Our research in regard to patient experiences within a Leg Club setting Part 1

Hi everyone, I'm Dr. Anna Golaska. I am a lecturer in Management, Employment and Organisation based at Cardiff Business School, that's Cardiff University in Cardiff, Wales, the United Kingdom. I do research in the context of wound healing and wound care. In fact, my doctoral research was in outpatient wound healing clinics. I was looking at clinician-patient relationships, and I met a lot of patients living with chronic hard-to-heal and non-healing wounds. One of the patients that I chatted to during my ethnographic observation introduced me to the concept of the Lindsay Leg Club. She was a treasurer at her local lab club and told me about how much she enjoyed running and organising her community space that brought people together, people who had wounds and people who were at the risk of developing wounds, brought them together for social interaction and collective medical treatment. I knew I had to check the place out, and I did. I knew that I wanted to know more, and the opportunity presented itself during my postdoctoral research, and this is when I met Ellie Lindsay. In my postdoc research, I did a service evaluation of the Lindsay Leg Clubs, looking at the generation of social value through social interaction in the Leg Club. The project concluded in August 2020 with this wonderful report about social interaction in the Lindsay Leg Club, which is available on the website of the Foundation. And I knew that my Lindsay Leg Club journey did not end with the end of this project. It continues and I'm thrilled to have an opportunity today to tell you a bit about the project. Abdul, over to you. Hi, my name is Dr. Abdul Sekom and currently I'm the Stroke Hub Wales Research and Innovation Manager at Cardiff Metropolitan University. This is a Welsh Government initiative that aims to foster and engender stroke research, innovation and education amongst our Welsh HEIs, health boards, researchers, clinicians and allied health professionals. So actually, My PhD study was entitled Evidence-Based Wound Care, Integrating Patient and Clinician Perspectives. As part of my PhD project, I was introduced to Ellie, where I then went into leg clubs and looked at the lived experience of patients using medical grade manuka honey to treat their wounds. I loved the social interactions and the setting, and I'm gonna talk a bit later about the interpretive feminological analysis that I undertook with Leg Club members. So join Anna and I to talk about our experiences of working within Leg Clubs and part of our research. So Anna, how did you come to learn about the Leg Clubs? Thanks, Abdul. I learned about the Leg Clubs when I was doing my ethnographic doctoral research. I was in outpatient wound healing clinics, observing consultations, chatting to the patients who were receiving care from wound healing nurses in the hospital. It was a very informal chat about what brought her to the clinic. And I vividly remember that patient with beautiful red nails, beautiful white hair, a beautiful patient who told me about the leg clubs. She said that where she came from in her community, there was an organization that she was a treasurer for, an organization that would bring together people with wounds or people from the community, including volunteers from the community and specialist nurses who would provide wound care, district nurses who would otherwise visit patients in their homes or practice nurses who would be visited in surgeries by their patients. Those individuals would meet in a collective place for collective treatment and a cup of tea or some cake and social interaction. Because there are many leg clubs in the locality near where I live, it was actually very easy for me to go and visit one of the leg clubs. I approached a leg club chair with a gentle question, a gentle request to visit the leg club just to see what it was all about. I attended and I knew that I needed to know more. I stayed for the duration of the entire leg club, which was about two or three hours, I think. It was in a school, if I remember correctly. It was a hallway in a school or a community club, for that matter. That I don't remember, but I know it was a community venue. It wasn't a GP surgery. It wasn't a medical place, but it was a community place where I met lots of people, some of whom I had actually met in the hospital before, who were ever so welcoming. They served me a cup of tea right away. I got lots of Welsh cakes to sample. I took part in a raffle. I bought a crochet toy. I learned that leg clubs are a charity and they need to raise enough funds to pay for the rent, to pay for the tea and the coffee and I also learned about the clinical side of the leg clubs where members were treated collectively in small groups of four and five. It was an eye-opening experience because prior to going to the leg clubs I had not known that such places existed. In my home country of Poland at the time there were no leg clubs either so this was a new initiative, this was a new type of an organisation that I knew I wanted to research more, not for my PhD, not for my PhD because the focus of the PhD itself was a little different, but I made a note in my fieldwork diary to say come back to it later. So that's how it began, a completely random encounter in the hospital outpatient clinic and a recommendation from a treasurer of one of the leg clubs that I then went to visit. How about you? How did you learn about the leg clubs? So it's a really funny story. I met Ellie in, I think it was in Rome, at one of the wound care conferences and at the time I was just starting my PhD and it was really funny because because one always looks at a triangulation of studies. And a lot of my work was to look at evidence-based wound care, but more from a quantitative element. And there was just something missing. And I think the missing piece was the leg club. And I met Ellie and then she introduced me to the leg club. I then got the opportunity to go visit a leg club. And it was the missing piece for my PhD because when I went to this leg club, I looked at how in