%20(LinkedIn%20Post)%20(2).png)
SCI Care: What Really Matters
SCI Care: What Really Matters
Do ambulant people with spinal cord injury benefit from a specific support group?
- Helen Smith (Ms) Consultant Clinical Psychologist
- Joe Robinson, Group member and co-facilitator, freelance artist and co-author of "The Very Alternative Guide to Spinal Cord Injury"
SCI is a rare condition, not well-understood outside specialist centres. Those who walk again are seen as "lucky" and not "disabled". In fact they have invisible disabilities, which take a heavy toll. Spending time with others with similar experiences, can help with their frustration and isolation. The literature has tended to focus on physical and surgical considerations, not lived experience.
A group was created in 2010 at our SCI Centre, providing Peer Support and information (invited speakers). It has been evaluated with positive results, and not required significant resources. Members derive benfit from contributing as well as receiving. It was presented at SCI conferences, but so far has not been replicated, except for two recent versions in the voluntary sector.
Not all ambuplegic people suit a group approach, but members report feeling better-informed to manage their unique challenges, better in mood, and supported by others who understand.
If you have any questions regarding this podcast, please contact Helen Smith at helen.smith35@nhs.net
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
You can follow us on Twitter and LinkedIn
Contact us directly with any questions or comments at iscos@associationsltd.co.uk
We're here today to talk about an innovative support group for people with spinal cord injury who are able to walk. I'm Helen Smith. I'm a consultant clinical psychologist at Stanmore, the London Spinal Cord Injury Centre, North London. And I'm very happy to have with me Joe Robinson, who is a member of the group, but to be honest, he helps me run the group. So it's great to have him here. Joe, do you want to say a bit about yourself?
SPEAKER_01:Hi, yeah, my name's, as Helen says, my name's Joe Robinson. I'm a member of the Walkers Group that Helen set up cracky quite a few years ago now. In my uh private capacity, I work as an artist and also a consultant in community regeneration. But I'm here really today to perhaps give some user context to the amazing work that Helen does with the Walkers Group.
SPEAKER_00:Thank you, Joe. So what I thought we would do is just tell you a bit about how the group developed and why. I'll throw in a little bit of science, but not very much for the academic people listening. Um, and then talk more about the experience of the group and how it works. What I'm hoping is that some people listening might be interested to do something similar where they work or to uh take our ideas and modify them and generally provide more attention for people with spinal cord injury who walk, because I think they're a neglected group within the field. So I've worked at Stanmore for I think it's twenty-seven years now, and we didn't used to have many uh patients walking on the ward. We do now because referral pathways have changed. But uh some years back I noticed that the uh outpatients who were referred to me who could walk they seemed to be very stressed individuals really trying to fulfil their former roles because people around them expected them to. Now that you're walking again, you're fine, kind of attitude. When actually it was really difficult for them because of pain or because of mobility or because of stamina and all sorts of other reasons. So I thought about getting them together in a group to share experiences and perhaps to have some educational input, some speakers on topics that would be useful. So I got a group of about eight people together to run these ideas by them, and they agreed with the two aims of peer support and information. And they chose to meet quarterly. And these were people I should point this out, these are not people with all the same level of spinal injury. They're not all people with cauldroquina syndrome, for example, although quite a few of them do have that. They're people with any level of spinal cord injury incomplete or cordraquina complete, but they're basically able to walk to a degree. So they're quite a mixed group in terms of their mobility and independence. But actually for me as a psychologist, the important things that they share are the experience of invisible disability and that not being understood. And that was where I thought peer support was so important because even their family sometimes don't understand what they're dealing with, and certainly the public won't know anything about uh the hidden issues. So typical issues that these people deal with would be continence, bladder and bowel, would be pain and fatigue, issues with sexual function, walking and falls, or fear of falls. And others like the frustrating experience of dealing with the NHS or dealing with wheelchair services or dealing with PIP and benefit systems. So actually they share a lot of common experience even if their neurological level is very different. These are adults we're talking about, but I'm hoping that similar ideas might apply to children and young people with spinal cord injury. So uh the group started back in 2010 and we used to meet in a room on the spinal cord injury centre, but the group grew. The