17. Rachel @Rocking2Stomas

Today's guest, Rachel Jury, is winner of the National Diversity Award 2018 for positive role model for disability.

She tweets as @Rocking2Stomas, and refers to herself as one of the community of ‘Double Baggers’. 

I’m looking forward to helping break a few more taboos by hearing Rachel's story today. 

Lemon lightbulbs  🍋💡🍋s

• We all need purpose – it is not about ‘catastrophising’, it is about compassion and being supported to move on with our lives
• Don’t assume that because you have said the words, the other person has understood, processed the news, consented
• If people get given life-changing news, they deserve a follow up. How are they coping? Do they need any support?
• Some subjects are taboo and need to come out of the closet.
• Don’t just concentrate on the medical, the physical. Ask real questions like “how is your sex life?”
• Healthcare professionals are afraid of getting out of their depth if people ask ‘real’ questions and they don’t know how to answer / explore honestly. They need training to be able to support people properly.
• Healthcare professionals can assume they understand – but having lived experience brings a whole new perspective. You really can’t! Just listen!
• You need to meet people where they are. People will have a very different capacity for taking in  detail and engaging with it – different individuals, but also the same individual at different points in their life.
• Being bold makes an impact – people remember. Changing a stoma bag on stage!
• The importance of connecting with others and finding your tribe.
• Helping people walk in your shoes. They will remember the experience!
• Trust people. It is so humiliating when they do not believe what you are saying. 
• Don’t have assumptions and expect people to fit into your boxes.
• Unsung heroes. Remember the people in the NHS who are not doctors or nurses but make a huge difference to patient experience – the cleaners, the porters … anyone with compassion!
• Little things matter. Little acts of kindness. A bit of banter. Humanity.
• Talk to me! I can tell you how to improve. You don’t need a formal system, just come and chat to me. Listen.
• Coproduction - it matters. I can help you!
• Language and terminology. If you get it wrong, it is at best confusing, at worst dangerous!
• Good practice is catching. Let’s be generous in spreading the word about what works and what matters.
• A Wild Card party.  … Ooh, I like the sound of that! 

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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.

Chapters

• 0:49 Introducing Rachel. A positive role model for disability!
• 2:10 Early dreams – wanting to be a healthcare professional
• 2:21 Aged 21, my organs begin to fail…
• 3:00 A very dark place. I lost myself. I was a victim, I love people around me
• 3:21 The ‘Double Baggers’ community. Finding my life again and starting to find my purpose.
• 4:34 ‘Catastrophising’ ??
• 5:30 Being a whole person. A woman. This needs to be recognised – beyond the medical!
• 5:50 Steps to wellbeing. Finding a new future… but nobody asked …
• 7:20 Rocking two stomas. Educating others. Helping others. That is now my baby …
• 7:33 Talking about taboo subjects. Sexual function. And so much more.
• 8:10 Sharing lived experience!
• 9:00 What matters to me! #WMTM! Look beyond the medical stuff!!
• 11:30 Being heard. Healing..
• 11:49 A key question that was never asked. How is your sex life?
• 12:57 Fear amongst healthcare professionals. Will I get out of my depth?
• 13:10 Terri Porrett - and Fab NHS Stuff! Sharing the good stuff!
• 14:02 No substitute for lived experience! Put yourself in the patient’s shoes!!
• 14:14 Put yourself in the patient shoes!!
• 16:04 Meet people where they are. This will depend on individuals. But also where individuals are on their journey
• 16:27 Walk in my shoes! A practical exercise, devised by Rachel.
• 18:45 Healthcare professionals struggle to walk in my shoes. To talk in the first person. To take ownership of the emotional response
• 20:32 Changing a stoma bag on stage!
• 22:05 Connecting with other people – becoming stronger together. Finding your tribe.
• 22:35 Making a difference – people will remember and change their practice
• 24:00 Helping others. I was once in that dark place!
• 24:47 Special people who help you along the way
• 25:23 Trust. SO humiliating when you are not trusted. Don’t expect people to fit into your box.
• 29:52 Unsung heroes in the NHS. They are everywhere. Certainly not in positions of formal power or medical expertise.
• 30:27 The little things matter! Banter! Plaiting all my heart
• 34:00 As a long-term in-patient, I see what happens! I see the scope for improvement. But does anybody ever ask me?
• 35:59 Coproduction. It matters!
• 36:45 Language and terminology. Getting it right. Work matters. Where it can be dangerous to get it wrong.
• 41:31 Scope for a language campaign. Join us!
• 47:35 Good practice is catching! Rocking two stomas. Spreading the word.
• 48:45 A Wild Card party! Let’s do it!

Transcript

Gill Phillips  00:11

My name is Gill and I'm the creator of Whose Shoes, a popular approach to coproduction. I was named as an HSJ 00 Wild Card, and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of health care, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you. So we're back for another episode of Wild Card Whose Shoes and it's brilliant to see how much networking is happening already through the series, including people suggesting new podcast guests. So it was Terri Porrett, Episode 12, who introduced me to today's guest, and I'm so glad she did. Welcome Rachel. Terri told me that you're a Wild Card indeed. And she certainly right there. Today's guest Rachel Jury is winner of the National Diversity Award 2018 for positive role model for disability, she tweets as @Rocking2Stomas, and refers to herself as one of the community of double baggers. I'm looking forward to helping break a few more taboos by hearing Rachel's story today. Hi, Rachel, can you tell us a little bit more about yourself, and what's important to you?

