21. Cristina Serrão - Lived Experience Ambassador

Today I am talking to #LadyLXA. Cristina Serrão,  host of Lemonade Radio,.

Cristina pushes the boundaries and uses lived experience to drive positive change.
Expect the unexpected from this energy-packed, inspirational podcast guest.

Cristina is in the Shaw Trust Power 100 and a fantastic role model, raising the profile of disabled people. Cristina  shares some of her personal  challenges, and some of the special people who have helped her along the way. Cristina has a very, how shall I say, colourful past, and she always adds colour wherever she goes.

She works as a  Lived Experience Ambassador. And when I say works, I really mean lives and breathes. Cristina brings people with lived experience together in order amplify the voices of others, especially those who might not otherwise have a voice. She helps people have fun and a better quality of life. 

Cristina is a real mover and shaker. She is  passionate about co-production and takes everyone with her. She is inclusive and human and makes me laugh, always pushing the boundaries and working towards positive change.

Lemon lightbulbs 🍋💡🍋

• Let’s build a world beyond stigma, where people are free to show vulnerability, speak out and connect as human beings
• Why does it take a life changing accident, serious disease or a global pandemic to see what matters in life?
• Listen to people with lived experience. 
• Some lived experiences are very hard to talk about
• Feeling alone and desperate. Talking about it can aid recovery
• When talking about lived experience, focus on relevance in terms of helping others
• You are very lucky if you can bring your whole self to work – and you do a much better job!
• The 'lived experience partners'. A movement, rather than trying to do things alone
• Our shared networks – how powerful they are – a network of networks
• Sharing lived experiences can help people relax and work together for positive change
• Working from home opens new opportunities for disabled people
• Let’s trust people!
• Have fun! Don’t take yourself too seriously
• Finding creative outlets can help mental health and recovery – Lemonade Radio helps Cristina sleep!
• Thank you to those who have believed in us! Special people
• We appreciate those who have gone before, ... and our partners who support our craziness
• Stay away from the energy vampires, the hoovers …
• Serious illness puts things in perspective. Life is short. Go with the flow!

And today, we have something superduper zesty. The launch of Lemonade Radio. lemonade.radio

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Connect with me - Gill Phillips - on LinkedIn, especially if you are interested in our brand new #CYPWhoseShoes resources or our well-established #MatExp (maternity experience) work.

I tweet (not so much these days!) as @WhoseShoes  and am on Instagram as @WhoseShoesUK and @WildCardWS.

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

Transcript

Gill Phillips  00:11

My name is Gill Phillips and I'm the creator of Whose Shoes a popular approach to co-production. I was named as an HSJ 100 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 healthcare, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you.

Gill Phillips  00:46

So who is today's podcast guest. We've been talking about doing a podcast together for ages. But then typically, the plan came together very spontaneously at the last minute, and this is very JFDI. For the last half hour, Cristina Serrao has been sending me links and zesty bits and lots of lemony ideas. It feels like peeling an onion, there are simply so many layers. Anyway, get ready for an energy-packed, inspirational podcast guest. Cristina is in the Shaw Trust Power 100 and a fantastic role model raising the profile of disabled people. Cristina might choose to share one or two of her own challenges, and the special people who have helped her along the way. She works as a lived experience ambassador. And when I say works, I really mean lives and breathes. Everything I see and hear about Cristina is about her bringing people with lived experience together in order to amplify the voices of others, especially those who might not otherwise have a voice. And also to help them have fun and a better quality of life. Cristina has a very, how shall I say, colourful past, and she always adds colour wherever she goes. I've been on quite a few collaborative online sessions with her recently, and you never know what to expect. She has appeared in enormous sunglasses, and last week showed us all a big basket of lemons that her mum packed in her suitcase in Madeira. With Cristina, there is never a dull moment, I found a comment that I wrote myself when nominating Cristina for a 'Hilarious Patient Leader Award'. So this is my quote. "Cristina is a real mover and shaker. She is really passionate about co-production and takes everyone with her. She is inclusive and human and makes me laugh, always pushing the boundaries and working towards positive change. And today, we have something super-duper zesty, I believe it's the launch of Lemonade Radio. So we definitely need to hear more about that. So welcome, Cristina, where should we start?

Cristina Serrao  02:55

I'm not even sure really, because actually, you've said where we're going to end up but wherever should we start? I'm not sure. How did I get here in the first place? Where are we now? So I suppose right now is, you know, you did mention what my current role is, and I can mention it is NHS England and Improvement. So you know, I'm the Lived Experience Ambassador, National Experience of Care team. But I'm also Cristina. And I think that's the most important thing that I always try and bring to everything I speak about is I'm somebody with physical mental health conditions, who has social care needs. And actually, you know, I'm not just tick box and, you know, I want people to recognise that, you know, our voices need to be amplified. And I think it's really tough to kind of like know where to start really, well if I go right back to 2012. I used to work for local authority and austerity, unfortunately I was made redundant so was my wife and we were both managers in the local authority Play Services and I think from then on it was get my health a bit more sorted and I had four operations. So I think my journey has been a bit of a roller coaster really. It all started from what falling off that wall back in 2003. Not a very high wall I'm only five foot two and I have to say the wall was only four foot, we went and measured it, but you know, landed badly, but maybe I landed on my feet. I'm not really sure. But without a doubt it changed me. It changed my life. And I was definitely burning a candle at both ends and in the middle. So for me, something had to make me stop and kind of think actually what are you doing with your life? I was an IT consultant back then in 2003. Working in the city, I was like basically partying all the time, and just that one accident and breaking my talus and lots of people don't realise where the talus is but it's the ... right in the core of your ankle. But I didn't just break it, I decided to break it in half, dislocate and smash the other quarter that rotated into pieces. So even my ankle has been a bit of a story of three operations later, but it stopped me and it made me recognise - did I want to work on multi-million pound projects or did I actually want to make a difference. And so that's what happened. I went back and gave back. I used to be a youth worker. And then I went back and started becoming an outreach worker. So my community work lasted probably, from what started as applying because I wanted to get into university really, from what happened then to actually going back into an area that was at one point statistically, was one of the most deprived areas of Western Europe, to actually working for NHS England, and it's been quite a journey, I must say.

