Inclusion health or ‘caring on the margins’ part II

So yes, thanks very much, John. I’m going to talk a wee bit about my personal experience. Hopefully you can all see this slide. Might not have long enough to pause to allow everybody to read it, but I believe the slides will be getting sent out. And this is basically a bit of a snapshot of the day in the life that I used to lead, to be quite frank. And I think the heading is quite telling. And it’s obviously quite stigmatising, and some of the other language in the article itself is quite stigmatising.

I spent a lot of years in the street, I spent a lot of years struggling to access primary health care services, specialist health care services. I’ve got experience of quite chronic infections, I had osteomyelitis and avascular necrosis in my legs. And I remember one memory of being in a ward stands out, probably more than all the rest, with a consultant and him coming to me and not asking me to stop using, just asking me to stop injecting. Which I seemed to be totally incapable of doing at the time.

And he said he’d been in consultations with the registrar, and that there was a bit of a division in the team, and that some of the team didn’t want him to operate and put implants in my hip because of the behaviours I was displaying and the likelihood of recurring infections and continued consequences from my injecting behaviour. And he actually did, he did go ahead and operate. And that memory for me just really stands out because I knew my leg was in jeopardy. I didn’t want to lose it, but at that time I was completely and totally incapable of stopping the behaviour that I was displaying.

I couldn’t even consider smoking or any other route of using the substances I was using. And I don’t really say that for dramatic effect. I just say that, I think, to try and convey that a lot of the time patients that you may very well be working with, currently or in the future, it’s not really an informed choice, it’s not really a consenting choice for a lot of people to carry on, if that makes any sense. It’s almost, that’s the default position. I speak quite often about I wasn’t running towards pleasure when I was using, I was running away from pain.

And I think just even comprehending that idea, it can sometimes shift our perception of people and the behaviours that they’re displaying. I’m very mindful I’ve got very short time.

I know for myself, until I found services and professionals that I deemed to be accepting of me with the behaviour that I was displaying, change was totally impossible. And this is just one person’s journey, one person’s experience. I don’t profess to speak for other people that may have experienced similar issues or similar experiences. But I know for me, I would go to specialist drug services, and often I’d be turned away because I was too under the influence, or I’d given too many positive tests.

And the irony of that’s not lost on me, I don’t think. I had a massive problem with using drugs and I was going to the places I was told to go to help me with that problem. And not always, but sometimes, any behaviour was enough to discount me from receiving that help, I suppose, or receiving those services that were designed and geared up to provide that. I’m going to move on to another slide. This is fast-forwarded probably five or six years from the previous one. I was a little bit more stable.

The big issue has got quite a special place in my heart, I think because the support they were giving me was not attached, other than vending the magazine, was not attached to any other service. So I felt I could be totally upfront and nice with them about my using and stuff like that. Yeah, my professional history is I went into a treatment centre and I volunteered for them for a while.

I worked for them for a couple of years, and then I was very fortunate to be involved in the SHARPS study, which was Supporting Harm Reduction through Peer Support, and a fixed-term pilot to assess the feasibility and acceptability of using people with lived experience in a harm reduction support worker role. And part of the role was to be disclosing lived experience to other professionals and people we were offering support to. And again, I was able to– basically my role was to, with the manager of health services, identify people that seemed to be not engaged anywhere else, that seemed to be experiencing problematic use and/or homelessness, self-defined problematic use.

And I think that’s quite important that they would identify as having problem use, and just offer them support. Whatever way, shape, or form that took. The agreement was very, very open. And I think that was really, really important because there was no other service attached to our relationship. And I often speak about any supportive relationship, especially with the types of patients that will go to John, any supportive relationship is harm reduction. Whether you’re imparting specific harm reduction advice or equipment or not. My take on it is that is massive harm reduction. And these people are massively disenfranchised. They feel stigmatised and marginalised, they feel like no one is that interested.

And to be able to show interest without it being attached to any formal service, or bed, or prescription, or whatever it might be, was really, really quite special. I used to see my role very often as trying to be a buffer between the person and the service, best place to offer them the practical medical advice, benefits advice, housing, whatever it might be. And even in light of COVID, I mean to me, COVID just put a big magnifying glass on the socioeconomic divide, the inverse care law, all that kind of stuff was just massively spotlighted in my opinion. And the gap was wider. And that was what I saw the vast majority my role as being.

I mean, having good, working partnership relationships. By proxy, people would then start to trust a service they’d never been to, or had heard negative comments about from their peer group, because they had some trust in us as being navigators. And again, I think it all comes down to that relationship. Until I felt accepted with the behaviours I was displaying, there really wasn’t much room for manoeuvre. I’m going to move on to the last slide. This is me preparing to speak at the Pathways from Homelessness conference with Dr. Rebecca. It was a research fellow to our study, and this is one of my fondest memories of that time doing that role.

And it’s been an incredible journey, and both aspects of the journey inform my practise, I still work in services, and my experience informs my practise on a daily basis. So does coming from a professional background too, and I just think any dialogue that gets everyone around the table without anyone thinking anyone else is the expert. Sometimes you hear the phrase, “Expert by experience”. I’m only an expert in my own experience, I’m certainly not an expert in addiction or homelessness. I hope someone’s got something from what I’ve said, but I’ll leave it there. Thank you.