members the attendance grew from about ten to about fifteen, and we needed a bigger room. So we're lucky that we have Aspire, the spinal injury charity, here on site, and they have allowed us to use their rooms a few times a year for some years now. So that was very helpful. So the people the people that I include in the group would be, as I say, people that can walk even sometimes, or some of them walk very well. Um they're able to speak English well enough to participate in the group without interpreters. They're stable in terms of any psychiatric disorder, they're they're able to attend and to cope with being in a room full of uh relative strangers. And they're over eighteen because I only work with the adults here, but as I say, it could include younger people in other settings. So those were the criteria. And then we've had a range of speakers over the years. We've had members of the team here at the centre, so we've had doctors talking about pain management or bowel issues. We've had um Aspire talking about benefits, we've had people talking about sport and exercise. Sometimes we have members of the group talking, and I'll I'll let Joe say more about that. Just in case I forget, I did have a look at the literature for anything relevant at the beginning, and again at intervals since, and there really isn't much on this on the lived experience of people who walk. Most of the articles about walkers or ambulant or ambiplegic people tends to be about uh the mechanics of walking, walking aids and so on, from a physio perspective. Or it's about surgery, not much about lived experience. There's one really good paper, but it was twenty eighteen now, that was Hall and Jones, talking about lived experience of cordialquina syndrome, which is a subset of what we're talking about. And recently there have been some studies in Australia that look promising. So, enough of me. I'm gonna ask Joe now to say a bit about his experience of the group and what happens in the meetings and the value of the meetings.
SPEAKER_01:Yeah, um well I guess that it's it's sometimes it's difficult because there are so many things it actually offers. I think one of the uh as as Helen as you started at the the beginning, I think it's hard to recognise how severe an emotional impact it is, the kind of once you've gotten over whatever injury or accident or whatever got you to having a spinal injury where you can still ambulate to some degree, um, is that as well as all the medical stuff and recovery and emotional part of that, you're then kind of left in in this weird sort of hinterland between, well, I I'm not a permanent wheelchair user and I'm not able to walk around to a point where no one would actually recognize I was, you know, not injured. And the the it sounds really simplistic, but the thing is it leaves you in a kind of state. I can, I mean, luckily I've got an overdose of this now, but I remember in the early stages, I remember talking to my consultant. I mean, this was after a year or two, and I said, I wasn't really sure if I was actually properly disabled or not, because I didn't see myself in a wheelchair, which is what the main in certainly, I mean, this was about kind of 15, 20 years ago now, that that was how spinal cord injury was seen. You're in a wheelchair, that's it. And I was walking around, okay, a bit like a penguin, uh, you know, and and rather unstable with crutches and things. But people would come up to you and think, well, you just twisted your ankle, and then you think, Well, do I explain myself to them? And then my, you know, and you get to a point where life's too short for this. So all that's going on, and then when I was seeing my consultant, he said, Oh, well, is this um perhaps and I was talking about the difficulties I was experiencing, and he was kind of saying, Oh, well, there's this walkers group. And I have to be honest, and I think other people have thought this, Helen, is at the start, I think he was actually suggesting that I was going to a group that was going to start help, you know, fell walking to my legs. I don't want to go on a walking trip. So I thought, well, but he's recommending it, so there must be anyway. So then I rock up to a meeting. And and literally the first, you know, I mean, the meetings are sort of um usually half an hour of something interesting like a presentation, um, and then uh, you know, half an hour to an hour of talking and chatting. And it was just the the sense of relief of finding other people that you didn't need to explain yourself to. Because whether it's my partner, my family, friends, people I'm bumping to on the street, or people I've never met before on a bus, you have to sit there and make a conscious decision of do I explain all the difficulties I'm coping with right now, today, or do I just give some rubbish excuse, you know, just sort of brush it off and move forward. So to come into a room where there was everyone and and as you say, Helen, lots of different levels of of injury and different uh levels of mobility and things, but the the all of us having a shared factor of we didn't need to explain ourselves. And I mean, Helen, you know me, I'm I'm emotionally I'm quite a robust person. I don't get flapped about most about most things. But even I struggle and it builds up over time. So simply having every three or four months a meeting to come to for an hour, two