39. Art Of the Possible - Fab NHS Stuff

This week, I was delighted to be invited to kick off the ‘Art of the Possible’ festival, hosted by Fab NHS Stuff.

It’s been a lively programme focused on making good stuff happen - five days packed full of short webinars and other goodies, offering practical tips and resources to help people turn their quality improvement pledges into reality. I always enjoy getting involved in simple stuff that makes things happen, and NHS Fab Stuff is up there with the best!

 I was chatting with Terri Porritt and Rachel Jury about meaningful coproduction, and we were answering questions from our live audience. A wonderful mix of professional experience and lived experience. 

I thought I could give the ‘Art of the Possible’ festival a boost by sharing the audio from our conversation as this week’s podcast. 

Please leave feedback or a review telling us what you think.

Videos of all the sessions are available free of charge on catch up – a whole box set of little videos with passionate people contributing their nuggets of brilliance ranging from trauma-informed support for your colleagues to reconditioning games.

Lemon lightbulbs 🍋💡🍋:
(I have yet to squeeze them - to be updated!)

 Links and resources: 

Art Of The Possible

All the videos and top tips can be found here

 Video of our 'meaningful coproduction' session

Gill’s Digital Postcard:  Top Tips for meaningful co-production

 Our Whose Shoes Fab Collection: https://fabnhsstuff.net/fab-collections/matexp

 Both Terri Porrett and Rachel Jury have been previous podcast guests.

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If you enjoy my podcast and find these conversations useful
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I tweet as @WhoseShoes and @WildCardWS and am on Instagram as @WildCardWS.

Please recommend 'Wild Card - Whose Shoes' to others who enjoy hearing passionate people talk about their experiences of improving health care.

Transcript

SPEAKERS

Gill Phillips, Terri Porrett, Rachel Jury, Jennie Negus

 Have you been following the ‘Art of the Possible’ festival by 
 Fab NHS Stuff? It’s been a lively programme focused on making good stuff happen - five days packed full of short webinars and other goodies, offering practical tips and resources to help people turn their quality improvement pledges into reality.

 Well as you know I’m really keen on simple stuff that makes things happen, so I was chuffed to be invited to kick off the event, chatting with Terri Porritt and Rachel Jury about meaningful coproduction. Regular listeners will know both Terri and Rachel, as they have been previous guests on this podcast series, A wonderful mix of professional experience and lived experience – check out Episides 12 and 17 to see what I mean.

 Now, the bad news is that by the time you listen to this, you will have missed the whole thing. The good news is that it is all available on catch up – a whole box set of little videos with passionate people contributing their nuggets of brilliance ranging from trauma-informed support for your colleagues to reconditioning games.

I’m really keen to check that one out!

Anyway, I thought I could give the series a boost by sharing the audio from my conversation with Terri and Rachel as this week’s podcast. If you would like to watch the video, I will post a link to it, and indeed to all the other sessions, in the programme notes.

 So, here we go …over to you, Terri Porrett …

Terri Porrett  02:32

So, good morning, everybody. And welcome to the first session in our Art of the Possible festival. And it gives me real pleasure to introduce two people that actually have influenced me and my practice hugely. The first is Gill, of 'Whose Shoes' fame. And the second is Rachel, who is an expert by experience. And in my day job as a stoma care nurse, has taught me so much.

Terri Porrett  03:02

So we obviously are recording this session for people to watch on, catch up. But but I'm just going to really start the conversation by by saying, Welcome, Rachel, welcome, Gill. Co-production, meaningful co-production is at the absolute foundation of all service and quality improvement. So maybe let's start with both of you. First of all, Gill, how did all this start?