Gill Phillips  05:31

That's amazing. I love it when I talk to people, because you only know so much about them. And already I'm finding out things, you know, bits that I've heard or variations of, but I didn't know about that big career and the big money. I guess, inevitably, I'm looking for finding that resonance with myself. So it was my own cancer experience, that probably just changed everything. It just makes you stop and think what's important to you. And is this really what I want to be doing.

Cristina Serrao  06:01

What matters to you. Exactly.

Gill Phillips  06:02

Yeah. What matters to you, is powerful. 

Cristina Serrao  06:06

Really powerful and I think at the time I was an IT consultant, I had private health care. And I was taken into a local hospital and asked, Did I want to go in the private ward? And I said, would it make a difference? They told me it was the same surgeon, only one surgeon was willing to touch me to operate. And actually what's strange was only last year, I was on a Teams call. And there she was, my surgeon after 17 years. And I hadn't seen her after she put me back together. So it was quite amazing. So my life, I do believe, it's you meet people for a reason, and you learn all the time. And so for me having that moment where I was actually, I'm not happy doing what I'm doing. I'm going to go back and I needed something that's flexible. And I didn't realise at the time that I'd end up with disabilities. And I was somebody who, as a youth worker, had set up the first Camden Disability Youth Forum. And when I was quite young, so I tell you a funny story. I took a group of disabled children across, we were meant to try and get to Guernsey, we never made it and I've never been so sick in my life. Oh I was so ill. Yeah, definitely love a boat, but only if I'm sunbathing. Oh, yeah, it was bad. But in Poole harbour at seven in the morning, I'm screaming because they've tied me off. They thought it was really funny. I was quite a bit fitter back then before I fell off that wall, I climbed up and I was yeah, I'll get it all sorted, you know. And yeah, the kids thought it was funny to encourage the staff to tie me off. And they tied me off in the middle of Poole harbour - screaming to get me down. I'm really scared of heights. So I think I always find myself in challenging situations. And I have to make myself laugh, because otherwise I'll cry. So I've worked with so many young people, people that were like between 13 and 19, up to 25, actually, who had really struggled all their lives with their disabilities. So for me to then find myself falling off that wall and being that person that then was in that situation of needing help, and not being able to walk for six months, I was just like, shocked, I'll never lie about being sick ever again, at work, because I'd been off sick. And I was like, never doing that again, because you never know what's gonna happen around the corner. So for me, it's like, you really don't know where your story's going until something changes. And I think, for me, I will always stop - I love chatting. But the thing is, I really love listening to people's stories. And I love hearing people's journeys and how they got there. And I will talk about it in a little while but why Lemonade Radio came about and why it's coming about and being launched on the sixth is because actually, we need to reconnect with people. And I think some of the work I've done during COVID has been amazing, but it's only been able to happen because we've been able to connect in a very different way, which made it accessible. I'm somebody who wasn't able to work full time for eight years. And I went full time during lockdown one, at the same time that my PTSD was triggered, and without the support and working in an environment and with people like yourself who just accept me for being a bit different and a bit of a joker in what was, you know, has been a really difficult two years, hasn't it, really? And I think coming to some of your sessions absolutely, absolutely set up ... if you see that photo anywhere, guys. For sure those big glasses. They're not something I'd walk down the street in, but they were definitely influenced by going to your sessions. Without a doubt you have to expect the unexpected. And I think it's just breaking down those barriers where people have forgotten to have fun, forgotten how to not take themselves so seriously, I think. 

Gill Phillips  09:28

Yeah, that's a heck of a lesson in life, isn't it? Just don't take yourself so seriously. Lighten up, be a bit more, I don't know, just more more relaxed. And I've found that with the workshops I run that as I get more relaxed and a bit more confident, then you can see other people get more relaxed and the sessions get more real.

Cristina Serrao  09:48

Absolutely, yeah.

Gill Phillips  09:49

It's just human beings coming together, isn't it? So I won't tell you, because this is about you not me, I won't tell you about how I worked at Calais Hoverport and dealt with parties like you, crossing the Channel …

