Our research in regard to patient experiences within a Leg Club® setting Part 2

My research was looking specifically at the role of social interaction in the generation of what I define as social value, which is not a value to the individual, but it's the collective value that emerges from interactions. You know, the saying that the whole is greater than the sum of its parts. It's this idea in understanding collecting, in understanding social value in the leg clubs. I did a qualitative study that used soft ethnographic methods. I attended six leg clubs in the UK over the course of about three months, three and a half months, between October 2019 And January, mid-January 2020, so actually shortly before COVID hit the UK, I attended the leg clubs on a fortnightly basis because of their geographical location, I wasn't able to attend them on a week-by-week basis. I did travel quite a lot around the UK. I watched what went on in the leg clubs. I always stayed on the social side rather than the clinical side, unless I was explicitly invited by members and nurses to go over to the clinical side, just to have a feel for what went on over there. I sat with members and volunteers on the social side, and I was a member. I was drinking tea, I was having cake, I was taking part in raffles, I was chatting. I was even helping with cleaning up sometimes, moving the tables and chairs around after the leg club. ended. I really, really wanted to stay a bit longer but time was tight and I needed to move on with the write-up of the study, which I described in a report that was published that's available on the website of the Lindsay Lacknapp Foundation. The PhD itself, and I should have started with that, was funded by the LegClub industry partner, Molenski Health Care. And my LegClub was facilitated by the Welshman Innovation Centre. And I conducted everything in collaboration with the business school. I wrote my report with a specific focus on those dimensions of social value that observed in the leg clubs and I speak to four. Collective learning, of which I've just spoken, safeguarding health, a sense of community and giving older individuals an opportunity to remain active members of the society in later life. I wrote up the study with use of quotes that I noted down when I was in the leg clubs. I did not interview anybody in a sort of formal setting where you take recordings of the conversations I was having gentle chats with people and I was taking notes so the quotes in my report are paraphrased rather than word for word but every effort was made to make sure that they were as close to the context in which they are verbalized as possible. The collective learning I've already told you about. Safeguarding health was in relation to how the leg clubs do so much more than just provide a space for people to have their dressings changed. It is a place which improves people's well-being because it's informal, because it's relaxed, because it gives individuals the space to be creative and around the leg club as they want. Because it's an open space and that was very much stressed to me. The idea that members who were at first apprehensive about coming to the leg club because they had never heard of the place before, how much they liked the idea of being able to see what happens on the clinical side. Some members compared it to a modern open restaurant when you can see what goes on in the kitchen. So, transparency of everything is a lot greater and you know when your food is coming because you know that the chefs are hard at work. That's how they compared, that's how they explained the value of having this open letter club setting, that members knew when their turn would come because everything was open, because they could see the words were hard at hand, because they could kind of work out when they would be seen given the time that they arrived at the leg club at, that they weren't huffing and puffing as they said, impatiently you know tapping their feet on the floor because they didn't know when they would be seen, because they could just chat and have a cup of coffee and a cup of tea. There wasn't the white coat effect because it wasn't a medical space and of course infection control protocols were very clear idea too that goes without saying but because the leg clubs don't happen in a medical space a lot of the stress associated with going to the doctors was taken away and you know how much more leg clubs do for people in terms of other health services like flu jabs and depending on the physical space where the leg clap is happening, maybe even blood tests, being able to have your pressure checks for instance. So there's a lot more that can be done via the leg clap. And you don't need to have a wound either to go to the leg clap, you can just have pain or rush or something. It doesn't have to be a non-healing, unsightful, smelly wound. It can just be a pain in the ankle and you've got a place to go to, to alleviate your concern. It's a place where you can get a referral to see a physiotherapist if you need to, for a pain in the knee or something. So there's a lot more than that, a lot more than just wound care. The next thing, collective sense of community. I mean, where do I even begin, right? Every single member and every single volunteer I spoke to just said to me, when I asked them, what has it been for you? What has it been like for you to come to this club? Well, it's a social occasion, first and foremost, isn't it? Now, the number of times I heard it, if I got a pound for every time I heard it, I would be rich. It is a social occasion. It's a place for people to go to, whether or not they have one, it's where people make friends. And I witnessed that myself as well, members exchanging phone numbers, making arrangements for tea and coffee. I mean, you could go on, couldn't you? about. Yeah, and I think also that the hardest thing, you know, listening to what you're saying now and also looking at what I'm going to say is that it's so difficult in this current pandemic because, you know, that social model is so important to the member, you know, to their wound care journey or to that social interaction as human beings, you know, we thrive on a good I want to think of it as something as a place of joy because it is a place of joy for these leg club members. You