We talk to Sarah, the founder of PEEPs on why she started PEEPS-HIE charity, what they offer, and introduce some of plans for PEEPS in a Podcast.
We talk to Sarah, the founder of PEEPs on why she started PEEPS-HIE charity, what they offer, and introduce some of plans for PEEPS in a Podcast.
Hello, welcome to Peeps in a podcast. I'm Andrea. I'm very excited to be kicking off the peeps in a podcast series as a cohost with Sarah, who is the charity Peeps founder, aren't you Sarah. We're both HIE mums Um, but we've both had a really different experience, haven't we?
Sarah:We have and yeah, it's so exciting. We've been thinking about the podcast for a while, talking about it for a while, and it's happening and it's, yeah, really exciting. So thank you.
Andrea:And I think, what are we trying to do, Sarah, with, with the podcast? I think everybody, like I said, we have lots of different experiences with h HIE and you wanted to create a podcast that can be somewhat of a support of all of the different families out there who've had this
Sarah:experience. Yeah, I think as, I guess as we've gone on over the years and as the charity's grown and we've reached more families, we want to try and do different things. Cuz you know, some people want to read information, some people want to listen to information, some people want to know lots of things. Other people don't want to know too much. And I guess it's just trying to offer a different way of, of sharing information and, and building a bit of a sense of community for, for people who have been touched by HIE
Andrea:yeah, absolutely. So the plan today is just for us to talk and us to find out a bit more about you and about Peeps. But in the future we're hoping to cover some topics bringing in some professionals and some other parents to talk about some of the things that are challenging and, and some of the ways that it can be easier to navigate this journey. When you've got a child who was born with HIE. One topic we were gonna start with in each of the sessions, we, we all know how hard it is to look after ourselves when we've got somebody else who needs a lot of looking after. So we talked about having a moment where we think about self-care and looking after ourselves. But that's not always easy, is it?
Sarah:No, I'm, I'm shocking. I know what people advise. I know what I'd say to other people. I know what encourage other people to do. But self-care for me, it is, it is difficult cuz like so many of us, there's lots going on and I think our, our needs sometimes get pushed down the list, don't we? And it, it gets harder and harder. So yeah, I'm, I'm not an expert. I'm looking forward to hearing suggestions in future podcasts about what we, we could be doing. I think one thing I'd started to initiate was my New Year's resolution. I didn't want to aim too high, but I'd I'd committed to read, starting to read. So I've never, oh, I've never been a big reader. I've always struggled to find time. There's always been something else going on. I thought, no, I'm gonna make it my mission to find half an hour a day, sometimes 15 minutes to read. And I've stuck to that every day. Since January. And I've just found even that short, short amount of time where, cuz sometimes if, if you do have time, you're either scrolling or you're searching or you're thinking of things and yeah. So that, that's my little bit of self-care. But it's still very much work in progress. Yeah,
Andrea:that's a great, that's a great tip. And I think the really small, little tiny habits that you can build can really help. But it is, Super frustrating, isn't it? When people are like, just have a bath. You know? Just look after yourself. Have a time.
Sarah:Yeah. Have a long soak, have a night away. Do this. It's like, yeah, that, that's all lovely. And those comments come from a really, you know, a, a place of caring and wanting to help them. I think sometimes in the real world it, it's harder to do that, isn't it?
Andrea:Yeah. So we just really encourage anybody listening, if you've got suggestions and ideas, send them in to us, write them in the comments and give us some feedback, because we'd love to share some of your tips of what's working for you as we go through. But today's all about learning about peeps and understanding finding out more about you, Sarah, and understanding what peeps do and, and how they can help. So. Just to ask you, I guess in, let's start at the beginning. What, what led to you, what's your story? What led to you starting peeps?