hours, it it just releases that emotional kettle, that you know, the the the boiling kettle and stuff. And it and this is the same for other members of the group, they all say the same thing. It's just like everyday life just grinds you down in terms of spinal injury and you know, walking spinal injury. And it's just that moment we can share with other people. And I know it sounds silly, but I actually look forward to the meeting like I'm going somewhere, like a friends group. And I and and we are, I mean, just to be clear about the group, it's like people do make friendships, but the group itself, the only friendship really is when you meet the others in the group. Lots of people don't see each other, so they just come to meetings, chat, share intimate things, and then they leave and they never see them again until the next meeting. So you build up but so so that's the kind of I mean, and the experience of the group in terms of the I mean, I think Helen's got a really nice balance. There's something to start off that's an interesting topic. Well, sometimes it's interesting and sometimes don't remind me. No, as we experience once in a while we get one which is uh surprisingly depressing. But instead of feeling sad, everyone at the end of the group, just as once the speaker's left, we all go, we'll we all kind of a few expletives and go, well, that's depressing, isn't it? And then we'll have a laugh about it. But the majority of times we get really interesting things we talked about holidays and you know, as you say, benefits, um how to poo, how not to poo, you know, it's kind of like and all those things. So it's it's it it's yeah, I mean I mean the the thing is, I think if you say, well, let's just set up um a peer group, a peer support group to talk and things, I think people think, oh well, it's really nice, you know, it's a supportive thing to do, it's nice. But I have to be honest, and again, other people have have discussed this privately within the group, is that it's to be honest, the walkers group that Helen runs is a bit of a lifeline. I mean, I know I'm sure he won't mind me saying, but there's there's the you know, there's one person who I do call a friend from the group, and he he talks openly within the group about how it saved his life. He was thinking about suicide. Then he came to the group, and within five minutes he was he was feeling all the pressure going and that he wasn't alone. Um, and I'm sure that's been the same for others as well.
SPEAKER_00:He he had that lovely expression, didn't he? About I felt as if I was the last unicorn.
SPEAKER_01:Yeah, and that's exactly I have the same thing. It's that that basically as a walker, you um I mean, uh sorry, going slightly off topic and I'll only very briefly is I mean, the the issue about being a walker and not being identified in any meaningful way was, I mean, as Helen knows, what one of the things I raised was actually we need a better name. So we put forward the notion of actually calling walkers amphiplegic. Because you know, you wouldn't go around saying people in wheelchairs are sitters. So so while walkers is an absolutely, completely fine um offhand phrase, it's it's there's no problem with it in that sense. It doesn't offer you any um it doesn't offer you a sense of uh seriousness. And certainly when I've been to some uh hospitals and GP surgeries, the the issue I've discovered is that I know more about my injury than the person who's supposed to be helping me. And the first problem I had was how do I describe all these complex injuries and but but I'm still walking, and they look at me. So in the end, I came up with a phrase called ambiplegic, and other people have started to pick that up as well because there's certain situations where you kind of go, Well, you don't want to talk to your consultants, say I'm a walker, and they think, well, that means you go up hills every weekend. Yeah. It's it's uh Yeah, yeah.
SPEAKER_00:I think didn't you get it published in the BMJ opinion section?
SPEAKER_01:Yes, uh I I mean the letters or something, yeah. I I just sort of sent them off a thing saying, Look, I think this is an issue, would be and they said, Oh, we'd be very much like to hear about it. And people have it's very ad-hoc, but some you if you Google the word, there's a very slow stream of people starting to pick it up. And I think it's I mean, I remember when I I first had my injury and I then uh because I was struggling, and then there was advice to come to the walkers group. I mean, as far as I remember, even then, is walkers wasn't really a phrase then.
SPEAKER_00:Yeah. It's shorthand amongst physios, isn't it? For you know, we've got this many walking on the ward at the moment kind of thing. It's not helpful in the community or for the individual.
SPEAKER_01:I mean, that's changed over the last uh 12, 13 years. I mean, now walkers are a recognized group, and there's articles in magazines and this, you know, uh backup do lots of sessions and things like that. So it's it's now a recognised group. But I remember when I I had it, it it was a it was a vague, you know, a vague comment. There was nothing, and I think I mean certainly your walkers group was well ahead of the game in terms of actually recognising the group needed more than simply, well, here's the leaflet for the wheelchair users, you'll probably get something out of that.