 Rachel Jury  01:37

Hi, Gill, thank you so much for the introduction. And yes, the double bagger community and that made me smile. And I'm sure I'll talk about that a bit later. I just want to say it's such an honour to be asked to be on this podcast. I feel like I've watched from afar. I run the social media for Academy of Fabulous NHS stuff that shares best practice in the NHS and I have followed Whose Shoes for so many years. It really is amazing to be here. And I've always seen it from afar, but I've never been part of a workshop. So yeah, it's great to be on here. As you said, my name is Rachel, I'm 35 years old. I live in Bournemouth now and I'm originally from Wales. And growing up, I always wanted to be a healthcare professional. That was my dream. I just really wanted to work in the NHS. And my story consists of a healthcare professional to patient and how that's gone for me and how that's felt and how that's been and, and it's been, it's been a challenge. You know, at the age of 20. You're in your career, you at university and I knew I wanted to work in radiotherapy. I wanted to go live in New Zealand, there was so many things I wanted to do. And my organs began to fail. My bladder and bowel began to fail at the age of 21. And I had Campylobacter food poisoning and they just stopped working. So yeah, and, and then from there, I went from depths of despair really, totally lost myself. I got my job. I was able to work for a little bit. And then I wasn't working and I just lost myself. I was a victim, I lost people around me, I lost a sense of who I was. And it was just really dark. And as things were getting worse for me and my health was deteriorating. It was a struggle just to be here. You know, it was a struggle just to keep going. And it wasn't until I had my second stoma in 2015 when I had my urostomy It was then that I met a community I started a blog I found people I wasn't alone anymore. I found my voice again. And I was able to kind of really look at myself and change my mindset. I had my ileostomy when I was 24 in 2012. And and I struggled with it, you know and yeah, when  I found people there after my second stoma and there was a big, a big sort of mind shift. Now they're my two buddies, you know, they help me get through life, right? So many doors of opportunity have opened, I just decided that enough is enough. Let's make make something out of this now.

 Gill Phillips  04:04

That's amazing. And I'm hoping that this podcast, Rachel does that for you as well. It will be a resource won’t it,an opportunity for you to tell your story. And for people to hear that story. And already it's blown me away because it's inspirational. I mean, I can't imagine that happening and at such a young age. But I think what you talk about in terms of mindset, you know, the victim mindset or choosing something else and I'm so glad that you've chosen something else, but it must be hard.

 Rachel Jury  04:32

Yeah, it was hard because I think I didn't realise I was really in it. So when I moved from Bristol to Bournemouth and I had a super pubic catheter and had a super pubic catheter for seven years and I had my ileostomy I had some complications with my ileostomy and due to the super pubic catheter I was bed bound I was in so much pain I just couldn't function. And when you're in so much pain, it is really easy to kind of go down into it. Now looking back, I can see when people said oh, you're catastrophizing. But I wasn't at a place where I was able to kind of build myself up to be able to do some of the suggestions. But when the cells had mutated in my bladder and I got told at the age of 28, I needed a second stoma, my world collapsed, because I just thought, how am I going to cope with two bags, I didn't like the one I had. I just thought, I just can't believe this has happened to me. All my life, I wanted to work in the NHS, I had all these dreams. And now I'm not able to do anything. I'm not able to be a woman to my partner, I'm not able to have a sexual relationship because it was too painful, I wasn't able to be … my whole world just collapsed. And when I went to my appointment, I brought one of my close friends with me. And they told me I needed a second stoma and I completely missed a lot of the conversation. And on the way back on the bus, my friend thought I was a bit too chirpy. And he said, Did you hear that they said that you can't have children. And I looked at him. And I felt like he just punched me in the face. Because I completely missed that aspect of the conversation around having my bladder removed around the way that it needs to be removed, that I'm not able to have children, I wouldn't be able to carry. I completely missed that. And do you know what? Nobody's ever followed up on that? So I had my surgery a few weeks later. And this surgery was in 2015. Nobody's ever said to me, he No, you know, we told you that, how do you feel about it? Do you need extra help, we know that you're of age and, and it was about two years ago before COVID hit, it was really affected me a lot of people around me were having children. And I really, you know, I love to have kids. That was one thing, I always wanted to have kids. And it really brought me to my knees. But I went to Steps to Wellbeing. And I had some support. And I accepted that, you know, I know I'm like auntie to lots of children. And I'm okay with that. You know, and I think I might even set a chess club up with some children in a school because I do like chess and, and I might get the kid energy that way. But again, it's for my journey, there's been lots of layers of acceptance, you know, accepting that I'm not, I'm not perceived the person that I thought I was all those years ago and and how I thought my 20s would go and my 30s. But now, I suppose like rocking 2 stoma’s, I, share my lived experience, all the work that I do the many hats I have, that is my baby. You know, when that's something that I can nurture, and I can it's, you know, part of me, but But I wish somebody could have gone back to me and said, I'm sorry, you have this. And it's those kind of subjects, those taboo subjects that people need to be more open about and talk about. I know in healthcare profession, they are trying to talk about sexual function more. I do a lot of talks around sex and disability around asking people, you know, it was impacted me It affected my sexual function, having the surgery and the complications. But I felt instead of actually going to my team and saying, This is painful, I need a referral. I did a talk for British urological nurses, 200 nurses, I did a talk the year before, and they said, Oh, can you give a talk about … its male and female sexual dysfunction conference? And can you give a talk about your perspective? And I said, yeah, yeah, I was really, I think I did 42 talks that year. So I was really on it. But yeah, I do talk. And I suddenly sat, then I thought, Oh, you're joking. I have to talk about… I thought, I haven't even told my team like, so I did this, this presentation. And I called it my secret journey. And you know what I, I broke down. It was the best, but also the most emotional talk I've ever done. And I said, this is an issue. Now I'm standing here in front of 200 nurses talking about how this has affected my whole being and not being able to be sexual because of pain and trying to find different ways to fix it like by getting dilators etc, which isn't safe. Yet, I can't talk to my team about this. And nobody's ever brought it up with me. And many times I wrote it on a piece of paper saying you know sex is painful, tell the doctor and then they'll talk about my kidneys or about my urosepsis admission. And then it's like what was not as important, but what mattered to me is that I can't be a woman and it took me to a really dark place. And I'm very vocal, as you can probably see, I'm quite open

