Narrator: This podcast is intended to support UK healthcare professionals with education. The information provided in this podcast is not a substitute for professional medical advice or treatment, and patients are encouraged to consult healthcare providers, including nurses, for any medical questions they may have.

or concerns.

Hannah: Welcome to stoma and continence conversations from coloplast professional where health care professionals and experts by experience discuss the latest hot topics in the worlds of stoma, continence care and specialist practice. I'm Hannah Patterson, I've worked in specialist care and I'm currently the ostomy care associate education manager at coloplast.

Today, I'm joined by my colleague from Coloplast Professional, Paul Russell Roberts, and we are here to talk about empowering ostomates, a subject that we are both very passionate about.

Paul: As someone's self care confidence grows, individuals are actually less likely to seek medical attention and relying on the healthcare system.

I know personally, I'm not a finger whacker. I'll never say to any of my patients, you must do this. very much. This is what you must do. That's not collaborative. That's not empowering.

Hannah: Thank you for coming to join me today. This is a topic I think that we're both really really invested in from various means and ways.

I think I'm going to hand over to you I think to start with Paul to kind of introduce this as a subject and then I will inevitably chip in as I can't help it.

Paul: Today I want to be talking about patient empowerment and the empowered patient and I think the word or the term patient empowerment is actually bounded around Quite a lot, but what I like to do every so often is almost hit a reset button and actually think to myself, what do we mean by patient empowerment?

What does it do? Why should we be doing it? What does it mean? All of those things. So almost have a little sit back and think about what patient empowerment means and what patient empowerment means. to you, because patient empowerment, it's, it really is a concept which is focused on patient centeredness and patient autonomy.

And it has been so well discussed in healthcare literature. If you just put patient empowerment into a pub med search or anything like that, you will find reams and reams and reams of literature. But I think sometimes patient empowerment and this patient centeredness. When you do look at the literature, it can be difficult putting that theory into practice in a cohesive way, in a cohesive format that formulates this therapeutic relationship between you as the healthcare professional and the ostoma, or the person that you're talking to that, you know, the individual that you're caring for at the time.

We know that there's so many benefits to for patient empowerment, you know, things such as, you know, as someone's self care confidence grows, individuals are actually less likely to seek medical attention and relying on the health care system. And we know that there are so many. Pulls on resources at the moment that if we can try to reduce some of those pulls on services, it's going to be better for everybody in the long run.

So if we can break some of these dependencies in this dependency cycle, they can actually yield substantial health and health care advantages. And again, from the literature, when you look at the literature, patient care thrives on this collaboration and this mutual respect between healthcare provider and patients.

And patient empowerment rebalances some of this, this, this collaboration, this collaborative relationship that people can have. And the adherence to care, um, acting in concordance with care, because we're not finger waggers, you know, I, I know. Personally, I'm not a finger whacker. I'll never say to any of my patients, you must do this.

This is what you must do. That's not collaborative. That's not empowering. It's providing that information that that patient with the information they need to take control of their crop, potentially chronic. condition, their long term conditions, be that heart disease, renal disease, anything at all. You know, it's providing that fostering and that environment where this collaborative relationship can blossom and it can grow.

One of the things that I think we We need to be able to be very much aware of is bias as well. Um, and that's conscious and subconscious bias. One of the things that I always kind of think to myself again when I do see patients and when I'm talking about empowerment is things like the digital revolution and it's this understanding that just because somebody's in their seventies, eighties, et cetera, it doesn't mean that they're going to be for want of better words, right?

Digitally inept and by providing them with digital resources, digital tools, it really can support their empowerment. And that's just one example of, you know, how even myself, when I think back, how. I communicate, and one of the reasons I'm so pleased that I do press this reset button every so often is, am I potentially ageist?

Have I got this unconscious bias that the more senior people I care for have got these blanks in their knowledge and, but, Then I always think to myself, can I support that, you know, can I support them and in their empowerment? So, you know, I think it's a really, really important thing we do that we think about empowerment, because again, when you look, when you dig down through all the literature, we know that, you know, the empowered individual has reduced post operative pain, they've got reduced infection rates, they've got reduced length of stay, they've got reduced readmission rates.