SPEAKER_00:You know, it's it's uh the thing is it's such a simple idea. That's why I'm surprised there aren't more of them. And it isn't expensive to run either from an NHS management point of view. One psychologist, a room. Oh, the lunch is provided by the um catheter companies, isn't it? In terms for them to have just a table with their leaflets and products.
SPEAKER_01:So 'cause as I remember they were they were hoping to sort of you know sell their wares or whatever and advertise it. So I think I think either you or someone in the group said, Well, look, you know, we don't mind them coming to every meeting if they want, but perhaps they could, you know, pay for it by bringing some sandwiches and things. So that and again, that a little bit of food, I think, with to be honest, any group meeting, yeah. Uh a little bit of food just just makes things more social, which is good.
SPEAKER_00:Yeah.
SPEAKER_01:I mean, I'll be honest, and I've said this to you before, Helen. I think you kind of under undersell your role because I think it's it's simple in terms of a room invites, you know, someone someone to talk a little bit and then have a general thing. But I think you're you have a really good balance between being facilitative but actually letting the group go in it just letting it kind of ramble in its own natural way. And it never goes off the rails. It's not like people won't listen to anything. But you just do it in a very kind of, you know, there's this speaker, we'll do that, and that's a little bit formal, and then we'll just break and have a chat. And it's a really nice combination.
SPEAKER_00:Yeah, thank you. I mean, it's actually easy for me because I'm interested. I'm interested in what the group have to say, and I think we've got an amazing bunch of the regulars who come are actually really impressive individuals, aren't they? So it's quite easy for me to sit back and listen.
SPEAKER_01:Yeah, but it but it is a skill because I've I've worked I've worked with some other I've seen other peer groups where the facilitator feels almost obliged to well facilitate, you know, to keep the edges neat and tidy. Um, and in a sense, what you do is well, the room keeps people neat and tidy, and and the agenda is well, we'll listen to a speaker for 20 minutes, half an hour, and then you can say what which people just chat and that munch on a sandwich and things. So it's just nice, but sometimes you get facilitators who are very kind of well-intentioned but just overly caring, and and you just trust the people to and you've worked with groups yourself, haven't you?
SPEAKER_00:You know, about what works and what doesn't work.
SPEAKER_01:Yeah, no, I've yeah, in my in my other work, I I work with lots of community organizations and community groups and stuff, and it is it is a real skill on how to facilitate people, but let them be in control. Um it's a level of trust, I think, that you have to give to the group.
SPEAKER_00:Yeah.
SPEAKER_01:I mean, it presumably that might change. I mean, I know the group has, like any group over the years, we've had one or two characters and what one person who I won't name uh in particular became and and and his behavior was so kind of slightly outrageous that he actually became almost a kind of um uh a very kindly joke. Everyone else kind of loved him because he was such a grumpy person. Yeah, tankerous, that's the word, yeah. So even with people who were slightly off uh off group agenda, there's the then the nature of the group was people tended to want to kind of go, well, we'll listen to that person for about 30 seconds and then we'll gently move them on because we don't want to get bored.