Gill Phillips  09:25

It’s brilliant

Rachel Jury  09:26

But it's something that I couldn't talk to my team. And it wasn't until another talk I had to do on sex and disability talking to European conference. And my doctors, my GP said to me, Oh, if you've got any talks planned?, I said, Oh, yeah, I'm doing one about not being able to talk about sexual function and it impacted me and he looked at me closed the door when I was about to leave. And he said, come on then. And I told him, and then I got a referral to gynaecology, there was some physical things that I can't have surgery because surgery is difficult now I've had so much but I had a referral to psychosexual and I had a referral. And that's that's what I so desperately wanted. And doing the talks helped me but I was unable to have that conversation.

 Gill Phillips  10:11

There's so many layers to that as well. Rachel, one thing I picked up earlier and what you said was about… it just jumped out at me when you said you're catastrophizing, and what a judgement is that you know, what is a catastrophe? personal catastrophe, all your dreams, as you've described so eloquently being taken away. Who is someone else to tell you that you're responding badly to that, I bet you sometimes want to … put yourself in my shoes, you know, for that person to actually see how they respond to that situation. And then another thing that jumped out at me was how it sometimes takes something extreme to be able to talk. So I remember when I was talking to Yvonne Newbold, and suddenly, she told her story on Woman's Hour, she'd never felt… another taboo subject violent and challenging behaviour in children. And she'd never been able to talk about it. And then suddenly, a skilled facilitator got her very naturally talking about what mattered, and all the fantastic good, that's come as a result of that, because these subjects need to be talked about. And then for you to say that a healthcare professional, you're crying out for them to actually listen to you about what matters to you. And then that's probably the bizarrest way that that could ever have happened. But hey, it happened for you that someone's listening, then.

 Rachel Jury  11:32

Yeah, it is. And also, it's for me, I feel like I've had healing in that area. And there's ways around it, and it doesn't impact me so much. But what I've also known is really community through the stoma community and through , I think it doesn't matter what condition you have, sexual function needs to be talked about more, mental health can affect sexual function, it still seems to be very much healthcare professionals are afraid of how do we bring it up? How will the other person will they be offended? How do we even talk about it? And it's more to do with their fears? I think then actually, for me, I was desperate for somebody to say really bluntly, “how’s your sex life?” that was what I was desperate for somebody to say, for me who so open that I just couldn't, I couldn't say because it was the acknowledgement of a part of me that I don't know if there's, there's shame to it. I'm not sure but there's a part of me that it really impacted me, but I couldn't actually say it. And there are lots of people that have been in that place. But as Terri and stoma nurses, they are bringing us up more, they are talking about sexual function more, there's more education around it, how to talk about it, but I like to see it throughout though I like to be you know, when you've got the tick boxes, and you know, have you asked the patients this x y z I would like to see sexual function being part of that. Yeah, yeah.

 Gill Phillips  12:57

And the whole tick box mentality and that whole from a healthcare professional point of view of Have I got the training to know how to respond if someone answers in a way that's going to take me deeper so there's so many layers. And as I understand that the training that Terri provides for healthcare professionals to understand walking in the shoes of someone who's got a stoma or 2 stomas . What a combination you two are!!

 Rachel Jury  13:24

Oh, yeah, Terri is brilliant. I love her to bits and she's she's opened lots of doors for me as well and doing the work for Academy of fabulous stuff I felt to do my degree to do my degree in radiotherapy and oncology and wanting to work in radiotherapy, to now be able to be back in the NHS but a different capacity you know, sharing some great stuff that happens all around the NHS and great innovations, seeing the Whose Shoes movement and so many things. It's such a privilege to now be able to be back in the NHS but in a different capacity, not the hat that I did have. And actually I was reflecting the other day, when I was a therapy radiographer. I was a little bit arrogant, you know, and I suppose arrogant in this respect that I thought I got it but until I've gone through my own experience, I didn't get it. You know, I thought when you are taught everything and you are treating patients and it wasn't until I got ill myself I realised the impact of, going through investigations to waiting for the results to come back the fear all of that and we can be taught it and we can be told it but when you actually gone through it and expect the lived experience when you've gone through it, and you've really experienced it then you can see how the impact and that was what was missing from my practice. And if I went back now and I worked as a therapy radiographer, I will be so different because I didn't get it, but I get it now. And that makes me feel a bit bad. But that's my truth and that's why when I do talks to healthcare professionals, I try and say it's put yourself in your patient’s shoes, and you might not totally understand it, but how they might feel because unless you've been through it, you won't fully understand. But your communication will be better, you might understand somebody is not able to really talk much. You know, for me, when I had my ileostomy in 2012, I couldn't even nobody could talk to me about it. I was so unengaged I questioned as to whether I was fully consented, I listened. But I just wasn't able to take in, I couldn't believe this was happening to me. But then roll on 2015, and I'm looking on YouTube about my cystectomy bladder removal operation a day before I'm watching it on YouTube. So I was totally different, you know, then I was really able to go there, back then I wasn't and being a healthcare professional, I was quite shocked that I didn't want to know anything about it, I thought I would want to know, everything. I just thought I can't believe this is happening to me. And I switched off.