Gill Phillips  03:36

How did it start? Well, that's a big question. So I worked forever, really, in local government; I was in social care. And I became really passionate about what was then called the personalisation agenda. And how amazing to get services to fit around people, rather than the other way around. But actually, how did that work? And the more I came to learn about it, the more I thought there's more to this. And basically, we don't yet know what personalisation is. That was back in 2008. And, take some simple examples. So, if we're saying to people, we want you to have choice, but actually, we're in a completely risk averse society, what does that mean? So it wasn't that simple. And similarly, I was really, very keen on the idea of prevention, rather than waiting till people have got problems, and then trying to sort them in crisis, which was happening a lot in social care. But how did that work, when the eligibility criteria to get any help at all was going through the roof? And that was basically in a nutshell, how, Whose Shoes was born, to start to tease that out and see what it meant from different perspectives? And how by actually all coming together and realising that probably all of those perspectives are valid, but how do we take it forward? And how do we work together? So to me sometimes, the buzzwords, whether you call it co-production, whether you call it #SolvingTogether, or whatever the  key thing is, or personalization, it's trying to get through that to the people and find out what actually matters to people, and to try and join things up rather than have, you know, separate parts of your life. To me, people just want to get on with their lives. And if they've happened to have problems, if you like, with social care sort  issues or NHS issues, then the more those things can  join up and just let them get on with their lives, then I think that's what all of us want. So that was really where Whose Shoes came from.

 Terri Porrett  05:46

And Rachel, tell us a little bit about how how you have focused your work and energy really, first of all in sharing best practice but also in sharing your expertise, your lived experience.

Rachel Jury  06:02

Hi everybody. My name is Rachel and I was a trained therapy radiographer before I got ill. So my bladder and bowel failed, and I wasn't able to work any more. And to cut a long story short, I, I lost myself I found myself and I found advocating, and I found helping improve services and sharing my story and experience where I met Terri, because I've got two stomas, a colostomy and an ileostomy, I met Terri and then I became part of FAB and a social media manager. And for me, it's just amazing seeing all sharing best practice in the NHS and where I've learned, and I've learned a lot from Gill, so it's a great privilege to be honest on this call to be able to say how much, what she has done has improved my advocacy and my communication with healthcare professionals and able to share and help improve services and make true true meaningful coproduction.

Terri Porrett  06:58

So okay, so the whole point of this session was we were going to learn from both of you about your top tips to meaningful co-production rather than, "Oh, I've got to tick that box on a form to show I'm doing my QI right". So Gill, do you want to kick us off? It doesn't have to be in order of priority, but what's the top tip from you? So me, I'm new in QI. What  would you say to me - Terri, this is really, really important.

 Gill Phillips  07:32

But I think actually thinking about it, a great way to start would be to listen to the podcast that I recorded with Rachel. And I have used that really, really powerfully. And people say, you know, NHS England say, "we want to listen to stories, from people with lived experience". And I say, "Listen to this one, listen to this one". And, you know, the privilege of speaking to Rachel finding out more about your story, Rachel, and I know, I got asked to do a session around "Walking in your shoes", and I was asked, "Is it possible to walk in someone's shoes?" And I thought, you know, rather than me talking in theory, let's hear in practice a little snippet from Rachel's podcast, talking about being believed, being trusted. And, you know, I think for me, any way of bringing in people with experience and that's, you know, lived experience, learned experience, but basically ... learning from the people who are actually there. And, you know, for me, it's been more of being a catalyst, and obviously, bringing my own experience as well. But if you bring people together... So okay, top tip, if you bring people together as human beings, and you're genuinely interested in what they've got to say, and what their experiences are, and you're listening, then you won't go far wrong. And, you know, people, I think, for me, over-complicate things. I think the Whose Shoes approach, the board game, that kind of wider approach is really simple. And it's  just coming up with real experiences, and seeing how whatever changes need to be made, work for that. So I've put that a bit clumsily, but to, if you actually bring people together ... so you've got to make it realistic. And if you want to make a change, it's no good, you know, just talking to the people using services, and coming up with things that cost so much money that you haven't got, and nobody actually wants to go and work in that profession. Because ... you want the staff to be fired up to, as students, want to go into that particular area, as staff to stay in that particular area, to go into work excited each day, and to be able to make changes or to be able to be empowered to DO stuff really. So I think you've got to trust people. And that's the patients, in terms of if if someone says to you, this is the problem, then almost certainly it is. And similarly for the staff, for them to be able to, as I say, have a job that they enjoy, and that they feel empowered to make a difference. And I think my starting point is that, you know, obviously you get terrible tragedies in cases and so on, the bad apple, but mainly for me, people go into any job because it's something that interests them, that hopefully they're passionate about. And they want to do a good job and make a difference. So it's trying to do everything to keep that spark alive. Really.