Sarah:So our, our reason I guess, is our daughter Heidi had a HIE event. She was born 2015, so she's, she's now eight. And it was a really straightforward pregnancy. There was no indication that anything would or could go wrong. And ours the more we talk to people, ours is slightly unusual in that. Heidi was fine when she was born, but she had a sudden unexpected postnatal collapse. So she collapsed while she was skin to skin and that was her HIE event. And I guess within minutes our world changed and I'm sure you know, lot, lots of families can relate to that. We haven't heard of HIE. We didn't know there were risks. Heidi was full term. I naively thought we are fine. This is all gonna be a doddle, you know, we'll kind of a few days in hospital and we'll we'll be home. And I'd also watched too many one born every minute. And I thought that babies who were born in distress needed a, a little bit of oxygen. And, and again, everything be rosey and our journey was very different. So Heidi needed lots of medical interventions. We were in neonatal for quite a few weeks, transitioned to children's unit, and then came home. And I think we weren't prepared for that. You know, she needed oxygen and suction and tube feeds. We've only got Heidi, so we didn't know anything about having a baby, let alone a baby with, with extra needs. And it was, it was terrifying. It, people didn't know what to do. Friends and family wanted to help, but didn't know how to help healthcare professionals outside of that neonatal. You know, we had health visitors who were, HIE, what, what, what is it? What does it mean? And I found cuz you Google and people say you shouldn't Google. And I did, you know, at three in the morning when you've not slept and I found a Facebook group, which was the HIE forum. And that, that was a massive lifeline for me because I suddenly found that I wasn't the only one. And people got it and people supported, which was amazing. And I think as time went on a little bit, I started to think about, well, what if I hadn't found it? What if I wasn't on Facebook? What if I didn't have access to social, you know, if I wasn't on social media and we wanted, I guess we wanted to, to try and change that a little bit and turn what was a really difficult situation for us. To try and take some positive from that and, and help people. I guess just that, yeah, you don't want anyone to feel as scared or as terrified as we did in elderly days. Mm-hmm. And we know we, we can't change the world and we can't take away lots of the hurt and the, the pain, but just trying to make a difference, I guess. So we, we thought there must already be a HIE charity because it happens, you know, it's not unheard of. And we didn't find one. So we looked to set one up. We were convinced that someone would go, why are you doing that? There's already one, and we still haven't found another one. So we're we still carrying on and the, the name came from when we were in neonatal, one of our friends called Heidi, Heidi- Peeps. And it stuck and we didn't. We wanted the charity to always have kind of a friendly feel. And yeah, that's, that's where Peeps came from, I guess.
Andrea:Yeah. I didn't ever know that you when you found the HIE forum that then, which is great cuz that's something that I was involved in and it's early days and so it's amazing to know that that helps. But there was a limit to how much, you know, a Facebook group can do. So I think it's amazing that. You know, I know in the early days of creating the forum we talked about what else can be out there, cuz we also found there was no charity. And I think it's but it's, it's a huge undertaking to start a charity. And, and of course everybody in our position, your position got lots of other things on. So you've done it and I think it's amazing. And I think that in terms of tell us a bit more about what, what you, what peeps actually do over and above kind of connecting everybody.
Sarah:Yeah, so we started off with parent packs, so I guess kind of comfort items and some information that go into neonatal unit. So that's, we're, we're a UK wide charity. Mm-hmm. So we were thinking we need to start somewhere. So, we'll, we'll try and reach families who might be at the very start of, of their HIE journey. So we started doing the packs. And as that grew, we started thinking, well actually for families who've got older children, we know that needs can vary massively, outcomes can vary massively. But we started talking to some families and realized that things like equipment can be really expensive or if you apply for things that are really long forms and that can be tiring and kind of a, a battle to, to try and get things. So we had some funds come in and we set up the equipment fund, so, We can purchase things like the firefly go to seat or the splashy or, or Seizure alarms, or different things. So we, we set up the equipment fund and then we realized the impact on mental health. Again, different ways at different times. So we wanted to be able to support families. We know how stretched the NHS is and people, they might go to a GP and be said, you know, told yeah, you would benefit from counseling, but the waiting list is really long. Mm-hmm. So we were able to then fund counseling and trauma sessions so we can support mental health. We have online information, we've got translations. We've started doing PEEPS Together, so everyone was locked away during covid and that had a massive impact on, on so many of us. So where we can, we want to bring that sense of community together. We do online sessions, we do a, an infant massage. Could, you know, I trekked a baby massage with Heidi. Because I was determined I was gonna go to baby class, and it was horrific because I just wasn't ready and it was too emotional and I was there doing suction and you know, it, it's hard, isnt it? So I guess it's about creating these safe spaces for people. People can dip in and out. What might be right for one person might be different for another person. And I guess trying to grow what we offer. Mm-hmm. To tie in with what families want. We, we can be really flexible and that, that's the nice thing about being a small charity. We can change what we do and, and try and get it as right as possible.