Gill Phillips  16:04

I think there was something important there about meeting you where you were. So you know, as a healthcare professional learning, there's so many skills required aren't there in terms of what that person's going through now, and the fact that I've said the words is very different from you hearing the words, understanding the words, taking it in consenting, because you're in shock. So you came up with, as I understand a fantastic exercise that you said, was inspired by Whose Shoes but it's something different from anything I've done. And I thought it was amazing. So do you know what I'm talking about? And can you tell us about that?

 Rachel Jury  16:42

I do. Yes. And it gives me great pleasure to talk about so as I said, I've got many different hats, but I, one hat I have is I'm a part of PIER membership in Bournemouth University. And PIER means public involvement in education and research. And it's basically service users, patients voices that are used to help teach students and used in sessions. So you've got the lived experience, you know, you're not just written down. It's the real person. We get involved in roleplay sometimes. And I was asked by Dr. Mel Hughes, who I've got, you know, a lot of respect. And she's amazing. And she's Associate Professor in social care. And she's the academic lead for PIER. And she asked me, can we design a session for third year social workers on learning from lived experience. And it was basically based on a book that Mel wrote. But she co wrote with about 10 other service users, and also other social workers that wrote a chapter. So I wrote a chapter in this book. And the book is a guide to statutory Social Work interventions, the lived experience, and my chapter was direct payments. So it was my experience of direct payments. And I talked about it. And then a social worker I was assigned to, she also wrote in between as well. So it's a really good book and  Mel’s  very passionate. So she asked me and this other a lady to kind of design a session. And it was for third year students, and it was to do with the book. And I remember looking at all the work you did on it, because I hadn't been to any workshops. I just like the idea of the Whose Shoes so I, I put it to her, I gave her your Twitter handle. And I said, How about we do this session, instead of me just talking through my chapter, how about we get the students to read the chapter. And then from there, they have to literally put themselves in me. So there was my chapter, and then another lady who had been through care as a child, so put yourself in her shoes, and as a child and my shoes. And then they had to write down how we felt, what was going through our mind, what was important to us like they had to, and you know what, it was one of the best sessions I have ever, ever done. And we had never done it before. And it was really just went with it. And Mel was so open to my suggestions. And that is probably more development within it. But the students and what was really surprising to both me and the other lady was that they really struggled to say “I”,  when they were presenting, they had gone away and come back and we did all this on Zoom, because it was doing COVID When they were presenting they couldn't say I felt scared. You know, I, I felt that I was going to be put, I wouldn't be able to live on my own personally for me, I was scared that social workers were going to say you can't live on your own anymore. That meant a lot to me. And he really struggled to say I and and now and both of us were saying you got to say I,  you're in my shoes, and they felt level what if we got it wrong? And we had this open conversation around it like what if we got this wrong? If it isn't right, and they've really learned a lot from it. And yeah, the feedback was fantastic. So I look forward to doing more sessions like that and that was inspired by by what you did you know, different but similar roots, just that whole, put yourself in my shoes as if it's me, it is me and how am I feeling? Yeah. Another thing around training that you've mentioned to me before Rachel was, didn't you do something outrageous or that would perhaps commonly be seen as outrageous with 900? Nurses? Oh, yes. I was worried then. thinking oh, well done a few outrageous.

 Gill Phillips  20:28

Well, I could have hooked you into telling us a different story.

 Rachel Jury  20:32

Yeah, um, oh, yes, that one. So I was asked to go to Copenhagen as part of… I’m a Coloplast, ambassador as well. So I use Coloplast bags, and I'm an Ambassador and, and I was asked to go to Copenhagen and to change my bag on stage in front of about 900 nurses with Terri. And that was when I really first met Terri the week before. And also with another great guy Steve Cartmell who’s also got stoma , and we went out together and, and yeah, changed my bag on stage. And I've got a very large prolapsed ileostomy. So my stoma is a lot bigger than it should be. And Terri and I had great fun while I'm on stage talking about urostomy awareness and what I'm really passionate about. And she's trying to push this prolapse in going it's not good going in. It's not going in. And all these nurses, but it was, it was brilliant, that had never happened before actually live on stage sort of changing stoma bag and, and some of the comments afterwards were really great. And at times, I kind of look back and I think to the girl that I was so scared, like broken and, and lost and just completely had no voice to now being on stage in front of … who hated public speaking, changing her stoma bag that isn't isn't pretty because it's so large, you know? And yeah, I just thought yeah, this is the gift of actually, for me, it was like, the key for my healing in my journey was identification. And I really try and when I do my talks is and connecting people you know, through digital community through groups through finding your tribe, within whatever health condition you have, or even lived experience advocacy know like Carol and Cristina,, I met them through doing a talk and like they're brilliant and finding like minded people and and you feel part of it again, that's what's helped build me to the work I do now and have the acceptance of myself now.