know, I mean, I'm sure you're going to tell me more now but in their stories and in their experiences some of them have had leg ulcers for like 30 plus years until they discovered the leg club. Then all of a sudden, three months later this wound that was there has healed. And you know, it's like a phenomena for them. So yeah, that social interaction is so important. And I'm sure you could, you know, we could be here for hours. I mean, from the stuff that you've collated and the rich data that you have on it. Absolutely. I spent some time at leg clubs shortly before Christmas as well, and every leg club that I went to had a Christmas event. Oh, that was like the best time. It was joyful, it was sweet, it was delightful, we had carol singers, we had meals, we had all sorts, we had Christmas presents. So these are the fondest memories of doing ethnographic research in the leg clubs. I think there are beautiful places of happiness. People can choose when they go to their leg club. They are in control of when they go. They are in control of how the leg club is run. People who have retired, who haven't got wounds at all, but they have got time that they would like to give to other people, can go to the leg club and volunteer, interact with other individuals. the wealth of knowledge that everybody brings with them as well, those individuals who used to work as, you know, engineers and pilots and teachers and who used to serve in the army, the stories that I heard were very educational for me as well. And that's another thing that the value of the the leg clubs brings. Another dimension of the value of the leg clubs, rather, is this potential of the leg club to give older individuals a space for continued societal functioning. People have stopped working who might feel that maybe they haven't got much more to give to the society because of the way that the society is structured these days. We've heard a lot on the news media about ageism as well. the enforced social isolation for older adults, especially now in times of the pandemic, older individuals are given a space in which they can engage with the society in a meaningful way. They can design a logo for their leg clubs, or they can organize a charity event for their leg clubs. Or if they worked in, say, I don't know, social benefits, they can offer sessions, information sessions for other members. So Abdul, tell us a bit about your specific research in the LEC labs, please. Most of my work was quantitative work, looking at the knowledge and attitudes of the various clinicians in wound care and how they treat the various types of wound beds, how they treat an infected wound and what sort of antimicrobials they use. So it was a natural progression to find out that information, but supplement that information with the patient's experience. And the antimicrobial that I used as a vehicle was medical grade honey, mostly Manuka honey. And so I created this semi-structured interview schedule and I obviously used the psychological method, interpretive immunological analysis because I wanted to look at patients' experiences. I wanted to capture those meanings that they had from the experiences of using this medical grade honey. And, you know, in my interpretation, I found that Lead Club members, they had the sense of desperation. I mean, one of the members said, you know, Abdul, I would use anything, even if it was a bunch of wild roots, and you put it on my wound, as long as it took the pain away and as long as it healed my wound. So they started off by talking about this, the sense of desperation as a major theme. and then they went into the fact that honey had these benefits. But before they got onto the attributes of honey, what they did talk about was the leg club. So that empowered educating that collective, holistic treatment that they received from the leg club. That was a theme that came before they talked about the experience of honey. Because in the participants I had, some used honey and never continued with it because of stinging joint sensations and some used it and their wounds healed. But I think the most important thing in the themes was that leg club was that place where they had that social interaction, where they had the empowerment, where they were educated on all the antimicrobials that were there, where they got to speak to their colleagues or their friends and say, so you're using X, Y, and Z on your wound, how are you finding it? So, you know, they were educating and empowering themselves and they were engaging with their treatment. And as we spoke earlier, you know, they had these wounds that were, maybe they're like pressure ulcers or venous leg ulcers. They were there for like years. And all of a sudden they become empowered. They have the social interaction in the leg club and then the wound heals within three months to six months and even sooner. And for them, it was exhilarating and uplifting that it was a revelation, as I said, one participant said. And then, so the leg club had a rich meaning for the members not only because of those social interactions and that empowering engagement, but those experience are very prudent to evidence-based practice. If we know what the patient experience, the cares and concerns, they become more concordant and compliant with their therapy. And, you know, it has implications in the end to save, you know, financial implications. It saves the NHS, it saves the families and the members themselves, you know, from using all the different sort of remedies, you know, because now they're becoming more enlightened and educated on something that does maybe work for them. And then finally, they did talk about, you know, the positive and the negative impacts of honey. You know, they saw honey as a folkloric medicine, Brown's Nightingale using them. So they were like, well, if she used it, you know, then we should use it. They also liked the fact that it was natural versus something that was manufactured. So they loved the element of it being a natural substance. There were negative and positive experiences. So some patients, or should I say members, some members would use honey and they had a stinging joint sensation. And they said, well, they told the clinician that they didn't want to use it anymore because it was very painful, that stinging joint