Andrea:Yeah, it's just fantastic. I love it. What it's probably a difficult question, but what, I guess what's made you most proud since you've started? This is an incredible undertaking. Have you got one particular thing or is that too tough? Must be a
Sarah:tough question. I don't know, because there is an element of, I still feel like we are winging it and we do, you know, we, we put the effort in, but I still think we, we've had a lot of luck and a lot of lovely support and, and that's huge. You know, it's, it's not, it's not just me. We, we've had a lot of support from, from different people. I think for me, what, what makes a difference is having one email or a text message or a phone call with a parent who's saying, we've made a difference. And it doesn't matter how big or small that is. If we've done a little bit of something, then yeah. That, that means the will to us because it's, it's huge, isn't
Andrea:it? Yeah, it's amazing. And I think there is so much warmth out there and desire to help when people realize because I think we, you know, I've, I've done some fundraising, I've been to a couple of fundraising events and you see people realizing and becoming aware. I know when it happened to us, we thought, oh, it must be really rare. This must be really rare. Yeah. We've never heard of it. And actually you start to realize it's really not that rare. And, and I think as you start to tell people that there's, there's, there is a lot of people out there that wanna help. So, and absolutely. It makes such a difference individually, doesn't it?
Sarah:Which is, yeah. And this, yeah. And the support's huge. You know, we. We try and support families, but we've had families who then support us and, you know, especially at a time where finances are so stretched and there's so many charities doing so many good things. Mm-hmm. And if someone donates a pound to us, or we've had people who might donate five pounds home, so it's not more, and it's like, no, that is, that's amazing. And yeah, it's, yeah, it's, it's lovely. So
Andrea:for anyone listening who feels like they might need some of your support or, or is interested in finding out how to access some of these opportunities and services that you are offering, what, what do they need to do in order to get in touch?
Sarah:Yeah, so we're, we're here for anybody touched by HIE, so that includes, You know, parents are the ones people think of. First of all, we've supported siblings, grandparents, the wider family and friends, healthcare professionals. So anybody, we would just encourage people to contact us however they feel comfort. So our details are on the website. We, people can email us, they can phone us, they can WhatsApp, whatever's convenient. We get lots of people who'll contact us, you know, in the early hours of the morning when people aren't sleeping and, and we'll come back to people as soon as we can. And yeah, just, we just encourage people. Sometimes it can feel a bit daunting to contact a, a charity or they might not feel it's for them, or they're taking support from someone else and everyone's really important. And if you feel like you would benefit from a little bit of help, then that's what we're here for.
Andrea:Fantastic. So we're coming to the end of the time that we were gonna do for this first podcast. I know we've got lots of other things we wanna cover in the future, and if anyone's got topics that they want us to cover, please get in touch cuz we are, we are really keen and excited to bring some other guests on next time, Sarah, aren't we? But what we, we are planning to hopefully finish every session. We talk about HIE heroes or HIEroes with the HIE at the beginning. And we wanna be able to try and celebrate each of our wonderful heroes week by week. So Sarah's gonna do it today talking about Heidi and, and, and celebrating Heidi. But for those of you who'd love us to celebrate one of your HIEroes, One of your little HIEroes, then please send in some information, maybe a voice note, perhaps an email. Tell us about your HIEro, and we'd love to celebrate them at the end of one of our future podcasts. So.
Sarah:Let's talk about Heidi. Yeah, so I'll, I'll keep it brief cuz clearly I could talk about Heidi all day, every day. She is, yeah. She's our absolute hero and it has been really warm here recently, like really toasty. And in previous years, Heidi's really struggled with her temperature and various things. And the last few days she's been a superstar. We've managed to regulate things better. She's been settled. She's blinking in response to things to give choices. So she Heidi's nonverbal. But she, she's been blinking more and more and we've, yeah, we've had some lovely smiles, which we waited a long time for. So yeah, it's, it's been lovely, amazing.
Andrea:Brilliant. Well listen, thanks Sarah. This has been really exciting actually, hasn't it, to get this done the first time. Hope it's been interesting to find out more about peeps for everyone who's listening and we are looking forward to bringing some other topics in the future as well. and getting some guests on, so thank you so much