SPEAKER_00:So early on I thought I should take feedback from the group, and we had the conventional piece of paper with the visual analog scales, which was all the rage back then, a very wasteful of trees, and the group got pretty tired of doing them after a while. But in the early meetings, I was interested in whether people felt the content had been useful, whether it had been enjoyable. I can't remember what the other questions were, but they were nearly always rated kind of nine, ten out of ten, and we were getting through all these papers and people were getting tired of doing them. So um instead of that, I had a medical student, Lara Shemtob, uh came and did a little uh study, an evaluation study. It was just fortuitous, really. I think I had an email saying there are medical students looking for projects, and I put a little outline of the group and said, Would someone be happy to come and evaluate the project? Because if I ask the group questions, they're likely to be very polite, and having an outsider come and do it would be good. She came and we did a little pilot study. We drew up some measures which actually we ditched in the end because they didn't really suit this community. Um you know, measures of depression and anxiety will confound uh disability and uh unemployment and being in hospital and so on with uh symptoms of depression. So we got rid of those. She had some uh analogue scales that she designed herself to suit the group. She did the pilot with three people from the group, and then she interviewed I think it was six in the end. We wanted eight, but I think it was only possible to get six on the days that she was in. And she did a bit of analysis and it the measures were broadly positive. And so we decided to continue with the group in the format that it is. We used her analysis and my colleague Carol helped to put together a presentation for a spinal injury conference. So I've actually presented the work at two conferences. Uh it was a keynote speaker back in Gutman's in 2016. Which was funny because the very morning that I was presenting, we had the result of the Brexit vote came out. And so I was presenting to a large room full of people, some of whom had their heads down looking at their laptops very memorable. But however, that was a joint presentation actually with Jacques from Backup, because I'd linked with the backup charity to say, look, uh these people have needs. Your um posters and leaflets only seem to feature wheelchair users. Do you have people who can walk in your uh membership database? And they said, actually, we've just done a survey, we have a large number of walkers, and they've made similar comments that they don't feel represented. And some have said, Oh, backups obviously not for me because I'm not a wheelchair user, and they didn't want that to be the case. So Jack put together a nice presentation. I talked about the group, Jacques talked about what backup can offer, and we uh at my group's insistence we said to the room, think about your patients or service users who can walk, think about what you're offering to them and you know, start offering more and make them more visible. So uh that was some years ago, and then twenty nineteen I presented the findings of this small study with Carol in uh Belfast, the Goodman Conference. And again, we were hoping that some people would come and say, Oh, tell me more, I might do something similar. But so far they haven't. There was one Esper conference, which is the European Spinal Psychologist Association. There was a speaker from Switzerland who talked about the invisible disability issues and how people with spinal injury who walk are often misunderstood and feel quite conflicting emotions, all the same things that I thought actually, but she set them out really well. But she wasn't running a group, and when I spoke to her, she wasn't actually a clinician, she was an academic and she was leaving her post. So unfortunately that didn't go anywhere. So to my knowledge, nobody's doing anything like this, and I do think it's a a really enjoyable activity for me as well as uh what Joe has been saying. But it is um quite easy to run, there's a bit of admin involved, um and you need a large enough room. But also it's been a productive group in many ways. Uh Joe uh produced a book out of meeting a researcher from Loughborough. I'll let you explain about that. But also we've had um we had a speaker from the House of Lords who uh came kindly came to talk to us, um Baroness Sal Brinton. She talked about uh disability issues in Parliament and how we all need to use our vote because there isn't enough representation and there are so many issues that impact on people with disability. But she also got something from meeting the group and hearing what they had to say. Uh one of the group has had a baby, so another kind of productivity, but that was since her spinal cord injury.
SPEAKER_01:Well, I was just thinking because that that last point about um the the member who had because the I can that's the other thing, which again it it's that natural life filters through the group. So as you meet people, you know, every three or four months and stuff, and members of the group change, but others stay, is that you see people's lives and you see them growing and doing things, which then make you so, for example, uh there's someone was talking about the excitement of having gone on a major European holiday, and that made me kind of think, well, Cracky, if they can do it, then then what's what's stopping me? But the the baby, I mean, not completely owned by the group, but it's almost everyone in the group was kind of keeping their fingers crossed and waiting to hear the news about it. And I can think of another member that um was talking about how they met their life partner and got married. Um basically they wouldn't have done that if they hadn't been a member of the group and and uh and stuff. It was that needed that game. So there's all that little stuff which filters through, and then that kind of that's part of the I mean that's um that's icing on the cake. I mean, Helen, you make the cake, and then the icing on it is you get all that stuff filtering through, which is naturally therapeutic. I mean, it's it's far more, far more solid than here's a leaflet kind of going, you can still have children when you meet someone, a peer group where someone's actually having a child or someone's built a new relationship even though they're severely disabled, yeah, or gone on holiday. So you get all those real life experiences which then bolster your own kind of sense of, well, maybe I could do that.