 Terri Porrett  10:42

I mean, that's, that's so powerful, isn't it? Because it is about trusting people with lived experience, trusting your staff. I often found as a ward Sister, if I was having an issue with a particular service or way that something happened on the ward, I didn't have to come up with the answer. I immediately spoke to the staff. "This is a pain. We're redoing X, Y and Zed 4 times. How can we ...?" "Oh, right, Terri, what we need to do is this, this and that". "Perfect. Do it. Let's change it". So if you're open as you say and trust people, and then act on what they tell you, as far as I'm concerned, well, certainly as a ward sister, that got so much done. And also, because it was their change, their improvement, not mine, imposed by me as the ward sister, so ... but Gill, what I didn't do. And I have learned from you ... in future, I would bring cake.

 Gill Phillips  11:52

Lemon Cake, 

 Terri Porrett  11:53

Lemon cake, we'll get on to the lemons in a minute. Rachel, what would be your top tip?

 Rachel Jury  12:00

My top tip, if you're in QI and you're about to start doing this and want to know how to do co-production, is to be brave. So my experience has been that when I've worked closely with my local trust Bournemouth Hospital, some of the staff took a risk really because it was kind of ...You're changing. It hasn't been done before, or there's concerns about what will happen if a patient gets into the room. But actually amazing things happen. So it would be to be brave. You know, I was ... eventually after this one director kind of jumped through hoops and hit a few walls as well, I was on the interviewing panel for Directorate roles, and I was able to ask those blunt questions on what does co-production, and what are you going to do for co-production. And at first, there was some resistance. But then we persevered. And afterwards, even the candidate said, it was amazing to have that voice. And other people I believe, are doing that now as patient voices. So it would be to be brave, and you don't know what you can create. Because actually, getting the experience in the room, whether it's patient or carer, really changes the conversation. And it's starting it from the beginning, it's not going okay, at the end, let's grab in, let's just tick box, it's really, really listening. And being there and taking equal voices, you know, taking on board the suggestions that they have, able to really listen to maybe what's not being said, and being open, because a lot of it is also to be open and able to change, maybe a plan might go a certain way. But actually when the people that are using a service ... okay, we need to adapt it this way. And also, you never know what you can give to that person. So for me, I've grown. You know, I lost my 20s, I was just an absolute shell. And now I believe in my 30s I'm living my 20s and I've got my purpose back, we're out there, it's just trying to access us, you know, and using social media going onto, well, Gill's 'Wild Card', and be able to find people in the trust, you know, go into the volunteers ... there's lots of people want to know something when something bad happens to you with illness or whatever, you want to have something meaningful come out of it. And I think a lot of people just want to have a purpose and have a reason why. So yeah, those would be my top tips.

Terri Porrett  14:20

Yeah, well, I can't disagree with anything that you said. And I think what's so helpful in the chat, Rachel has put this fantastic, bright lemon-coloured digital postcard that Gill has prepared for you with her top tips, but also with resources for you to look at that are all around the themes that Rachel and Gill are discussing now. So that this isn't just ... this thing gives you further information templates, examples to actually click on and and use rather than starting with a blank piece of paper. Now, I wonder if in the digital world, do you ... so much of what we do now around improvement, efficiency is around using digital technologies. Gill, how do we make? How do we not lose the person when we've got tech in the room? If you understand what I mean?

