sorry, I kind of derailed your advice to younger self by asking that question, but go on.
00:23:25.736 --> 00:23:30.807
My advice to my younger self would be do more homework in your early days.
00:23:30.807 --> 00:23:40.186
Learn more about injecting in my early days and more about the physiology of it, the effects of it.
00:23:40.186 --> 00:23:52.464
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.
00:23:52.464 --> 00:23:53.247
And that was it.
00:23:53.247 --> 00:24:02.567
There was a lot of advice given, but it wasn't anywhere on the depth and expertise that we have now.
00:24:02.934 --> 00:24:06.864
Is that because the sector just didn't know enough, or do you feel like you didn't know enough?
00:24:06.864 --> 00:24:07.365
Personally?
00:24:07.365 --> 00:24:08.807
Both, really, both.
00:24:09.875 --> 00:24:17.008
So as time goes by, we generally get better at things and I think definitely in harm reduction.
00:24:17.128 --> 00:24:22.641
We are getting better and better and how do the facilities compare to what you're used to doing?
00:24:22.641 --> 00:24:33.156
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.
00:24:33.616 --> 00:24:35.159
In fact, you can go some.
00:24:35.159 --> 00:24:36.500
I think it's in New York.
00:24:36.500 --> 00:24:48.085
There's a needle and syringe provision provided by users and I think it's got a very funny name.
00:24:48.085 --> 00:24:52.881
Oh, I can't remember it now.
00:24:52.901 --> 00:24:53.383
I'll find it.
00:24:53.403 --> 00:24:58.045
Yeah, it's something like sticks on wheels or something like that.
00:24:58.045 --> 00:25:00.800
I watched this documentary.
00:25:00.800 --> 00:25:11.990
There's someone absolutely off their tits yeah, literally off the tits and wobbling around on a bicycle dishing out clean injecting equipment.
00:25:11.990 --> 00:25:12.632
Do you know what?
00:25:12.632 --> 00:25:26.865
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.
00:25:27.047 --> 00:25:27.468
I get that.
00:25:27.468 --> 00:25:27.989
Bring it on.
00:25:27.989 --> 00:25:33.583
It's just funny the idea of someone being massively under the influence going round and passing clean works.
00:25:33.583 --> 00:25:35.181
This one on the back of a little bicycle.
00:25:35.181 --> 00:25:43.227
Yeah, what sort of myths and misunderstandings about Hep C still frustrate you the most after 30 years of being in this sector.
00:25:44.155 --> 00:25:49.647
There is still the misunderstanding that Hepatitis C cannot be cured.
00:25:49.647 --> 00:25:53.462
Treatment in the past was horrific.
00:25:53.462 --> 00:26:11.780
It was less than 50% successful and it was interferon, which was a form of chemotherapy, basically, and the treatment was around a year.
00:26:11.780 --> 00:26:17.007
People would experience the side effects that you get with chemotherapy.
00:26:17.518 --> 00:26:21.259
So one of our colleagues was just saying this morning about one of our friends losing all her.
00:26:21.259 --> 00:26:23.644
Yeah, yeah, yeah, I've known.
00:26:23.723 --> 00:26:38.028
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.
00:26:38.028 --> 00:26:44.182
Now it's a course of tablets for 8 to 12 weeks and it's we could.