 Gill Phillips  22:34

And you can feel that your passion comes through in that community and that encouragement, really, that support to be a little bit more bold, a little bit more honest, really, and all the different topics and the different types of conditions that people have got or challenges that people have got. But that community of friends. And I think I mean, I could promise you that those social work students at Bournemouth University, and those 900 nurses in Copenhagen will never forget that experience that putting themselves in your shoes out of their comfort zone thinking about how they felt when they were told that news or watching you the reality of your life on stage and very, very courageous to do that Rachel, and the contribution that you're making, I suspect it will be bigger than you would have made however good a healthcare professional you would have been, that the contribution that you're making there will be bigger.

 Rachel Jury  23:35

Yeah, funny you should say that because I actually was a patient partner to the director of surgery at Bournemouth hospital. And through the Nye Bevan leadership programme, they asked for him to have a patient partner. And he said to me, he said the work you've done now and do will have far greater impact than the work that you would have done as a therapy radiographer. And that really meant a lot to me. Because that's all I wanted to do was to help other people and to go into a caring profession and through my own adversity, I'm able to do that, you know, my bread and butter with the work that I do is helping other stoma patients who are about to have a stoma, or newly have a stoma and they're struggling, and they have questions and that's my bread and butter. I love talking to healthcare professionals. I love giving talks and different aspects of my journey at different aspects of my hospital care and other things that I do and research. I love that actually there's something about helping somebody who I've been there that reminds me where I come from reminds me, you know, when I was scared when I had nobody and I wanted somebody that got it and I wanted to speak to somebody that could it it helped me remind that but it stoma nurse said to me, he's one of Terri’s friends in Copenhagen said to me, rock the boat. Just don't tip it over the best advice he could ever have given me and that's what I've done throughout my journey as a patient advocate. I have rocked the boat slightly, but I haven't tipped it over yet, to help get messages across and yeah, that's been a great, great little line.

 Gill Phillips  25:11

Yeah. And I think those people, those phrases, stick with it and those special people and probably how he said it as well, you know, you'll remember that whole mantra really. And being young like you I'm and I remember when we were talking before you told me that some clinician hadn't trusted you. Something so as is actually believing that you'd had your bladder removed. What was that about?

 Rachel Jury  25:35

Yeah, so because my bladder has been removed, I get urosepsis quite a lot. So I have had it 15 times since 2015. So I've, I've had it a lot. And touch wood, I've had a year out of hospital, you know, no admissions, four episodes last year. So yeah. And one of  the admissions I was in, I was in A&E  and a doctor came to see me and I said I had two stoma’s and my bladder had been removed. And he just didn't believe me. He just was shocked. You know, because I look young. I don't look deemed as somebody you know, it's unusual to have two, although not as unusual as you think it is now, but it's quite a bit shocking. It was to see me so young and female and looking looking okay, you know,L

 Gill Phillips  26:20

Looking good.

 Rachel Jury  26:21

Yeah. Well, yeah, maybe. Yeah. I don't know if you can look good when you're in A&E and you're…

 Gill Phillips  26:27

You look good now,  just for the listeners because they can't see. And I’m watching the video

 Rachel Jury  26:33

Thank you. Yeah. And he didn't believe me. And what happened is he then I think he did look on the system. But he went and got an ultrasound scan and scanned me to double check that I didn't have bladder. Now how humiliating. And I was so poorly, I didn't actually bring that up with anybody. I just went with it. But in some research that I've been doing, and some connecting with other patients with urostomies, it's come up that actually the younger ones have had clinicians not believing because we don't fit into a box, you know, because apparently urostomies  are, for older men that have had bladder cancer, actually, they're not. There's so many reasons that people can have their bladder removed, or their bladder will stay in place, and they have a urostomy or any urinary diversion, you know, and it's just all because it's not still in this day and age, you'd think it would change now, but just because you don't fit into a box. It's then oh, we don't believe you. You know, and it's Yeah, it wasn't, wasn't a nice experience.

 Gill Phillips  27:36

And I think that's extraordinary when you think of perhaps mental health or invisible conditions and trusting someone, believing them. But something as physical as you've had to be actually told that you weren't believed with that. And as well as the humiliation and obviously the human aspect , but the waste and the money and everything around doing a scan on someone to check what they're saying that that is shocking.

Rachel Jury  28:03

Yeah, I think also, throughout my experience, how that impacted me is I, when I go into hospital, I think people aren't gonna believe me. And yes, when I first became ill, and the organs were failing, it took a long time to get a diagnosis. And I eventually got a diagnosis of autonomic neuropathy. And during that time, people didn't believe me. And I didn't know why things were failing for me. And that impacted me throughout my whole journey. Because all the surgeries I've had, or the near death experiences, I've had, all the admissions I've had, there's an element in me that thinks nobody's going to believe me. And I've actually had to say, like, I am really septic. They like …  your blood tests shows you are, we don't, but because that whole not believing me, because I don't fit into a box it has impacted and I've had to really be aware of it. And I've had to do quite a lot of work on that. In that knowing that. Yes, people do believe you, you don't have to double question you don't have to show all the your thermometer, like take a picture of the thermometer and my temperature was really 41 It's like, we know, but because of that past experience that I had and that trauma I had I guess you know, through not being believed and being so ill, that then it plays out now.