Cristina Serrao  10:01

Yeah, you wouldn’t have got me on the hoverport, that's for sure. I would have been like feeling sick. Now we were on the lovely yacht. I'm sure it was amazing yacht, but I was absolutely petrified of being on. Yeah, it was a 70-foot yacht like amazing. No, absolutely love being near the sea. And you know, you mentioned Madeira. And that's where my family from. So for me, I think a lot of my work and it's remembering, you know, my mom's journey. And at the end of the day, my entry into this world wasn't that easy. Anyway, my mom had a really rare type of cancer leiomyosarcoma which basically, layman's terms is a fibroid that went cancerous which is very, very rare. So rare that I actually met the professor that was a doctor for 20 years. And he still called it the miracle lady. So she was probably at the time. Being in England about five years didn't speak English much. And if it wasn't for one nurse, one nurse that took time My mum always don't know her name, no idea is probably not here anymore . But one nurse took her time to just, in my mom's broken English work out, what my mom wanted to do. And it was in days of people not being told they had cancer. So my dad had obviously been told she had 6-12 weeks to live. And so, he is not man of many words, as it is he was very upset. Mom said he bought a bit of jewellery and she thought, something's up. So yeah, so basically that nurse, my mom pretty much said to her, you know, so if they can do and she said, there's an operation, but you'll probably die. My mum just turned around and said “I'm dying anyway.” So I think that kind of strength from my mum. And if I think back now, I was a young carer, I had no idea. It was just how life was. I translated, I didn't bunk off school, never needed to. It's that thing of, actually, I've got that awareness. And people hear me speak. And I was born in London, I've got a real London accent. And unless you get to know me don't really understand what my background is. And having been somebody who's been in that situation, and not even realising you don't realise how much it impacts the whole family, when there's diagnosis that I'm quite fortunate actually she did have cancer again, after 30 years, they were convinced it was going to be within 20 years. So they kept her on the books for 20 years, but she had breast cancer. But you know, she's still here at 79. You know, it's amazing. Fantastic. And actually, it's one of the reasons I am launching a radio on her birthday.

Gill Phillips  12:17

Oh, happy birthday. So that will be today. By the time we put this out. So yeah, happy birthday to Cristina's mom.

Cristina Serrao  12:23

So yes, for me, it's really important. It's a year since I last played, and going back to why playing the radio is just, it helped my PTSD, I have PTSD from an awful situation 20 years ago, that was triggered in Lockdown 1.  At the end of the day, that vulnerability and finding out I was in the shielded group was so hard. Without a doubt, it was so hard, I had no awareness, it was gonna impact me like that. And I just threw myself into work as much as I could, and connecting with people. And that's what's been amazing is the connections that have been made, those network of networks.

Gill Phillips  12:59

So we've got, we've got network of networks, we've got lemonade radio, we've got young carers, there's all sorts of topics and I could go off with any, because one of my favourite bits of Whose Shoes work I haven't done a lot, but I've done some and incredibly powerful and what you said there about young carers and young people, children at school, whatever, not seeing themselves not knowing that they're young carers. For me with teachers in my family. How many of those teachers know that they've got young carers in their classes, and perhaps when they haven't done their homework on time, or whatever it might be. So I've got some powerful poems. Sometimes it'd be another discussion, young carers, and then connections you and I, Cristina could do connections, I think our networks are such a big part of our lives.

Cristina Serrao  13:49

Yeah, absolutely. Trying to connect other people. And it's definitely part of my recovery. My anxiety and depression for when I was like, 16,17 probably stemmed from the situation at home, a lot of people think, Oh, was it because your sexuality? And like No, not at all, I had boyfriends? So for me, it was, I've always believed in you fall in love of whoever you fall in love with. And so, for me, when my parents found out, I was dating a girl, they threw me out. It was really difficult, not only today for me out, they denied they threw me out to this day. In fact, there was quite heated debate about only a matter of weeks ago. So people kind of block out some of the things they do in life, and you have to think hard, you move forward. And for me, it's not that I can forget, because I won't forget, I'm a bit like, an elephant like that. But I just kind of put my energy where there is good energy and move on because actually, you can spend so much time kind of wrapped up in that and of course, it still gets you on a bad day. But for me, it's what good can I do and if I can help other people who have been in similar situations, I always will. So I ended up leaving home. And what a lot of people don't know about I sometimes might mention on Twitter is actually I ended up in a really bad domestic violence situation. So I'm in social housing. Now, I've got no shame to admit, I'm in social housing, because I was given social housing because actually, somebody tried to kill me. And so that's somebody I was in a relationship. So for me, it's, you know, you have no idea what somebody has in their past, what lived experiences, and actually what it takes to talk about that lived experience. So I did say to you that, maybe I'll touch on some subjects, sometimes I won't. But you know, it's about relevance. And I think that's what comes out in my work that relevance, you know, not going to throw it all out in one go, because it doesn't help anybody, including whoever's listening to you. But what's really important is the relevance and how you can draw on your own lived experience in a safe way. And I would like to, but how I kind of learned to do that, really, and I've got to really thank a few people who saw something in me, certainly Cerdic over at the peer coaching service at Camden, Islington. He took me on as a peer coach, I hadn't worked for five and a half years. And we had clients, they were called clients, they're not service users. They all had a physical, mental health and social care needs. And I thought, okay, I can do this, I can do this. You know, I've been a youth worker, community worker. And I was like, Why am I being matched with some of these people? And I realise it's about connections. And we did a lot of motivational interviewing. And it was those connections that I made with people. And sometimes you'd have one lady, and hopefully she'll end up hearing this. And as a fan on radio, too, but she was so much older than me, who had breast cancer, who had chronic pain and lots of things going on for her. But somehow we connected and the best time ever was going to community, bingo, at a community lunch, because I was just like, I love eating, and community bingo. And it was just those connections, just being able to chat. And it turns out, she'd love to talk nearly as much as me. So it's great sessions, but it's just giving somebody a little bit of light, a little bit of relief from what their day to day is. And if I'd had me come into my home, as a peer coach, five and a half years before, maybe I'd have gone back to work sooner. Yeah, you know, I think it's the power of peer work. People need to be supported. And I think that's what's sometimes missing in some services is people don't recognise how much we give of ourselves, each and every day. You don't hide it away. It's the people know that you're in those kind of roles. But what's amazing is how much support, how much respect how much love I felt, and the people I've been working with, over the last two years, I think I've had people, clinicians managers come up to me and you know, virtually, obviously, but say to me about their own lived experience, but they're not in a situation where they can talk about it. And I feel like one day we'll get to a point where nobody hides away from with stigma, not of mental health, of very personal health conditions to people just don't want to feel like they're different. Don't feel like they're showing their weaknesses. It's not a weakness at all. Showing your vulnerability is not a weakness, without a doubt, but it's not easy.