Gill Phillips  15:31

I think that's a really interesting question. And last week, we actually did a Whose Shoes workshop for Baby Loss Awareness Week in Birmingham. And I was telling the story of some work we were doing earlier, which was almost a kind of social experiment in a way with hindsight in terms of digital compared with 'in the room'. And we had a pair of workshops around baby loss with first of all Colchester and then Gloucestershire, two fantastic teams, and we were using Whose Shoes to test out the National Bereavement Care Pathway. And then, note the date ... the first workshop the Colchester workshop was the 6th March 2020. What do you think's gonna happen? -  and sure enough, the second workshop, which was meant to take place as a kind of pair of workshops in a way, looking at different aspects three weeks later in Gloucestershire, and it was a year later - because it took that long to rethink things with a subject as sensitive as that, to be able to do a workshop effectively online and hopefully, to take all the good stuff in terms of energy. And you know, genuinely valuing people, listening, creating a space for people. I think, Whose Shoes is very much about creating the conditions for people to really feel that we're genuinely interested in what they are going to say and following up with them, not for them or at them and so on. And digital can be really, really powerful. So, for example, in Gloucestershire, we could bring in an expert speaker, who has only got to make 15 minutes of their day available, rather than either choosing to come to an event or not. I think we had 15 bereaved couples, so actual couples at the session, whereas in a live face to face event, it'd be quite unusual to get a couple to come along in terms of just people and their lives, and be able to come. And we always give people if you like ... turn your cameras on, off, contribute live. And that's difficult online, because you've got a limited amount of time and space to actually hear people's voices first-hand, you know, to actually turn their cameras on or unmute themselves and speak. But everybody can speak about everything in the chat all the way through, to be able to turn their cameras off. And that was,  very, very powerful. I was imagining these people sitting there, they were able to just listen, they were able to check in as they wanted, to go and get a cup of coffee or whatever. It is different. But I think digital for me can be used very, very powerfully, but you've got to put a huge amount of work into it. And certainly our sessions were planned, minute by minute to try and keep the energy going and to keep everybody engaged; huge amount of work goes into it. Whereas the live sessions, the Whose Shoes sessions, to some extent, the main work is the research and development to develop the right scenarios, to make the cakes, to make the atmosphere and then it kind of like runs itself in a way -  so very, very different, but not necessarily better or worse. I think.

Gill Phillips  19:03

Rachel, has that been your experience as well?

 Rachel Jury  19:05

Yeah, yeah, definitely. Digital, as Gill has said, is so powerful, but I think is also being able to find different mediums ... mediums where maybe people can't access digital, digital, and find ways around it. But I found, I think a video is very powerful, and it speaks to people and it's ... in a world that we live in now, you want to try and grab attention really quickly. And I think media like videos can do that, doing on an online I think is good, as well, because especially if ... say the lived experience isn't ... has accessibility issues, or it's having a bad day, it's really good to be able to do it from home, you know, and then ... because actually doing ...getting into a place and delivering a talk or being part of a session, it takes a lot out. And now I think COVID for me personally has made me realise how I do need, I do find it easier because it is less kind of preparing, and then you're able to give more because you're not as tired.

 Terri Porrett  22:18

Yeah. Okay, well, look, I think so we have a number of people in the audience. Jenny's Oh, I see Seb . And Emma, look, I don't know guys, do you want to turn on your cameras? Do you have ... this is your opportunity to ask, to run ideas, run things by Gill and Rachel. So Jenny, you turned your camera on first. So then you're you're going to kick us off with a comment or question or whatever.

Jennie Negus  20:06

Oh lovely, thank you. Rachel and Gill, you ... I just sit in awe of the work that you've done. And you're just so inspiring. And it was  on the back of meeting you either virtually or in person through Fab that I really started on my co-production journey. Struggled primarily, you know, it's a big job all on your own in an organisation, but we're getting there. Now we've got an award-winning patient panel and we're beginning to develop expert reference groups because we struggled to get the sp ecialties to host and own and look after experts by experience but having an expert reference group feels a bit more manageable. But I think my my question ... and it is the highlight of my month, I meet every month ... the technology has made a huge difference. So we have a monthly patient panel. Our expert reference groups, got four of them now, in cancer, dementia, sensory loss, and what's the fourth one? It's gone out of my head ...  breast mastalgia pathway, and about to kick one off in cardiology. But I think the big thing that I ... I don't struggle with, but I'd be interested ... how you manage expectations. Because there's often you know, really great ideas and and there's something about actually you have to keep your promises in order to keep your patients and their families genuinely involved and believe you're not just ticking a box ... it's probably managing expectations is my thing that keeps me awake at night.