All of these together, you know, can have a massive, massive impact on both the individual. And as I said, the healthcare provider, um, and the hospital as well. So there are so many. Different positives that can come out from patient empowerment and this collaborative, um, relationship. So one of the things I want to kind of focus in on another example, so along the lines of, you know, understanding people's, you know, the digital revolution and all those sorts of things, if leakage.

You know, an ostomy leakage. And I know that both Hannah and I, we're constantly talking about leakage and we're talking about the challenging challenges of leakage. And we, you know, we are focusing on, we need to focus in on this burden of leakage, this emotional and psychological burden of leakage. And in the 2019 ostomy life study, Very, very much focused in on the worry of leakage leakage.

And some of the stats that came out of this paper were really quite concerning. One of them is 92 percent of ostomates worry about leakage. And I don't know about you, you know, but. 92 percent worry about leakage. That's, it's a ridiculously high amount. 76 percent experience leakage under the base plate at least once a month and 26 experience leakage onto their clothes at least once a month as well.

So when you look at those numbers, how can we empower these individuals to take Back control, how can we empower these individuals to live the lives that they want to live without that, without compromise, without that worry of leakage and some more of the data that came out from the, as I said, the ostomy life study 2019, which is available on the cold class professional website, coloplast professional. co. uk. But 54 percent of individuals aren't able to sleep because of the worry of leakage. 37 percent feel they're not in control. So this is a direct, we were able to directly compare here, you know, patient empowerment, that feeling of control being in control or 37 percent feel they're not in control and 25 percent feel they're unable to cope.

So. Next time, you know, potentially you're looking after someone and you're talking about leakage and you're talking about what the effect leakage is having and this burden of leakage, it's not just the physical leakage and the associated peristalmal skin conditions. It's the burden of leakage as well.

So some obviously people don't have to have leakage to worry about leakage and just a couple of other little statistics here. Um, so it's like 20 percent of individuals stay at home. Because again, this all comes down to leakage and the worry of leakage. And one of the most upsetting ones for me personally is 15 percent of individuals avoid close physical contact with family and friends.

Hannah, I know from your personal experience, I know that there is a tongue in cheek, amusing story, which is actually, you know, yes, it's, she, she says it in such an amusing way, but it was a story that really did affect you. It's a situation that really did affect you. So Hannah, I'm going to hand it over to you when it comes to your, to your leakage experience.

Hannah: So I always revert back to very early days of my stoma. I'd probably only been out of hospital less than a week, I would say, still at a point where I couldn't really get upstairs. I was sleeping on a bed set in the living room. And, um, I was awoken, as a lot of ostomates will appreciate, in a, shall we say a grubby fashion, by an exploding stoma bag.

Exploded to the point where mattress had to go in the bin, bedding gone, had to be fully stripped down, washed down. And also at that point as well, the, uh, cat also joined in the proceedings, jumped on the bed and threw up on the bed at the same time as well. But, As much as now I look back on that and it's almost, it is laughable, as Paul said, tongue in cheek, I do look back at that and think that does sound like some sort of like stand up comedy show.

But what it did do was it really framed almost those last lot of statistics that you discussed there, Paul. I didn't sleep at night. I certainly couldn't cope with things. I did avoid contact with people. All those statistics. Yes, we can say they're alarming, but actually I experienced them, so why am I alarmed by that?

I think it does just show how these early experiences do really affect long term. I can honestly say I don't remember any other particular episodes of leakage after that. I don't, there were none that really stand out as being horrific, but that one, that very first one, I can almost remember it like it happened yesterday, and yet it was 13 years ago.

But that's how clear it is to me, that. But I'm sure I probably did have leaks for the remaining 18 months, but none of them stand out, and none of them affected me in the way that that one did.

Paul: Yeah, I think it's really interesting when you said that, you know, you can't remember, you almost can't remember any other leaks.

But is that, you know, It's just that one episode that really did affect you. And, you know, so almost again, what I'd like to kind of focus in there is, you know, we're talking about patient empowerment and, you know, this collaborative approach to care, to support this patient empowerment. So, you know, you only had, you can only really remember that one catastrophic episode of leaks.