Gill Phillips  18:06

It's not and I'm hoping, obviously that the podcast series will help with that. The kind of people that I'm talking to basically what they’ve got in common:  passionate people, interesting people, people who are making a difference. But everybody's got huge stories really, absolutely. Definitely Yvonne Newbold comes to mind. And Rachel Jury comes to mind as two of the previous podcasts , people who are literally taking something that is a taboo subject in Yvonne’s case, violent and challenging behaviour and children. And then, obviously, Rachel @Rocking2Stomas , and boys boy is she doing that! So I feel incredibly privileged to be able to do that. And it's funny, as you're talking, obviously people are coming to mind in my life. So you're talking about things come up, and they're relevant. And I would really like to give a shout out to Marcia, I'll just call her Marcia. She was my line manager when I had cancer. And really … I was off work for 16 months, and I'd lost confidence, big time and inevitably stuff happening at work. And she just took exactly the right line in terms of helping me get back to speed, and very quickly got back to speed. But that was just how it worked out. You know, that Day 1 back at work and having someone who believes in you, a Jamaican friend of mine, I'm still in touch with her and she's extraordinary. But if Marcia hadn't been there, who knows what would have happened to me?

Cristina Serrao  19:33

Well, mine was even more peculiar because my two people who spotted me really was my, basically my therapist for my PTSD. And my surgeon so I've got a sacral nerve modulator. So it's like a bladder pacemaker, because of my Ehlers Danlos Syndrome, and you know, I have bladder and bowel conditions. And so basically, my surgeon and it was because I asked really awkward questions, people say I'm a bit challenging. But she loved the fact I asked questions. And I probably asked some questions in an information day, because it was just humouring me. But she said it, I stood out in the crowd. And for that I'm forever grateful. Judy over at Camden and Islington and Miss Elneil wrote my references for my first job. And for me, that was a big step for a therapist and a surgeon that only knew me as a patient, a service user. To write a reference for me, were just like, wow, I hadn't worked for five and a half years and UCLH took me on as a Patient Director, I was Patient Director. And again, big shout out to Natasha Curran, and Lisa Anderton, who was my mentor, and when I was like, up and down like a yoyo, who interviewed me and got me into that role. So I think there are people that you can see who have helped along the way, and there's people that I'm still in touch with. And it's amazing, I think to myself, sometimes, how am I here? What am I doing? My mom thinks it's hilarious. Still can't work out what the hell I do. But yeah, they're just like, where are you talking? You're talking in Brazil? To who? So she just thinks it's really funny. But she's always said that there's one thing she'd never worried about is that I'll always find a way. Yeah, a friend once who said to me, they called me Cris. Oh, you know, where there's a will there's a way and where there's a way There's Cris. So it's very much true that I'm always looking for opportunities, it's probably because actually, my head's at 100 miles per hour. So I'm always multitasking in my own kind of way. But then when you land in a place where that energy and that kind of fun side isn't dampened, then you can just like blossom, and just really have fun. I've never been in the job really where actually I've enjoyed it so much. And it's because I'm really fortunate. I know, I'm really fortunate that I'm given a lot of freedom to go with the energy. And I think that helps, because it meant I found other people. And we just keep on growing. And it's a bit like, it's a movement, isn't it?

Gill Phillips  21:58

So that comes back to the network. So isn't it absolutely fantastic - networks, you're building, particularly, I suppose, this is what I see the lived experience partners, and what a incredible group of people you're pulling together, they're ...

Cristina Serrao  22:11

I'm gonna remind you, I keep telling you, this is what we're doing. 

Gill Phillips  22:14

Yeah.

Cristina Serrao  22:15

People bring people in. And it's us. And it's not just about me. And I'm really particular about that, because I think, having been in a role like Patient Director, where I found it quite isolating, and quite lonely, that I promised myself that I wouldn't go on this journey alone. So I used to have a really bad joke in the beginning, I'm gonna tell you it. So I'd say ... don't worry.

Gill Phillips  22:35

Beware listeners!

Cristina Serrao  22:38

So you know, when you climb the ladder, you know, you take people with you. And then I say yeah, because if you fall off the ladder, it's a softer landing. You can't say that. I've said it now, you know, so it's out there. But the reality is, I have amazing people that have been on this journey with me. For three years, people that I would love to see working right beside me one day, very much on the wage, in a team. That'd be amazing. I live in hope ... one day, so it's always about dreaming big. And things can happen. And every time I think, Is that really possible? and then something else amazing happens. So I can't believe they haven't kicked me out yet. But yeah, I sit on a fence, and there's no doubt about it. It's a very unusual role, because I am given a lot of freedom. 

Gill Phillips  23:24

Well, I'm really glad that you do dream big Cristina. And long may it continue. I guess the way I see it, what you do, and the good humour that you bring to it all is pulling people together, rather than apart, it is moving things forward. Otherwise, I dunno, it would just be lip service. And people can see straight through that. I'm glad you feel appreciated. And I guess it's central to this conversation, isn't it that when people feel appreciated and supported, they do a better job. But the last couple of years have just been so difficult for everyone.