Gill Phillips  22:18

What do you think Rachel? Would you like to go , or would you like me to say something?

Rachel Jury  22:27

Yeah, I can answer. I think straightaway, as soon as you said that, I've experienced that myself. And I think it's being open and transparent. And I think as long as you, we understand that you're not able to change things overnight, but it's being able to explain that things can't be, you know, we can make these small steps towards the change, but it's being open and transparent. If you just hide and go, "Oh, yeah, we're gonna we, you know, we will be able to do ..." But if you are honest, we can reciprocate that. Because I think when you've been through a lot as well through health, you not doubt things, but it's ... honestly works. I do think that if you're able to just say that, that helps manage the expectations a bit more, if you're not able to deliver on something is to say, "Okay, it's a great idea, we'll, we'll shelve it here. It doesn't mean we can't, but we got to build infrastructure, if it's a digital improvement, or whatever, but we will do it. It's just, it's not being afraid to go "I'm human as well". Because actually, we're all a patient in waiting, as Terri loves to say, and, and it's understanding, okay, but it's not 'us and you', we're all in this together. And you know, you're human as well. And, you know, things can't happen overnight. It's just having that conversation, and it's being able to be honest, and to keep that passion going. Because we can sometimes, I know sometimes I've been a bit uptight, or because I'm really passionate about something. And it's, we are learning as well, you know, and I think it's just that whole learning environment.

Jennie Negus  24:00

That's brilliant. I'm clearly on the right road then because I ... we certainly tried to do that. And, like you say, the learning as you go along. A few of our sessions,  we've used them, almost like training, we sort of introduced our panel members and our experts to learn a little bit more about how the NHS works or how the system works, that who owns what and who can influence what, just so that they're grounded in, in the in the real world, if you see what I mean. But I've also found that I think that's where some of the hesitancy comes from our specialists, a lot of our doctors, I don't know if there's any doctors in the room, but a lot of our doctors, they love the data and the stats and the the qualitative quantitative stuff, don't they? So they'll say, oh, one patient voice, you know, is that representative of the whole, you know, and I'm going well, if that was your mum's patient voice, it would be. It'd be, you know, shouting loud for it. You know, so managing some of that has been, it's probably what I focus a lot on, but you're right, at least I'm on the right road, I really try to be open and tell it how it is really, and give ... give genuine expectations back. You know, I won't say I will deliver this year by the next meeting, or I'll find I'll try. I'll do my best. 

Gill Phillips  25:29

I think that's a really interesting conversation. I've got, if it's okay, two examples to add to answer Jenny's question, I think. So I think in terms of managing expectations, you know, I think Rachel's answer was was spot on, if you're honest with people, and if you work with people, and I think I'd sort of add to that, and if you take away ... the kind of tick box mentality. So I had a bit of a battle. So it's actually ... I've realised, I'm quite excited about this, ... it's eight years today, since our first #MatExp Whose Shoes workshop. So it wasn't the first Whose Shoes workshop, but in terms of the work we've done in maternity. And it took me back in terms of listening to you there. Jenny, I was battling a little bit. We were doing some formal kind of evaluations with NHS England - would Whose Shoes work in maternity? And I was battling a little bit the idea of a spreadsheet. And we've always had pledges. So to try and get people you know...  I'm very big believer that people are not just genuinely wanting to improve things, but they're individually ... they've got their own passion, about something that really really matters to them. So we've always invited people if they wanted to, to make pledges. Now, as soon as for me, it goes onto a spreadsheet with like, date! pledge made! what the pledge was! tick the pledge off, and as soon as possible ... it will kill it dead. But Florence ... so, as i say, eight years ago, today, Florence Wilcock and I were running the first #MatExp maternity experience workshop at Kingston hospital. And she was nurturing people like, "how's your pledge going?" "Oh, I've pledged to make a graffiti board so that people can write their comments as they come on to the maternity unit. And we're gonna have a big black board and we're gonna have chalk and we're going to have the siblings writing, you know, "Welcome baby such and such", it's gonna be fun. But I've met resistance from health and safety and this and that and the other. And eight months later, that pledge happened in its own time. And then it was replicated. And then it was in a Fab Change Day type idea that got replicated in other hospitals. But because it was genuinely kind of nurtured in its own time, rather than trying to fit it in a box somewhere. Now, in terms of managing expectations, and this is a really positive story, it can work the other way, genuine, genuine co-production, would you have expected that at the first workshop in Liverpool that we did, so Whose Shoes workshop at Alder Hey Hospital in Liverpool, that you would end up with a new neonatal surgical unit in Liverpool? And what I love about it is it wasn't even, as I understand it on the radar. It genuinely came from using co-production, listening to people, and then finding out what actually, you know ... the fact that the hospitals are four miles apart, and the babies are being transferred, and so on, what we really need is this new facility, and then to be able to use that co-production as part of the business case to say, "Well, look, we've really listened to people. It's not what I think or what you think it's what we think that we've all got together. And this is the obvious thing that's come out of it". Now, as I understand it, that's the story. So that's way beyond expectations, but only because people were really listening.