 Gill Phillips  29:22

The damage that's done from those sort of conversations and you know, a lemon lightbulb there, it's just so obvious, isn't it but believe people and don't try and fit them into a box that you've learned at your medical school because there'll be exceptions that might be the majority of people fit into your box, but Rachel doesn't and no will other people. Yeah, yeah. Little acts of kindness. You've talked to me separately about little acts of kindness. And you had such lovely, lovely examples. Tell us one or two about those the special people the unsung heroes.

 Rachel Jury  29:55

Yeah, and the unsung heroes in the NHS. During my many admissions, I have a lot of love for the cleaners, the porters, the phlebotomist, the ones that you might not think are on a ward. And they have been the ones that have really given me the emotional support. You know, the nurses have been great. And the doctors have been great. But the healthcare assistants and other people on Awards’s ward have just really given me the emotional, the emotional support, really. And so I have one example, well a few examples. One example was when I had my bladder removed, I was about to get discharged. And after 10 days, and I was doing really well, and I caught C difficile in hospital on the ward. And that was just horrific. With an ileostomy, it is very dangerous. I was in for about four months, I was in isolation in a room. And it really, really impacted me not being outside and being so ill And he was a healthcare assistant and we had quite a bit of humour and a little bit banter. And he used to call me , because it's very smelly C difficile. Yeah, it's not a nice smell. And he used to call me Stinky Winky. And he used to bang the door of where my room is, and go, come on Stinky Winky, get out of bed. But that really helped me because I felt so I was just I was so ill, that kind of humour helped, like, give me a little bit of like, an injection. And it helped give me like a little bit of like life again. And I could, I don't know, feel like, have a bit of laughter like laughter was medicine. And he, he gave that and we had quite a good …. And I think of him very fondly now. And I can picture him. And during that admission as well, there was another nurse who always had her hair so plaited so nicely, and I always commented on her hair. And when when lunchtime she came into my room, and closed the door, sat down, and she started plaiting my hair. She said, I'm gonna put plaits in your hair. And I felt like a million dollars. Like I what what mattered to me during that whole admission and upset me the most wasn't that I had to be on TPN wasn't that I had …

 Gill Phillips  30:26

So what's TPN?

 Rachel Jury  30:39

Sorry, yep, total perineal nutrition. So I wasn't able to eat and I had to be fed through two PICC lines. So foodthrough a PICC line. And my other PICC line was for other things. And, and I had to, because my stoma had stopped working due to the C difficile and I just had that big surgery. I had to have TPN for a while.

 Gill Phillips  32:33

So that sounds huge. But it wasn't that that was the hugest thing it was,

 Rachel Jury  32:38

it was that I couldn't wash my hair. I was in a side room with no toilet. And I obviously I've got two PICC lines. It's hard anyway, but I couldn't wash my hair. And that was my that was the biggest thing that matters to me, that upset me the most. And this nurse knew that without me saying, and she came and she plaited my hair, and I, I was just so I was showing everybody. And then when the partner at the time came, I was showing him and my parents and I felt lighter. And I felt better. Even though I wasn't, just by a nurse, show me a bit of kindness and plaiting my hair. You know, and and it's sometimes it's the small things like Terri says, It's the it's the small things are the big things.

 Gill Phillips  33:19

It really is. And when you're on TPN then what happens as far as the tea trolley, do they come to you? Or how does that work?

 Rachel Jury  33:27

Yeah, they don't come as often, you know, they might come they might come for tea, but not really. But they won't come for lunchtime, and then I missed the interaction with the person that's running the food or the tea trolley, and you kind of become … my day then became really long. Because the food and like lunchtime and eating broke it up, it then became quite long. And it was that was quite hard. You know, quite an adjustment.

 Gill Phillips  33:54

Yeah, I think it's so easy, isn't it to focus on the medical, or the practical so a tea trolley comes around but oh, this person can't have it. But this person still needs the associated company. A little chat, seeing a human face. ...

 Rachel Jury  34:15

And I used to like it because the the nurses used to come nurses and healthcare assistants used to come in and close the door and just chat to me and and I felt like I was part of the team. Like because I was there for so long. I really felt kinda like I was I was part of it really and and I'm on that ward a lot every time I get urosepsis and they know me so well and I feel like I'm coming home now. It's like I don't need to explain my story so much because they know me. You know even if a doctor might not know me, the nurses can explain. This is Rachel’s situation because I am quite complex. But it's nice just going somewhere and being understood and it's lovely going back and doing volunteer work at the hospital and giving talks about co-production, you’re getting patients’ voices involved right at the beginning of innovation, not at the end. And working on that, it's great to be able to do a whole 360 degree that … when I was on that ward for four months, I saw a lot of changes that went on to that ward, that were good. Some were good, some weren't so good and some impacted patients. But nobody ever asked me, you know, if somebody has come around and said, Okay, you've been in for this long, because I was bored. I'm happy to do you know what, I want to talk to people? If somebody has said to me, okay, what have you seen? That's good? What do you think could improve? Hey, I always feel like I'm giving back and I’m actually being heard and I'm helping, but nobody did that. And sometimes when I do my talks to different people, I say, like, sometimes it's just doing basic things by asking people, you know, obviously being mindful that they may be so poorly, they might not be able to, but a lot of people want their experience to mean something.