Cristina Serrao  23:56

It's been an amazingly sad, amazingly fast couple of years, like where have the last few years been because actually, our whole lives has changed, haven't they? So, but would I have met so many people? I doubt it in that short time. Yeah. It's been extraordinary for that. You know, when I was having really a lot of panic attacks, I couldn't even make it to an appointment. It wasn't so much just because I was on crutches, it would be because I'd get to the front door and I'd just have panic attack and I couldn't leave. But you couldn't call up and just say like, I'm having a panic attack. Can you please change your appointment? It'd be like, DNA didn't, did not arrive and because you've been in too much of a state to actually ring through and I just think to myself, those people that are housebound, that whichever word we want to use today I was housebound, so that a lot of it when you're ... my anxiety kept me indoors. And so for me anytime I felt vulnerable, triggered lots of things in my life. So actually stuff actually we've been able to connect with people that aren't going out much those people that shielded group So for me, you know, lots of people talked about working from home and I'm like, I wanted to work from home, people wouldn't believe that you're working from home. You know, I worked in I.T. years ago, like I mentioned, we were doing remote working years ago, absolutely, years ago. And then it just seems that what's amazing is how much things have caught up. Society has accepted people work from home. But I find it still really sad. I find it sad that it's taken a pandemic, for people to realise there is a whole workforce or people with disabilities who could work from home. You know, there's a whole group of people who with additional support, reasonable adjustments, can give a really, really good impact on any work. And I think it's opened up opportunities, but I still find it little bit sad. It's taken a pandemic for people to realise, yeah.

Gill Phillips  25:49

And trusting people to work at home. And I think that comes back to one of the themes that's coming through on the podcast is around trust. And what you assume is, and this takes me back to my background in local government in social care, and like the roots of Whose Shoes really in terms of personalization and personal budgets, but could you trust people with this money? Could you trust them to actually make good decisions about how that money would help them, rather than 'we the managers who know what people need'? And it's that whole tension and trust and Rachel saying that she had to have a scan to actually be believed that she hadn't got a bladder, it had been removed.

Cristina Serrao  26:30

Yeah, I know. How can you not believe somebody with something like that. And I think it's, I think it's actually quite cruel to put somebody through a scan unnecessarily. So I've met Rachel, when I presented that Expo with Carol Munt . Got to have a shout for Carol, here ..., she's the original pirate, but Carol spotted me, she spotted me speaking at something. And I'll be honest with you, I blame Carol, blame Carol for everything. It's all her fault. I'm here. But what's really funny is we our birthdays are one day apart, so it's really quite amusing. So I'm like, Oh, I'm like mini Carol. So yeah, it's really funny. I have a lot of respect, I have a lot of respect for the people that came before me. Without a doubt. There are people that you know, I haven't always seen eye to eye with, don't necessarily agree with everything. 

Gill Phillips  27:20

Yeah, inevitably

Cristina Serrao  27:21

But I have utmost respect for the people that came before me and had to scream and shout. Miss Elneil, you know, when I came along, I think I said in my interview, as a Patient Director, I'm ready to sit down and talk. But I absolutely respect all the people before me. I will give out a shoutout to Alison Cameron. Without a doubt, that's how I spotted you. Gill because I saw your interaction with her on Twitter. And I thought, who is this lady though? Who's this Whose Shoes? And I think that's what ... when some people had forgotten how to be kind, you were always really kind. And that's what I spotted. I don't think I've ever told you that before. And I spotted that in you and I thought there's something here, you know, what, what is it? And so, for me, we're not always 100%, I'm not always 100% . You see the fun side of me, you see the side where I'm not in tears. But I've done so much crying in my life. I think that ... I'm still laughing every day that I'm able to be at work, that I'm having fun with it. And that nobody stopped my ... and I will say, crazy ideas because this lemonade radio is definitely ... my wife, bless her. She's just like, "do whatever you need to do". She's just like, it's a hobby for me. We're doing it all ourselves. We're not trying to raise any funds. It's just about connecting people and trying to do it on a budget and proving that can be done on a budget. So ... yes, so lemonade radio, which it was all about when the world gives you lemons, we'll give you lemonade radio and it without a doubt it's so gonna be so cheesy. I'm sure ...

Other  28:51

So, why didn't than anybody else tell me you about it. Apparently there's this new thing called Lemonade Radio . Check it out. w w w dot lemonade. Dot radio.

Cristina Serrao  29:04

Cuz you love lemons too. And I was like, Oh, wow, look, it's all about lemons. 

Gill Phillips  29:08

Yeah, we do do lemons, too!

Cristina Serrao  29:10

Yeah, so I think it's those connections. It those, you know, things that you can giggle about that just makes each day a little bit easier.

Gill Phillips  29:18

And the connections and I think there's a whole thing there around 'the other half', the long suffering  @MrWhoseShoes,  the people that are so important in terms of supporting us with these wacky and time-consuming, take over your lives... When I told him I was starting a podcast series. I think he thought it might take quite a bit of my time and it has done but you know, he's special. He supported me with it. And not to go on without mentioning Ally and sometimes the stories that sit behind things and some of it quite ... you couldn't plan it. So the Scottish connection that Alison Cameron had with my Mum and tweeting as @GillsMum, and sometimes they'd actually have a chat together. And my Mum suddenly became this Scottish person with a proper Scottish accent. And she wasn't putting it on, I promise you, she wasn't putting it on. Her parents were Scottish. She had grown up with a completely Scottish accent, went to school, and they laughed at her. So she turned it off. And that was the only accent I've known. But then suddenly she became ... comparing wee timorous, cowering beasties, or whatever it was with Alison. So some of these Twitter relationships, the connections, they're very special in all sorts of hidden ways, as well as the things that people actually see. But the timeliness, I think, you know, you were talking about your role now as lived experience ambassador and the people who've gone before you, I think that like the work that I do, you know, personal budgets, and so on ... change takes time, and there are people who've gone before you. And sometimes there's a timeliness in terms of when you come along, and perhaps like the next generation almost. But everybody has contributed and done their bit enormously.