prudent care, they always say not the whole in the patient, but the whole of the patient. And also, it's taking into consideration the cares and concerns of the patient, because only when the clinician integrates the patient's cares and concerns, do they become more compliant and concordant with their therapy. And sitting in the leg club, that just those kind of slogans and those kind of like that evidence kind of like just resonated that what was happening in these leg clubs was that social breakdown, you know, patients were being, well, we shouldn't call them patients because they're members, they were being empowered, they've been educated, you know, they were campaigning, they were together, they could see, you know, for instance, if a friend had a certain antimicrobial, they would learn about that antimicrobial, and if their wound was, say, suitable for that antimicrobial, they could ask the volunteer, the nurse, you know, could I try this here? So they were so much more engaged and empowered, and I just felt that this is all part of prudent care, and this was the missing piece to my PhD studies, I wanted to integrate these patient perspectives. As you said, it was such a lovely setting, you can't beat a good old Welsh cake, especially living in Wales. And just the members themselves were so inspiring and I knew that this had to be a part of my whole wound care journey. So yeah that's how I was introduced to the leg club. You touched on something very important, something that I actually documented in the report from my postdoc. This idea of collective learning that happens in leg clubs which perhaps wouldn't happen if people with wounds were visited in their homes by district nurses or if they went to their surgeries to have their dressings changed or even in an outpatient clinic. This idea of collective learning and people learning about different types of treatments from the individuals around them in their social network. I saw this so many times in my study, I remember sitting at a table, because that's how the leg clubs are organized around there, you walk into a room, and generally speaking, you have the room split into two parts. So on one part on one side of the room, it's called the social side, you will have tables where people who visit the leg club can sit at, have tea, have coffee as they await to be seen by the clinician, if that's what they attend the leg club for. And on the other side of the room are the nurses who treat patients in small groups of four next to each other. And I was on the social side and I was sitting at the table chatting to one of the members who had in front of him a pack of medical medicinal compression stockings and another member joined and it was his first visit. He learned about the lead clubs from his friend, he had not been to the lead clubs before. He sat at the table and he immediately started asking this other member questions about compression stockings, about where they had got them from, whether they were painful, whether they had an opening for the toe, how to put them on and there was a lot of conversation that was very educational going on between these two individuals that I wouldn't have expected to take place at a surgery as you wait to be seen by a clinician or a nurse because you never know what concerns other people have in the waiting area and in fact In fact, when you wait to be seen by your GP or your practice nurse, you are really encouraged to, you know, keep your voice down. So, you wouldn't see that in a clinic. You wouldn't see it at home either because at home, this whole wound care process happens behind closed doors as well. It's between that person and the nurse that visits them. So, the beautiful value of the Leg Club is this opportunity collective learning that comes from individuals coming together, and there is a lot of sociological literature that talks about the power of social networks to help individuals seek help and engage in positive health behaviours. So that's just one example. Another one was of a member who came to the leg clubs to get advice on an ointment that he got over the counter to help him with his wound. And he asked one nurse who then had a conversation with another nurse and they had this collective conversation about the assignment, which again might not necessarily be very easy if things are happening at patients' homes or at surgeries behind closed doors. So this idea of collective learning is a very powerful message that the lead clubs are sending, fostering, cultivating. Absolutely, I agree with you a hundred percent. And it's something, you know, I think when we talk about our studies and, you know, dive into the depth of our studies, I think we're gonna explore that more in our conversations. It's just so, I think it's, in a way it's enlightening because that social interaction is, you know, There are studies showing that when you've got that good clinician relationship, it helps with the psychoimmunotherapy, it helps with breaking down barriers. And also, when you're in a group of people where they have similar, in a similar situation, it's easy to talk to them because that experience of having that wound and living with that wound and the pain, the smell, the I can't wear my best shoes, my best shoes is it resonates with other patients, with other members' experiences. And, you know, it's so powerful that patient voice and that being able to be educated and empowered and to have that social interaction. And as I said earlier, you know, it's something that I'm gonna, we're gonna explore and I'm gonna explore when I tell you about one of the themes of my interpretive feminological analysis. And one of the things was definitely, you know, that leg club setting where patients felt empowered, where they felt engaged, where they felt that, you know, they could just be able to be autonomous, you know, it gave them that autonomy to say, I can choose what I want to choose because I'm, I'm watching what's happening around me, I'm able to voice and my cares and concerns are being listened to by these volunteers, by these clinicians. So it was really, really powerful.