SPEAKER_00:Yeah, yeah. I'm hoping the next one will be about one of the members has been really thinking about her life. She's about my age, so she's at the age where you have to start thinking, what can I do with my my remaining good years before I get too old to do kind of major things? And she's been uh really building up her positive um uh activities, you know, booking things and doing things while she has her health and she knows that her walking has deteriorated, but she wants to get the best out of what she can. So I'm hoping to get her to talk a bit about that, about building a good quality of life that with aging issues or just with the mobility issues that come with spinal cord injury. And we did a group recently, you and I, didn't we, where Joe was the main speaker and presenter, because we were talking about a very common issue which is dealing with Coping with idiots. Dealing with idiots, coping with idiots, yeah. So when you have people in public, as you said, assuming that you've just broken your ankle or asking you quite personal questions very inappropriately, it's not easy, is it, when you're feeling slightly emotional about the subject to give a polite, calm and concise answer. So it's good to think about preparing an answer and perhaps role-play the answer. And Joe made some puppets.
SPEAKER_01:We did it, we did a very cheap version of something that's technically called forum theatre, where you you you get real-life examples, then you role-play them. But I we did it with slightly amusing puppets to make it a bit less threatening and things. No, and and it is a real issue because it's it's it's and and one of the things funny enough, one of the things we covered was what do you do when you sit down with a medical professional where you know more than they do. It's it's uh it leaves people floundering normally. So just practicing that helps helps people sort of do things and stuff. Yeah.
SPEAKER_00:And we talked a bit about the research from Bristol, the University of West of England. They did a unit study where they talked about these issues, not particularly for spinal injury, but they produced some useful materials about dealing with staring, dealing with inappropriate questions, and dealing with the feelings that that evokes. So there is some relevant literature, but it's from different uh client groups, if you like. The other thing I was gonna say about links was about the spinal injury charities. I've mentioned Aspire backup. There's also Spinal Injuries Association and Wheelpower and uh called Requina charities. So I found that helpful early on to use them as speakers and as co-facilitators at times. There was a person who was writing a column, Andy Healy, he he wrote a walker's column for the SIA Forward magazine, but with a lot of humour about difficult topics like incontinence or pain. But ma managing to make the articles very uh accessible and enjoyable to read. So he was helpful to come along and be part of the discussion. And yeah, Backup have uh really responded well and have created a a Zoom lounge for walkers to meet. I think it's once a month on a Wednesday evening. Um and they've also got pictures now in their leaflets and on their website. There are quite a lot of pictures of people with perhaps a walking aid, um, as well as people using a wheelchair.
SPEAKER_01:And and as you mentioned uh uh a moment ago, um one of the guests was a uh a lecturer from Loughborough University that wanted to talk about um actually I think they they came to talk about uh it well it was sports because Loughborough is very uh emphasis on a disability in sports, isn't it? So they were talking about things like that. But they also just chatted about a few other things and and a bit of synergy was I've been thinking about trying to do, I mean, with my creative side, I've been thinking about trying to do um a book to help people cope with all these different things. And he'd been thinking about a similar thing. So that actually is a project that ended up doing um what's what's been a very um successful little book. Everyone that that gets it finds it extremely useful. It's uh the the very alternative guide to spinal cord injury, if you're interested in finding it.
SPEAKER_00:Um by Papa Thomas and Robinson?
SPEAKER_01:It is, or the Robinson Papa Thomas I was let's say.
SPEAKER_00:Of course, of course. It's nice, it's a mix of pictures and facts, isn't it, and humour.
SPEAKER_01:Yeah, and and and it is, I mean, and in a sense, it's a bit like the Walker's group, it's it's trying it's it's deliberately trying to find a slightly lateral way to talk about quite difficult issues. And so I mean it was I mean, as you know, Helen, part of the fascinating feedback we got was even consultants were saying that some patients were looking at a page and then using that to talk about issues which they were too embarrassed to talk to the consultant about, which is so it is a whole issue, and in a sense, that that's that was another spin-off benefit of um attending the Walker's group.
SPEAKER_00:And there was a relative mentor from Backup, wasn't there, that said a similar thing. He said, I could have used this this funny page to talk to my brother about the really awkward subjects when he had his spinal cord injury.