From an empowerment point of view, how in control of your life after that event did you feel? Or did it affect how you felt, whether you were in control or not?

Hannah: Oh, absolutely. I mean, from external, anyone that looked at me would have said I was coping and in perfect control. Inside, the internal monologue in my head, it was constantly in my head.

Externally, I'd say to Joe Bloggs out on the street, they'd have gone, Do you know what, you're coping really well with all this. Yeah, to the big wide world I probably was, but inside, it was taking all my strength not to almost fall apart on a daily basis with that worry. I was functioning on such little amount of sleep.

My brain was always going at a hundred miles an hour. I never felt relaxed. I was always, the way I compare it now, it's always a bit like a cat on a hot tin roof almost, almost permanent red alert. Every time I felt anything, I thought, is that a leak? Is that a leak? I changed my bag. It wasn't a leak. But I got myself that convinced that every little feeling I felt was a leak.

That it, yeah, I'd probably say at the time I thought I was coping really well. But now looking back on it, I wasn't coping. I just created a brand new way of existing, really. I wouldn't say that was coping. I was existing.

Paul: I think it's a really interesting way, the way, you know, really interesting thing that the way you say, you know, you exist, it's almost, you know, you existed rather than lived.

And I think, you know, again, it's one of those ones where I think lots of times people can potentially mix those words up. And the definition of those two words are living isn't existing, you know, existing is just existing.

Hannah: Did it stop me doing anything? No. Did I enjoy doing the things that I was doing as much as I did before?

Absolutely not. But that's when it boils down to the existence. I wasn't going to let it stop me doing anything, but it certainly curtailed the way I felt about doing them. I was doing them more out of, I suppose, a bloody mindedness thing than anything else, which I know probably really shocks you to for me being bloody minded.

I'm. Shocking.

Paul: Shocking.

Hannah: Coloplast Professional offers a lot of educational material for specialists, nurses, and healthcare professionals. Visit coloplastprofessional. co. uk to find out more.

Paul: Yeah, we're looking at patient empowerment and like I said at the start, one of the focuses of patient empowerment is this.

Patient centered, patient centric approach to care, which I know that all health care professionals want to do. They want to provide this patient centric, this patient, you know, this empowered individual. If you can remember back, did you feel empowered? And can you remember any situations where potentially a health care provider, you know, health care professional, you felt empowered by them?

Or did you feel that, you know, and again, it's no disrespect, was there, did you find that there was something missing, something lacking?

Hannah: I would say I had a fantastic group of stoma nurses at Heartlands in Birmingham. They were absolutely brilliant and they could not have done anything more for me. After my leaks, I had my pouch system changed, but unfortunately what they couldn't fix was the way my head was then just in the gate.

And I think it almost became to that point with me, it was like a habit and that was, That was it then. It was ingrained as part of my lifestyle then. And that to me, I suppose, at the time, like I said, it was me being empowered because I was coping, I was doing it. And if they'd said to me, are you coping well?

Yeah, I'm doing really well. But, you know what I say, looking at it in a deeper way, no, I wasn't doing well, but because I was still doing what I was doing, it came across like that. But mentally, Absolutely not.

Paul: And I think it's really, really interesting, again, from, from personal practice. You know, I see that so many times and I think, you know, as healthcare professionals, we become attuned, don't we, to the difference between what a patient says and how their body language comes across.

And I think it's one of the skills of the specialist practitioner is being able to look. underneath the verbal, isn't it? And providing that nurturing environment where you can empower the individual to, to take control and to reaffirm life is for living, not just for existing. I think, you know, when we look at patient centered care and we focus down onto the ostoma, obviously, you know, we talk about stoma and stoma care and the ostoma, and we know that ostomas require individualized, person centered care.

evidence based care, and this can be facilitated and supported by validated tools. I'm going to get on my little validated tool, uh, soapbox here.

Hannah: See, this is why I've got you on this podcast.

Paul: Exactly, exactly. I think it's, and people, you know, you think to yourself, well, hold on, validated tools. Patient empowerment, how, you know, where's the link and trust me, there is a link.

There is a really, really, in my opinion, a really powerful link. So, you know, we always say that we do individualized, person centered, evidence based care. How do we do this? Well, we can use validated assessment tools, things like The body profile assessment, the stoma quality of life, the ostomy skin tool or the debt.