Cristina Serrao  31:01

Absolutely. And for me, it's exhausting. Come on, I need more people to take over because I'm tired after just two years for like being full throttle. But you know, without a doubt, and I remember I remember contacting Alison, I'd never spoken to her before. And actually, we didn't actually speak for another two years, probably. But I messaged her and said, I found one of her videos really inspirational, because she talks about being homeless. And I hadn't really talked about being homeless, and that how I'd had no choice but to go back into domestic violence or live in my car. And so it was, it was them kind of connections that you just think, oh, and you do look back at your life. And you do think, you know, I'm 45 I'm not ashamed to say it. But I act like I'm much younger, because I love it. Why not? Yeah, why do you have to behave like, you're like at the end, it's just for me each day that I have still here. I'm very grateful for. I, you know, I've had a rough time. 20 something years ago, I might have not been here. So for me, it's, it's hard to talk about some of the things ... I won't go into too much. But you know, there are times where I felt like I had no one, even though I was surrounded by lots of people. I talked about it when I was on the radio last year about, you can feel so lonely when you're in a room full of people or even in a house full of people. And that's how I felt. That's why immediately I kind of tried to get some help and hadn't felt suicidal in so many years. And I had, you know, I did in lockdown one. And it was quite a shock. To me, I think and part of my recovery to talk about it. So as you know, a bit of a trigger for some people. But the reality is, it helps me and it helps me get by each day. And if I kept everything ... I talk so much, can you imagine if I kept it all in my head, and I didn't have an outlet. I would definitely be quite unwell, I reckon. So for me, the more I get out, the easier it is on me. And the better I sleep. And that comes back to the radio without a doubt. I had no idea that playing on a radio and having fun will sort of make the sleep better, you know, in lockdown one, I was sleeping one hour if I was lucky at night, because I just couldn't sleep it was, it was awful. So for me started playing, I was like, wow, I can sleep! People said how can you do this after work? I was like, Oh, I don't care if I still get four hours sleep, this is fantastic. So it's finding those things that help you and people, have hobbies, etc. Or what can I do when I'm at home because I don't want to get out there. And I'm still in the high risk group and I don't want to be out, unless I need to ... apart from going to watch Arsenal, I have to tell you that. So that's the only time and even that is very strategic, how I go in how I leave without passing many people. So I think, you know, what I'd love to see is many more people being able to talk about their experiences and connecting with each other, and not having that fear of speaking to each other and just learning a little bit more about each other as well.

Gill Phillips  33:54

I think you're bringing something that's just so real and the more people who do speak out or just chat really about their experiences, rather than necessarily a big deal presentation or something very formal. I think those are the things that can encourage others to I think. We find this at our workshops, that you get people wondering how it's gonna be and then somebody lets down their guard a bit and says what happened to them and then somebody else, and you can see the other people on the table. They're just strangers, often who just met each other. But immediately there's a bond there. People are prepared to share more and to realise that we're all kind of human together and that we can find a solution together rather than ... A big thing I think we've explored a lot with Whose Shoes is the Us and Them and the Us and Them can be the team next door. It can be ... the early work I did around care homes in particular, you know, like the care staff and the catering staff. And it doesn't make one lot the bad guys. But if you're doing personalised care, what does that actually mean ... in terms of regular mealtimes, actually being able to order the food in to know what people want and to give them choice. But perhaps you've got a farmer who's used to getting up at five in the morning, perhaps you've got a woman with dementia, or man with dementia who wants to wander into the kitchen and peel the carrots or whatever. Health and safety. That's really where Whose Shoes was born ... taking real examples and thinking, we all want this, in that case, home ...  people's home to be the best it can be. But what's the reality in terms of living there? working there? Or being a family member?

Cristina Serrao  35:35

But don't you think Gill, they are like buzzwords. So aren't they, because 'shared decision making'? I will be honest with you, from very early on, in my kind of long journey with my ankle, I've had three operations, it was always shared decision making about alternative types of treatments. I was a bit of a guinea pig. And yeah, I'm very well known in some places, because I screamed that clinic down. "But let's try it. It might work" you know, but had some quite radical interventions that kept me walking, thankfully. But for me, I looked back and I just think shared decision making, I was having those conversations because they weren't leaving that room until I got what I wanted to know. But I know ...  Not everyone could do that. My mom would go in and just be like, "Okay, thank you, doctor", and that'd be it. And it was like, whatever the doctor said, was what went, so for me, having somebody say to me, " have you worked out which ankle replacement you want?". And I'll be like, blah, blah, blah, (my statistics) and he said, "No, you're too mobile, you 'd wear it out in a year, and so yeah, but I learned things like I can't, if I fuse my ankle, I will never be able to have a replacement. Whereas if I wait for technology, potentially I could have a replacement. And then if it fails, I still have the option for a fusion. So it's those kind of things, those nuggets of information I would never have got had I not had those conversations with very open minded surgeons who just one, you know, knew I wasn't gonna leave until they kind of answered some questions, but actually took the time to explain things to me. Because be honest, like, just give me a new ankle. Everybody has new hip knees and hips, you know, why can't I have a new ankle? And there was just like, No, it doesn't work that way. So you know, if there's anybody out there, anyone who can give me a tailor made like 3d printed titanium one, I'm willing to be guinea pig, I always say. I found somebody, I think it was somebody in India, was having one done. And then somebody in America contacted me and was having one done. And I was like, I can only dream. But even so, you know, it was an unusual break, from having that broken ankle to not walking for that many months, to then the impact of medication on me and opioid medication as well, coming off those. And I just think to myself, if I look back at my journey, and if I'd known what I know now, I potentially wouldn't have gastritis or potentially, the anaemia that I've got. They're all ... some of them are like they're related to the medication over yours. But if I hadn't taken those medication, would I still be up and about as much as I am? So it's looking at what works for you. And I think for me, it's always been that, trying to find that combination of what helps me in my health, and just being able to put my hands up and say, You know what, today's a bad day. I've got arthritis, when it's cold. It's not great, you know. And so the reality is having that openness, where I'm really fortunate in my role, you know, I talked about my physical health, my mental health, which means it comes as no surprise to anyone. And like you mentioned onions, because there is multiple layers, but really, sometimes I even go, I forgot that happened to me. But I think what's important is how you connect to people and, you know, the real fuel the real fuel behind why I'm here and doing what I do is without a doubt, my best friend Diane, and you know, I probably saving this to the end because it won't make me cry. And I don't do crying quite publicly, but the reality is, Diane was my best friend for years. We met, we worked at Marks and Spencer, Marble Arch. That's where we met. I was 16. Very fresh faced, she was older. And I have no idea what ever drew us together because we were chalk and cheese, without a doubt, chalk and cheese. But she helped me from when I went to study abroad on Erasmus. She was the person that passed me an envelope and said, "Look, I'll help you out". And I just feel like those things, those people that give that step up, that reaching hands, take it and just see where it goes. So for me, it is about giving back in whichever way I can. And, yeah, I try and keep true and sometimes none of us are perfect always. So either. Don't annoy me because then you'll definitely know I have not got a poker face whatsoever. So, so far, I've been really fortunate that if it gets to those situations, I've got people that have bailed me out. 