SPEAKER_01:Yeah, and work situations as well. Someone I know used it to explain to their boss why what appeared to be inconsequential was something really quite serious. So it's yeah, so it's a useful thing. You just mentioned, I'm I'm conscious of time, but you just mentioned something there, Helen, um, about backup, which has been doing a kind of and they're not alone. Um since COVID, there's a whole raft now of digital um sort of cafes, zoom, zoom things, and support groups online and things. And I think um, in terms of accessibility and also ease of just rocking up, you know, click onto your computer and you can join a group, I think they're brilliant. But I have to say, I think for anyone that's thinking, oh, well, setting up a peer support group that could be done online is that the difference in terms of quality is absolute chalk and cheese. The whole dynamic of a digital meeting. Well, I think this applies to most people at work and have digital meetings know that the quality of the conversation and the interactions is never as deeply it doesn't recognize people's feelings. You can't read facial gestures and body language. And it's just it's it's you know it's it's less than 50% of the quality you actually get out of a real meeting. Obviously, a real meeting, it's physically people have to come to it. But I guess just to say, I think um a digital support group is is a perfectly good thing to do, but it it does not have the depth of I mean I don't look forward to going to digital ones at all. If I do go to them, they're usually kind of like, well, I hope there's no one that's gonna just start waffling on about their own.
SPEAKER_00:Oh yes, yeah.
SPEAKER_01:Which happens a lot. I mean, it's it's interesting. I mean, there's a real I mean I guess it's reflective of the group. There's a really nice thing about that if someone is new to a group and they kind of say, Oh, I've I've only had this injury for you know three or four months, six months, and I'm sort of experiencing this, then all the the experience in the group can literally be given is well look, have you done this? Have you tried that and all that's doing which is brilliant? The challenge for that is that well, or rather, in a physical meeting, it's easy because one person can chat with the other and everyone else then gets gets and has their own conversations. On a Zoom, if that happens, you've got 20 or 30 people sat there on screen while two people have a chat. Yeah, and it's totally I mean, I don't go to as many of those anymore because emotionally they just don't offer me anything, they're just kind of like Yeah, when you're further down the line, you don't need to keep hearing new stories all the time, do you?
SPEAKER_00:They're quite sad stories, yeah.
SPEAKER_01:And again, well no, I guess I can say this as a spinal edge person is like I don't I mean, and it doesn't happen in the walkers group is I don't want to go to a group to hear people moan about themselves. I've got my own life to moan about, and that's it. That's all I need. I don't need to hear 20 other people's stories about how they're suffering.
SPEAKER_00:Yeah.
SPEAKER_01:What the group is about is that that's all left outside, and what we're actually getting on with how we recognize each other and what the positives are.
SPEAKER_00:Yeah, and what's important for me to know about or think about now in my next stage, like foreign travel or benefits or work, yeah.
SPEAKER_01:Or or just that I'm okay. Yeah, you know, I feel like and actually come to this group, and actually, no, I'm I'm not mad, I'm not going in crazy. I'm I'm reacting to the world in a completely rational way, and here are lots of other people having exactly the same experience.
SPEAKER_00:Yeah, I think that's really well put. Yeah.
SPEAKER_01:And that's the level of moaning, I suppose. We we often I guess the group moans about the outside world. Yes. We don't moan about ourselves as individuals. Like, oh because if you say, Oh, I've had this last week, and the other person goes, Well, yeah, me too.
SPEAKER_00:Yeah.
SPEAKER_01:And that, you know, it's it's uh anyway.
SPEAKER_00:It's a good point, actually, for anyone thinking of setting it up is not to do that um going around the room letting everyone tell their story. We did that once, third or fourth meeting, where I said, Can you just quickly introduce yourself, just say a couple of things about what your level of injury is and something like that. And what happened was the first person did as they were told and said a couple of sentences, the second it got a bit longer, and as we went round the room, people were telling the whole story with the name of the surgeon and how many months, what date they had the surgery, and it was getting ridiculous. And it took the whole time just to get round the room, and I learned from that. I thought, right, we won't do that every time. We'll have a quick introduction to a new face, we'll have people wave if they're called requirer or something, so the new person knows who to make a beeline for in the lunch break, and then we'll get on with the topic. We won't go into individual stories. Yeah. And if they come up naturally, that's fine, but it just it's not manageable otherwise.