And we've got things like the OLI as well, which is the ostomy leakage impact tool. And I'm really, really pleased that there is now another tool that is coming out that is in the process of being validated. So I can't say it's a validated tool as yet, but it is, it is a tool and it's a fantastic tool to, as I say, be able to dig down that little bit deeper.

deeper for people specifically like you, Hannah. And I think it's a tool that I think that your, your stoma nurses would have really appreciated back then as well, where, you know, On the outside, you came across as this person who was coping incredibly well, no problems, et cetera, et cetera. I'm going to come back to the new tool called the LIA tool, but what I just want to kind of again focus down on, and please, again, if you want to know more about validated tools, we've got a plethora of podcasts and webinars where we talk about validated tools and the use of validated tools.

So again, coloplastprofessional. co. uk, because we've, we talk a lot, again, about, quantitative data, and there is a massive need on this drive for quantitative data within health care and specifically within stoma care. And by using tools were able to Establish a baseline of this baseline measurement for the effectiveness of care and the progression of care over time and unless we can prove that what we're doing works what we're doing is making a difference to people's lives.

It's very, very difficult for us to justify our roles sometimes. So, you know, validated tools do not take away from the vital role and the expert clinical knowledge of nurse specialists. What it does do is it provides the evidence behind care and supports and validates the care that they provide. So the utilization of validated tools, in my opinion, is essential within stoma care, and it is essential in providing this person centered care in empowering people.

And, you know, a lot of the times when I'm doing patient assessments, I will actually talk through the validated tool and I will say, right, I'm going to, there's a tool here that I use now and it's called the, you know, the debt tool or the ostomy skin tool. So what I'm looking at is, and then I will go through it and I will talk the individual through it.

So they know exactly what I'm looking at. They know exactly what I'm looking for. And hopefully by providing that information that, you know, the informed, the informed ostoma, hopefully, You know, feels empowered because we know that, you know, one of the big things of empowerment is having the information and being able to make this informed decision.

And again, informed decision is some, is a term that is banded around the healthcare settings so often, you know, but how many times do we act? And again, it's one of those ones where I'd like people to kind of think and reflect about that. Bye. You know, when was the last time you actually, when you were assessing a patient, you went through and you, so I told them what you were seeing, okay.

It's not always appropriate, but you know, there's so many times where it is, right, this is what I can see. I feel this is caused by this. What I'd like to do is. Introduce this or what I'd like to do is take away that and it's providing them with that information yet and you are an expert and they are a novice most of the time, you know, that's why they've come to see you, you know, it's, you know, there is this imbalance, but hopefully by providing information in this really Okay.

good structured way, you are able to support that patient empowerment and that patient centric, that patient centered approach to care. So what I'd like to do now is just take you on a little journey with the new tool, which is called the Leakage Impact Assessment Tool or the LEA tool for short. It's designed around the need to assess both the potential and Actual negative impact of leakage.

So, like I said, when you know, when with you, Hannah, when you were saying, you know, it came across as you were coping really well and yet getting on fine with life with a stoma, but these questions do really open up that discussion. So, for instance, you know, one of the first questions is. I worry I'm going to leak, you know, and you know, it's on a scale of one to five, one being never five being continually and you know, it sounds quite obvious, but you know, I always used to say, have you leaked?

Have you experienced any leakage? But only when I dig down that, you know, when I've reflected on my practice. Did, how many times did I follow that up with, even if they've said no, how many times have I followed that up with the question of, do you worry about, worry that you're going to leak?

Hannah: That worry.

Paul: Yeah. And I think that's it, you know, and it's again, I'll, I'll throw it back to you. Um, you Hannah, I said, I know you said, you know, you had a fantastic team behind you and supporting you, but how many times have you actually asked that question? How many times were you asked, have you leaked? And how many times were you asked, do you worry that you're going to leak?

Hannah: I can honestly say, I don't ever remember being asked, do I worry about it? I remember being asked multiple times, do you leak? And it makes me think back to even my own time working in the hospital. How many times did I actually ask a patient, did they worry about it? Or was it just Are you leaking? It does make you think, and I absolutely love this, the layer assessment because when I look down the questions there, I would score have scored ridiculously high on it.