 Terri Porrett  29:05

That's amazing. Does anybody else have a question or a thought that they'd like to run by Gill and Rachel, you don't have to turn your camera on. Just turn your microphone on. If you've got anything you'd like to to ask? Well, I'm going to say one thing ... so I, my clinical world is stoma care, colorectal. And I went to a trust , Princess Alexandra Harlow, actually, to a Quality day they were running, and I saw for the first time in action a Whose Shoes tabletop exercise with members of staff. And the questions that staff were having to answer - what would you do if and what do you think about this comment? etc. And I thought, "Wow, I want to do this, but I want it to be specific for stoma care". Now, I contacted Gill and Gill actually developed in conjunction, we developed some questions or scenarios around colorectal and stoma care, that would really resonate with specialists, nurses ... Unfortunately, good old COVID totally and utterly messed up our day, our face to face day. And we are yet to ... but we will, Gill, make this happen. So to know that, although if you look at the fantastic resources Gill has, working with Gill, as many, many trusts do, you can look at developing resources specific to the area that you want to explore and work with. So it's not  just maternity experience. It's not just neonatal. This whole process of how you think and challenge thinking and learn from the responses can be adapted by Gill, and that's something ... isn't that something you're doing for the Leadership Academy, Gill, or have I made that up?

 Gill Phillips  31:09

Well, we've got all sorts of bits and pieces going on. The Leadership Academy might be like the Darzi Fellows that I work with, which is more generic. Patient Experience resources. But, Family Integrasted Care, we're doing a new project at the moment, and also around children's services with a Midlands NHS Trust. And its capacity, and it's trying to make sure that you know, quality is what matters. So take on less projects and do them well. But yes, our project is sitting there in th e background, Terri ...

 Terri Porrett  31:43

Oh, it's going to happen

 Gill Phillips  31:20

We'll make it happen.  

 Terri Porrett  31:24

yeah, yes, yes. Well, look, if there's no other questions or comments, I'm looking at the time and we're sort of on time, just to say that in the chat ... If you click on the chat, you will see that Rachel has put some resources there for you. So you can download the digital postcard made by Gill which is her top tips as kind of bullet points, but then all of the links to further reading and resources to help you explore these areas further. So please be for the A meeting finishes, if you click on that link and download your postcard for those of you that have colleagues that you think would really benefit from hearing this discussion at the end of the week at the end of the festival. So next week, all of the chats will be edited all of the resources. But all of the resources will be available for people to watch on catch up, and we'll start advertising those next week. So you'll see that on social media, and also there'll be shares and links on our website so that you can disseminate these ideas or if you think people would benefit from hearing Gill and Rachel's insights, you can share the video with them, so. So, thank you, Gill. Thank you, Rachel. Thank you, not just for today, but thank you so much for how you are changing the landscape. And as Roy always says, you make it a reality. You start with the patient and work backwards. Whereas as clinicians often we start with "This is what my service is, how can I jig it a bit so that it's ..." So yeah, so you really do walk the walk. So, on that note, I'll say thank you, everybody.