 Gill Phillips  35:59

Yes, yeah, I think it's fantastic, Rachel, that you've got so involved in coproduction, I can feel that that's a real passion that's coming through and involving patient voice, I love that example of rather than it being a form as you leave hospital, to have that conversation, when it's appropriate, especially when you've got to know the person and that continuity that you've had, which sounds a really good aspect of the care, and not having to tell your story over and again to, to build on that relationship in terms of getting people's genuine feedback, the stuff that wouldn't make it into a complaint form. Again, the little things to feed back about that woman plaiting your hair, and it's obviously stuck with you, you know, I can feel after all this time, that it made such a difference. And another aspect is something that runs strongly through my work and through this podcasts series now. And I think you've got one or two good examples that I'd love you to share , around language and terminology, and how that can be, I suppose, ultimately, dangerous for patient safety if people are using different words, and they think they've explained things to patients in a way that they as medical people have understood, but perhaps you've heard something very different.

 Rachel Jury  37:15

Yes, Gill. So my example of terminology is actually the medical term for urostomy. And that is an ileal conduit. So when I got told I needed to have my bladder removed, I got told I needed an ileal conduit, which is quite hard to say. And also sounds really similar to an ileostomy, which I've got, which is where the faeces comes out into a bag and from the small intestine. So I went through my whole surgery, and afterwards, it was an ileal conduit. I wasn't told it was a urostomy, I might have been told about, it didn't really stick in my mind. All the nurses and healthcare assistants used to term ileal conduit. It wasn't till I got home and I needed to order my supplies was when I spoke to  somebody on the phone, the supplier and they said oh, it’s a urostomy., Well, urostomy, urine …urostomy makes a lot of sense, it's a lot easier to say, it is different to an ileostomy. And that seemed to stick in my mind. And patients use the term urostomy a lot more. So, urostomy is a term for an ileal conduit., but still, the healthcare professionals and the clinicians still use the term ileal conduit.. So as I was starting my blog, Rocking 2 stoma’s. And I found a community on Facebook and groups that I never knew existed. And I've met lots of people and I began to do some research and collate some data on our experiences around this. And so many of us have experience with going into hospital. And because we use the term urostomy and the healthcare professional, use the term ileal conduit. where we're not meeting in the middle, there's miscommunication, and actually it can be really detrimental. So because that was happening, not not knowing, then the patient might change and say ileal conduit., but sometimes they just might not not understand. So I collated this data, and we put it together, and it was quite it was quite shocking, actually, how many people have had this experience and it really led me to wanting to do more work with trying to deliver education, you know, primarily looking at students really, yes, it can be already people that are working as healthcare professionals, but actually students because when they're taught stoma sometimes they're not even taught about ileal conduits and urostomies and it goes back to adapting your vocabulary for the patient. And I did a talk at Eastbourne. It was for I think it was for a urology nurse and I gave a talk and there was a professor there, and he was really, really Instrumental. In, robotic cystectomy. And I can't remember exactly, but he was, he was really the top guy for it. And I gave my talk and I spoke about this terminology and how patients use the term urostomy , he came up to me afterwards. And he thanked me. And he said, You have made me now … in every consent form, I'm gonna put in brackets urostomy. And I thought, That's it. All I wanted was just one person to kind of take and I didn't ask him to do that. He just knew that it was right, what I was saying, the vocabulary that patients use adapt in your vocabulary to what patients know. Yes, it's a medical term ileal conduit. But I've had a lot of ostomates, like, message me and say, really confused speaking, they have an ileostomy? Because they've used a term ileal conduit. You know, and how do we go about getting that out more, and I bet there are lots of terminologies like that throughout the different conditions, where there can be a miscommunication, actually, let's change the vocabulary for what patients use. You know, when I call up an order, my stoma supplies, it's ileostomy or urostomy. It's really quick out of my mouth when you're poorly and you're ill and your septic, as a lot of patients who have urostomies are, can be because of the nature of, of urinary tract infections and kidney infections, you're going to use the terminology that comes to you, that you're natural with. So yeah, it's it's about changing that.

 Gill Phillips  41:30

Wow. Well, I think I can feel a little bit of a campaign coming on that might link all of this for you. So through your Fab Change day work, and perhaps a little campaign page, I don't know what there is at the moment, but specifically about language, and I can really help with that. And some of the examples I've got. So one of the workshops I do that I love the best really is a co production workshop with the Darzi fellows. And I'm deliberately a bit kind of provocative, and I can see there's an obstetrician in the group. And, you know, I might make a little anecdote about someone coming to the hospital for an IOL, because we've got a big thing about acronyms. And immediately and quite fairly, that person thinks it's an induction of labour. And I'm saying, well, that's funny, because it's a male, and he's going to the eye department. And it's an intra ocular lens. And some of these, you know, quite funny, hopefully, but some of them are dangerous. And we've unearthed some of the things that just by putting an abbreviated version could actually mean something different within the same department or the same service. And, you know, in our work, we use poems a lot. And so, I think you're editing at the moment, our ‘event in a tent’Poet’s  corner that we did, which thank you so much, Rachael, that was brilliant. And I was delighted that my good friend #FabObs Flo, so she's an obstetrician. By coincidence, I just gave that obstetrician example. But she wrote a lovely poem called ‘Reassured.’ And basically, again, a word that's probably learned in medical training, the patient was worried about such and such, the medical professional told them X Y, Z answer, which is the medical answer, but then to write in the notes, ‘reassured’…  Does the healthcare professional actually know that that person's reassured? Or did they go home saying, I’ve got no idea what she was on about? So I think anything like that, that cuts through and gets people those lemon light bulb moments, that that healthcare professional not only heard what you were saying, but also had the good grace and very positive, isn't it to feed that back to you? And tell you that from that point on, he will change his practice? That's huge. Yeah. So how to get that same message out to the other equivalent people.