Yeah. But actually on normal impact tools, I probably have scored relatively low because I wasn't. I wasn't stopping doing things, but this is more what I really find from the leakage impact assessment, the layer is it really looks at that mental side of things. It's not just the physical aspect. This is the first time for me looking at it from my previous experience that would really have almost kind of looked at how I was feeling.

This to me is where I was at and what I needed.

Paul: Yeah, and I think, you know, it's, you know, and it's, and it isn't, you know, and again, you've touched on it as well, you know, when you said, you know, really honest, responsive, you know, when you were, when you were in the acute setting, you know, you always used to ask people, you know, have you had any leaks, they'd say.

No, I need to go fantastic. Really pleased about that. And then you'd move on, wouldn't you? You know, but you know, it's that question of, okay, you haven't had any leaks. But do you worry that you're going to leak? You know, I think the lead that you know, the lead at all is fantastic, because some of the other questions will actually, you know, it's so sure I can actually go through all of them.

So yeah, you got the first question is I worry I'm going to leak. Next one is I feel overwhelmed. I mean, I am unable to sleep. I check my stoma bag for leakage. I change my bag before it is needed just in case it may leak. I choose to stay at home. I avoid close physical contact with family and friends. I struggle to do the things that I enjoy and I struggle with my daily responsibilities stroke work.

That's it.

Hannah: Now when I look at that from my point of view, the only one I probably wouldn't have scored wrong I choose to stay at home and I said that was more out of a Bloody mind didn't say anything else, but everything else I'd have been a four or a five on.

Paul: Yeah. And that's why I love the power of validated tools or the, you know, I said, sorry, actually, this one isn't validated as yet is in the process of being validated.

And hopefully, if you're listening to this podcast in a few months time, you know, it would have been validated by then, but it validated tools. Like I said, are fantastic at supporting the clinical, your clinical judgment. It's an aid memoir to ask those probing questions, because at the heart of nursing, at the heart of care, is curiosity.

And, you know, people say, what do you mean by, what do you mean by curiosity? Well, the reason why you take someone's blood pressure, Is because you're curious at what it is. The reason you take someone's pulse is you need to be you're curious at what it is. The reason why you ask anything is through curiosity.

But I think what we need to do as healthcare professionals is increase that curiosity. And I think by increasing curiosity. You know, it does support that patient centered care and that case of patient empowerment. And I think, you know, using validated tools, ensuring that we can prove our worth, justify our roles, which unfortunately, whether you like to think about you have to or not.

Unfortunately, you've got to, we have to as, as specialists justify our roles in this modern world, you know, we need to move forward. And so for us to empower the people that we care for, provide that patient centered care, we need to reflect. And I think that hopefully during, you know, during this, people have been Reflecting have been asking those questions and i think we are fantastic at what we do and i think that we just need to be able to every so often pause, reflect and almost ask yourself the question am i being curious enough and, Am I working in collaboration with my patients or am I dictating to my patients?

And yes, there's a time for dictation. I'm not saying there isn't, you know, there is a time where we need to take control of a situation before it spirals, but then it's being able to give up that control again and re empower and make sure that it is patient centered. So there we go. Patient empowerment.

It's an awesome topic.

Hannah: Absolutely. And I think it's really nice. This is the last episode in our current season as well. So we'll be taking a little break now. So actually, that thing you were saying, pausing, is actually quite Apt, actually, because we'll be taking a pause now for a few weeks before the next one comes around.

Hopefully, we may well have a bit more news on Leah being a validated tool at that point. Hopefully. Thank you so much, Paul, for joining me today. It's I always love looking into this side of things with you because so you are by far I bow down to when it comes to validated tools you are the king of the validated tools and I would not have anybody else speaking about them.

Paul: Oh you're too kind.

Hannah: But thank you ever so much and thank you to everyone listening and we will be back later on in the year with the next series. Thank you for listening. To see more of the wide variety of education we offer, please visit coloplastprofessional.co.uk. See you next time.

Narrator: StomaContinencenants Conversations is a Vibrant Sound Media production for Coloplast Professional.