Gill Phillips  39:39

Okay, so you won't believe what's going through my mind now. I guess when we do Whose Shoes workshops and people do their pledges, I've got this thing now that I pretty much guarantee, certainly in my mind, that I can add some value by linking them to somebody who's already doing it or somebody you know, within our enormous community and on Twitter and so on.  It's lonely trying to make positive change on your own. And it's fun when you link with others. And it's even more fun when you make proper friends and magic mates and so on. But as you were talking just then, I'm thinking, oh my goodness, wouldn't an amazing, just extraordinary outcome of a podcast with Cristina be find someone who can make you a 3D printed ankle

Cristina Serrao  40:20

(Laughter) yeah, I don't know. I'd probably chicken out of the op. "I was only kidding, only kidding. Don't listen to me". You know, you know, just aside from all the jokes and stuff, you know, I've got a lot of love for a lot of people. 

Gill Phillips  40:37

And me too. I have.

Cristina Serrao  40:40

And I think, I try and stay away from the negative because it's actually quite draining, it doesn't do me personally any good. And so I try and attract ..., you know, and you get drawn into it ... and I call them 'energy vampires', you know, they try and ...

Gill Phillips  40:53

I call them hoovers!

Cristina Serrao  40:53

Do you? So they're hoovers, yeah, energy vampires with their teeth heading for me. So eat a bit garlic and carry on moving on, because actually, I don't. I've been through too much to get sucked into all of that. I think I'm in a good place right now. I'm really fortunate that Kate's by my side and you know, we bicker like any other relationship but 15 years down the road. She hasn't walked away yet. So it's great. It's not easy being me. I'm not gonna lie. If you think it's exhausting listening to me, it's definitely exhausting being me. Trust me. So I think at times when people say to me "Oh, you need to take your break, realise how much all of this is part of my recovery and part of my keeping well, so it isn't just about fear of missing out but actually, I love it. And so for me, I'm going where the energy is and I always keep in my heart Diane, my best friend Diane Osborne and the fact I have responsibility you know, I inherited two, well they are young men now, they were 21. Tyrell and Kyle, I love them very much. And they are my boys now. So the fact that they you know, are high functioning autistic, I'm so proud that they went to university, one of them came out with a first, the other with a 2-1, one the year after their mom died. 10 years she was ill with kidney failure and dialysis and a failed transplant. And she always held her head up high and kept, you know, saying keep on going, she was always so proud of me. So for me, that's what's deep down. What's really deep down is not only giving back to the service that really helped my mum, when I was born. And I was born with a dent in my head. She said I thought, you were gonna be stupid. I was like, No, Mom, you can't say things like that. And I was like, Maybe I'm a bit like different, though. She's just like Hmmmm! You know, that's the translation, I won't tell you what she actually said in Portuguese. But I was born with a dent in my head, I've got birthmark on my face because I was hanging out with cancer for nine months. You know, if I can hang out with cancer for nine months in the womb, then you know, I can face anything, I reckon. So that's my philosophy on life now and seeing my best friend fight to get to the point where the boys were 21  - 10 years, you know - you've got to have fire in your belly to keep on going. When you can't, you know, you've just got to heal and keep on going after.

Gill Phillips  43:04

Yeah, this is just resonating so much with me ... my own cancer experience, the different attitude to life that I've had since then, in terms of ... I think I was always a bit of a 'life's too short for the rubbish' kind of person. But now I really am. And again, in terms of like going with the flow, and with developing Whose Shoes, I just want to connect with the people who want genuinely to make things happen. I steer away from meetings, I steer away from 'stuff'. I find ways of doing things that involve minimal stuff, and hopefully ... because apart from anything, it's more rewarding. It's more interesting for me ... We're giving quite a few shoutouts along the way. I don't know if you follow on Twitter, @SamMajumdar. He's a fantastic ear, nose and throat surgeon up in Scotland. And he's been ... we call ourselves like 'mutual mentors'

Cristina Serrao  43:56

That's great 

Gill Phillips  43:57

I helped him originally with getting going with social media and so on. But Sam's got such an incredible philosophy of life and like "Gill, just go with the flow" and just building on that in a more gentle way. A lovely gentle guy who 'what matters to you' in terms of what matters to his patients, way before that was a, you know, hashtag just like it's just how he is. So, okay, so I dipped in, quite randomly I think, the other night at midnight. I saw Cristina jumping up and down and asking if we wanted to tune into Lemonade Radio and Mr. Whose Shoes was sitting there, Colin, and I think you put 'Stairway to Heaven' on for him which he very much appreciated. So tell us a bit more. I think it's time to  tell us about Lemonade Radio and what's happening today, 6th of February.