 Rachel Jury  43:49

Yeah, it was massive and and what that did for me is, I then through Twitter found some connections where we did like a mini study. And we did a little study with a urologist in Exeter, and they helped me in Newcastle and we did it together. So another thing that also quite passionate about and I really would be excited to see the scope of is actually asking patients, what research, you know, experts by experience, asking them what research they would like to see in their experiences or conditions or medical appliances? Because I tell you what they I think there'll be some great ideas you know personally, for me, I know some of the subjects that I would like to be looked into. And I think if researchers and clinicians could actually go to the communities and go, What would you like us to see. There is an example I can give there where this has happened. So ACPGBI, which means the association of colo proctology of Great Britain and Ireland plg, the patient Liaison Group that's attached to that. They are brilliant, fantastic. And the work they're doing is awesome and they have stomas obviously, they have experience within that. And they actually went and produced a survey and they asked us, What is it the research that they want us to see? Well, their plg is like fantastic. I would love other specialist areas to adopt what they have done. And they actually went and asked us because they knew that the answer is in us, if they have access to our community, we've got the answers. It's just accessing us. So yeah, they asked us and then they're now doing research that is important to us. For example, I know this research that's happening about parastomal hernias, which can be a complication of having a stoma, and around exercise, and loads of different topics. And I was able to put some of my ideas, you know, my ideas, having two stomas, I created a Facebook group, Double Baggers for people with stomas . And I thought I was the only one in the world with two, and I'm really not. And now we've got, I think, nearly 800 members, and it's amazing. So in my Double Baggers stoma group, Facebook group, which is … I have other admins, and it's not mine, it's ours. And a lot of people in there have had total pelvic exenteration, for stage four cancer. So where the organs, the pelvic organs are all removed, everything's gone, you know, and sometimes things need to be sewn up. And there's a lot of people in that group talk about intimacy and sexual function after, you know, whether they're male or female. And it's something that hasn't really been tapped into. It's something that hasn't really been looked at. And there's a big need for it. So personally, I would like to see more research happen within the whole sexual function discussion, in particular, around patients that have had that surgery, because I think it's so it's so important. And I have a lot of messages, you know, and I try and say, please talk to your team. But really, there should be something in place where they go to see a counsellor where that is part of the surgery that they have that they can talk about, because it affects a lot of a lot of people say to me, they worry about their partners, you know, and they're just happy that this, that they were alive. But actually, it goes back to what I said, What matters to me. And what matters to the person is that that matters to them. So again, going back and asking the community, whatever area you're specialising, what would you like to see? We've got the answers, but we just need to be asked.

Gill Phillips  47:30

Yeah. And that runs through coproduction, doesn’t it?

 Rachel Jury  47:34

Definitely.

 Gill Phillips  47:35

I think that's just so exciting, Rachel, it sounds as if you've got so many ideas, but some of these ideas are actually happening. So you're able to quote the best examples of them. And then other people can look on and think, Well, what are we doing? Why aren't we doing that. And as you're talking, I'm hearing things like, you thought you were alone, and it must be a very lonely place. And then suddenly, you've got 800 members. So those 800 members might have all felt that they were the only person. So again, to form a community and bring people together with a shared issue and to be stronger together. That feels like quite a good place to to end up really, you know, our discussion? Was there anything else? I mean, it's just been such a brilliant conversation Rachel, I'm learning so much I just loving connecting with all these amazing people rocking it in their sphere and @Rocking2Stomas - what a brilliant Twitter name!

 Rachel Jury  48:31

And you know what, a nurse came up with that.  I was lying in bed and they said, Well, why don't you start a blog?And I said I wouldn't know the name and the nurse said Rocking2Stomas. I went “That's it. That's the name”. We’ll go with that”. And it's just got it. Do you know what? I would love it if the Wild Card podcast guests could all get to meet together Gill and have a bit of a party? I think we could have definitely network.

 Gill Phillips  48:54

Yeah, that would be fantastic, wouldn’t it, we’ll have a virtual, probably have to be virtual, virtual Wild Card podcast. party. Wow. Yeah, we're still gathering people at the moment. And yeah, no doubt you'll have one or two people. And I think Yvonne mentioned Victoria with ‘Get your belly out’ That would be, again, very relevant. I don't know whether she'd be interested. I think that she would. So this podcast series is growing. And it's thanks to people like you. Thank you so much for taking part and for everything that you've contributed today. Thank you, Gill. Thank you for for letting me share my story and other people's stories. It's been amazing. Thank you. I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favourite podcast platform. And please leave a review. I tweet as Whose Shoes. Thank you for being on this journey with me. And let's hope that together, we can make a difference.