sensation. While some members said, actually that stinging joint sensation was attributed to wound healing. So they continued with it and their wounds healed. And then some just had a very positive experience. They said it was soothing. You know, they felt that it was a natural product that they were putting on their wounds and their wounds healed. One of the opportunities that I had was, it was really great because I got to present a lot of my work at national and international conferences. And I also published, you know, parts of the study in the British Journal of Community Nursing. So it's really great that I got to disseminate the work as well. How was it for you? Yes, great question. I think it's really important that we do disseminate our work about the leg clubs around the world because leg clubs, even though they've been in operation for about 25 years now, the first one was established in 1995, they are still a novel type of an organization that many people don't necessarily know about. And that's something that I learned when I was telling my friends who were clinicians from outside of my immediate sort of field of work about the leg clubs who didn't know that they existed. So I definitely think it's really important to talk about the leg clubs to raise their profile. What I've done in terms of raising the LegClub profile is the first opportunity that I was really excited about came from the Wales Centre for Public Policy, which is an institution affiliated with Cardiff University that was organising an event about social innovation in countering loneliness and isolation. And I got invited as a speaker, and I was so thrilled about having an opportunity to speak to clinicians, practitioners, policy makers and community members about the leg collapse. Sadly, the event was canceled because of COVID lockdown restrictions that were implemented in March. The event was scheduled for the end of March, so it never happened. But I'm hoping that this will resume when the conditions are right. In terms of publishing my research, I also published in the British Journal of Community Nursing and the tissue viability supplements of the British Journal of Nursing. I've got the report published with permission from my funder. Ellie herself sent me a few paper copies that I gifted to my family and friends for Christmas. And obviously the report is also available online. This is also in itself what we're doing now today, just a great opportunity to disseminate findings of the research even further around the world. So that's what I'm that's something I'm really thrilled about. I am based at the business school, but I'm not a typical business scholar. I look at work through the lens of social innovation. I look at how people come together to organize in all sorts of organizations. An organization can be two people working together. that's an organisation itself. So I'm being based in business school, I'm also trying to publish in journals that are linked with my discipline. So I'm targeting journals in my own field as well with manuscripts that are in various stages of revisions. Next steps, well I would love to do more research into the leg clubs when it is safe to do so, when the leg clubs do resume working in the same way they used to work before the lockdown. What about you Abdul, do you think you see yourself doing a bit more research with the leg clubs? Um, yes, absolutely. I feel, you know, I've learned so much in terms of, of what leg clubs provide. And one of the interesting things I found is that, you know, the leg club model is something so bespoke and so niche. And I wonder if, you know, it can be replicated in other, for other chronic diseases. Could we, you know, draw upon these experiences or these, you know, elements and pillars of the leg club model and use them in other chronic conditions and see, you know, the effect that I'd love to research more into that there. Absolutely. Because I just think they're fantastic. I will stop you there just to say that in one of the leg clubs that I visited, one of the members told me precisely that, and I said, well, would you change anything about the leg club? And he said, no, only that they should have more of those, not just for legs, but for people with heart attack, after living, you know, after heart attacks, for example. He said, because my friend had had a heart attack, he should have a club like that for people who, yeah. Okay, so Anna, I think we've discussed, you know, our leg club journeys, why the leg club means so much to us and the useful research we've done and the impact it's had on leg club members or even in the wound care world. But if I had to say to you, what would be your take home message and what does the leg club mean to you to kind of conclude our chat today? I think my experience of doing research in the Black Clubs, meeting members and meeting volunteers has made me open my eyes to the great value that comes with aging. I chatted to Ellie herself a good few months ago, and this phrase came into the conversation, which is a theme for one of the upcoming conferences, I think, so I'm not going to take any credit for that. but the phrase was the following, old age is a presence for some and future for all. And I think that's something that we tend to forget about when we are too busy rushing through the daily life, work, responsibilities, childcare. Living to an older age is a luxury that I hope we can all experience. And doing that club research has diverted my attention to the great value that comes from aging and the luxury that it is and the respect, the appreciation that we need to show to older adults. What about you? So, I share your same sentiments, Anna. For me, the Le Club, I think there's a famous quote that I read, and for me, it's by Leo Buscaglia. And it reads, too often we underestimate the power of a touch, a smile, a kind word, a ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. And I think the leg club embodies those sentiments. And for me, it's exactly that. That's, you know, that's what the leg club for me is. I think it's a beautiful message on which to end and I'm sure you just as myself will be happy to have a little chat with whoever has any questions to clarify anything that needs clarifying and just to invite you to join us in our Lightclub journey.