Cristina Serrao  44:47

So I'm not gonna go into too much about the past but if you look at hashtag #LadyLXA, which stands for Lived Experience Ambassador, you'll get a bit of the history, but I wanted to wait respectfully for a year, to actually try and launch something myself also needed the funds to do it. So for me, prior to working for the NHS, I'd just gone bankrupt. So I've been bankrupt. So for me, I didn't even know if I could start a company, to be honest, so, just decided to, let's see what we can do and see where licencing etc, and it just ... it won't be a 24 hour station, because I still got a job, right? So I haven't convinced Kate to give up her art to, to like play all day. But the reality is, it's just a way of connecting. So, you know, when I was on the radio before, we did love talking, just connecting people and coproducing playlists and things like that. And it just became a bit of a game really, like, you know, somebody plays, I want this song for this person, a shout out, and then they will send me it and I'd be like the go between, and they go, "oh, this is what they're saying". And, and I just think it was just ... it broke it up a little bit. It broke up what was a very serious situation. And what I realised was it's just a bit of fun. And, you know, I'm not great, the whole technical bit, I'm still learning but from that, what we realised was the people that got in touch with me over the last year, when are you coming back on? And actually, not just about the energy, and I can get even more silly, especially if you give me a glass of wine on the radio, but I get even more silly, but the reality is ... there's no agenda. It isn't about, you know ... I just want to connect with people. And I'm really honest about it, my agenda is quite openly out there. It helps my sleep. You know, it helps me and my PTSD. It just puts my head somewhere else so that I'm not overthinking things. And I just love when it comes ... some songs, it takes me back and I'm like, wow, I forgot about this song. I don't even know this song. You know, my parents are Portuguese. Like, did they really listen to this stuff? I don't think so. So I don't know the words. So yeah, it's really quite funny and it gives me a chance also, to go back to my roots a bit because, you know, I'm very proud of being Madeiran. Medellin as we say, we are a Portuguese island. But the reality is, we're very different to mainland Portugal. And so if you don't know where Madeira is, it's where Ronaldo, the footballer's from, and we are just off north-west Africa. off the Moroccan coast, above the Canaries basically. And so it is a little island, it was one of the poorest, poorest places in Portugal, one of its poorest states. And so now it isn't, thankfully. My dad left, he left my mum, my sister was one month old, and he left to come to Jersey, in 1970. And, you know, they did 30 years here. And we said, you know, sell up and go home, you know, like, and it was like, Well, what's home? Make something and do something, you know, and that's what they did. And they've just celebrated 20 years. My dad told me when I was there a few weeks ago, that actually he thought he only had five to 10 years, you know, left in him because of his health. And he went out there and you know, 20 years later, I'm really quite fortunate that they're still here. So for me, they've always taught us to work hard. And if something's not working, just change it and do what you need to do to kind of survive because we come into this world alone, we leave this world alone. So I think it's really important to do what you can to help others while you're here.

Gill Phillips  48:03

Cristina, that was amazing. So if I want to plan my day today, then what do I need to do? When do I need to be around? is anything exciting happening?

Cristina Serrao  48:14

Absolutely. So today is my mum's birthday. Happy birthday Mum. Basically, today at 5 o'clock, I'll be launching Lemonade dot radio. So it's www.lemonade.radio. When you go on, just press listen. And you should be able to find it if you look on Twitter, you'll be able to find it all. J ust follow the lemons, if it's not through Whose Shoes, just follow the lemons, you're bound to find some tweets, but yeah, lemonade radio UK. You'll find me on there. And if there's any special requests, then please do let me know just send me a direct message and please yeah, follow along and let's see where we can go with this. It's just a bit of fun. And I just want people to reconnect and just you know, remember some good times so you know there'll be some funny shows. I'm planning the 'sweet and sour hour' which will be either like songs that somebody that you sweet on or for your ex that you're sour on. So yeah, I told you, it's gonna be Cheesy Squeezy. For sure. Yeah, and there's a few other ideas you know, lived experienced ladies, we're still working on that. But yeah, watch this space. I won't say more yet.

Gill Phillips  49:23

Enormous Good luck with it all. Cristina, you know, I'm not particularly into statistics, but I hope you get lots of listeners. And I know you've already got one very special statistic -  which is number of listeners bouncing on a waterbed -  one!

Cristina Serrao  49:35

That was so random, wasn't it? I was just like, I didn't even know she had a waterbed ... I won't name her, but I was really, I was like, wow,

Gill Phillips  49:44

So thank you for talking to me today, Cristina. It has been amazing and wishing you every success with Lemonade Radio!

Cristina Serrao  49:51

Thank you so much for having me. And really thank you for everything you're doing to make sure coproduction is still on everybody's lips. It's great working with. Thank you.

Other  50:01

What was that? Lemonade. On the radio? Oooooooh. w w w dot lemonade dot radio.

Gill Phillips  50:15

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 @WhoseShoes. Thank you for being on this journey with me. And let's hope that together we can make a difference.