SPEAKER_01:No, and I think it's important because it and it and it does because then in the conversations you people pair up, say, Oh, I've got that injury as well, and then you start chatting. But no, and again, that's a really important point, is that you often go to other meetings around spinal injury, and the first thing is, oh, can we all just go around and say what are you know, are you T3, you know, F6? It's it is it's it's you know, it's like I'm I we introduce ourselves by saying, Well, what number are you? Which and I I totally get it. It's about saying, How do you identify a spinal injury? But that's but you're in a group of people, yeah. So and particularly if it's a peer support group of spine energy people, we're all in there for the same reason. It doesn't matter whether you're top, bottom, left, or right, you're you're all buggered. So why why waste 30 minutes introducing your numbers when when that that deprioritizes the human side of people? So yeah, yeah.
SPEAKER_00:Oh, and the last thing I didn't say is about the topics, I try to take suggestions from the group, and if there's a topic that gets several ticks, I go with that. But sometimes there is no standout, or I just think I'd be interested to hear from somebody, or there's something on the media that sounds relevant to me. So some of the choice of topic is down to me, some of it is uh more democratic.
SPEAKER_01:Yeah, yeah. And you and occasionally repeat them like I mean, the benefits conversation I think we've had um once once every couple of years or something, you know, because it's it changes, yeah. Yeah, so you can repeat. I mean, if you if you have a programme of things, I think as long as you leave something about 24 months, I don't mind listening to it again because usually things have changed a bit. So it's it's Yeah.
SPEAKER_00:Yeah.
SPEAKER_01:And I guess sorry, forgive me, Helen, but the other thing I'd say is if if there's anyone out there professionally looking at doing this is uh within the limits of your time, they should just get in touch with you.
SPEAKER_00:Uh yes, I think that would be good actually. They could email me, um, we could have a brief discussion. I mean, if there was a lot of interest, we could have a online meeting, your favourite thing. But yeah, that would be good. It's it's rewarding and it's worth doing, and I think they're very deserving. And that's the problem, isn't it? Often they're seen as you don't deserve a bed in a specialist unit, you can walk, or at least they feel that way, even though none of the staff would say that. So that's partly why I wanted to do the podcast was to get people thinking about these people do deserve attention and they deserve tailored interventions, not one size fits all.
SPEAKER_01:I mean it'd be interesting if someone else was willing to set one up, because uh y you could also then measure the I mean it's got to be financially beneficial in terms of that you know, the the the the the emotional release that the groups give, you know, by meeting for two hours every three or four months is stops someone building up where at the end of the year they I mean, God forbid end up topping themselves because they didn't have that release. It's yeah.
SPEAKER_00:And also if they can use the information perhaps to manage their condition better, not need an admission, not need as many infection um antibiotics, it all helps, doesn't it?
SPEAKER_01:Yeah, absolutely, absolutely. Well, I guess we're we're we're we might be coming to the end of our of our time, so I do hope the conversation has been interesting to to some people out there. And I guess just to say no one can really know where these things go. I mean, I think I would feel I would genuinely feel distressed if if I suddenly discovered that the group wasn't going to carry on anymore. So I I do hope that certainly within Stanmore and your work, even if you I mean you're years off retirement, but uh even even if you uh get to that stage that there's some way to actually carry it on in a meaningful sense rather than that it drops. And I I hope that if anyone else picks up the idea, they you know do something that can be embedded. I mean that's the other thing, just to say, is that your work is embedded in in the in the services that are offered, and I think that's crucial. It shouldn't just be an add-on. It it's a vital, tiny, small little thing that's vital to those people that use it. So long long may it carry on.
SPEAKER_00:Um Thank you. Yeah, I will think about that with our junior staff in the future that we get them involved in the group and get them to keep the tradition going. We did think at one point, didn't we, about splitting into a kind of more social group for the longer standing members and a more rolling educational group for new members, but actually the group uh chose not to do that. They they feel that uh it's important to have uh older, as in longer standing members present to welcome the new ones and to um keep the the group as it is. Um and that the educational topics are actually relevant to everyone. So it's fine to repeat them, but yeah. Okay, so we've come to the end of our time. I would like to thank Joe for his important contributions both to the group and to the podcast. Thank you to ISCOS for hosting it. Thank you also to our listeners, and for people who are interested, there will be links to what we've talked about in the show notes. Thank you.