Wild Card - Whose Shoes?

38. Sarah Land - founder of the Peeps H.I.E. Charity

October 09, 2022 Gill Phillips @WhoseShoes
Wild Card - Whose Shoes?
38. Sarah Land - founder of the Peeps H.I.E. Charity
Show Notes Transcript Chapter Markers

Today I’m talking to Sarah Land, another wonderful person who is using her own lived experience to help others.

Until a short time ago, I hadn’t heard about Sarah, who is the founder of the Peeps H.I.E. Charity.

Now I seem to be hearing about her everywhere I go. Such is the nature of networking. And, very rewarding in the context of my strong belief that these inspirational stories need a much wider audience!

Thank you, Rachel Crook, (Episode 34) for introducing me to Sarah and to everyone driving positive change for young families.

Lemon lightbulbs 🍋💡🍋

  • Sarah Land’s lived experience made her HIGHLY qualified to set up the Peeps H.I.E charity
  • HIE - Hypoxic Ischemic Encephalopathy- what is it?
  • Lived experience needs to be properly valued
  • Healthcare professionals and parents need to work TOGETHER (the new professional panel will build on the successful parent panel
  • Peer support is very important
  • Each family’s experience is different - care needs to be personalised
  • Some parents will be desperate to go home after a stay in neonatal unit; others will be terrified
  • Going home with a new baby is tough at the test of times
  • Parents can contact the charity when the time is right for them
  • We need to ensure good work that relies strongly on individuals is sustainable
  • Networking is strong – there are strong links to our Whose Shoes #FICare project
  • The power of Twitter! Connect and join forces with other people with similar passions
  • Getting the balance right - Family Integrated Care is the goal but make sure there is always proper support
  • Prepare for going home, feeling empowered rather than under pressure
  • Think differently – focus on improving lives rather than just measuring 'bed days' and financial outcomes
  • Whose Shoes thinking - bring in more humanity!
  • People need to feel free to laugh and enjoy life, even when things are difficult
  • Listen to people and see them as individuals
  • Let’s raise awareness of H.I.E! 

Links and resources

Find out more about: Peeps H.I.E charity 

Episode 13: Yvonne Newbold MBE – founder of Newbold Hope

Episode 34: Rachel Crook: caring for little ones, as a mum and a nurse!

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Gill Phillips  00:10

My name is Gill Phillips and I'm the creator of Whose Shoes, a popular approach to coproduction. 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 health care, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes wildcard is for you.

 Gill Phillips  00:46

Hello, and welcome to another episode of The Wild Card Whose Shoes podcast. Today I'm talking to Sarah Land, another wonderful person who is using her own lived experience to help others. Until a short time ago, I have to admit that I hadn't heard about Sarah, who is the founder of the Peeps HIE charity. And now I seem to be hearing about it everywhere I go, such is the nature of networking, and very rewarding in the context of my strong belief that these inspirational stories need a much wider audience. It was Rachel Crook, a previous podcast guest, who first told me about Sarah. And so far, we've just had a short chat to get to know each other a little bit more. I can't wait to find out more today about the amazing work that Sarah is doing. I'll leave it to you, Sarah, to tell our listeners more about your charity, how it all came about, and what you'd like them to take away from today's conversation. Where should we start?

 Sarah Land  01:50

Thank you. That's quite an introduction. So yeah, I'm Sarah, I think I'm now mainly known as Heidi's mum. So I'm going to share a bit about Heidi. And I think it's great, you are seen as more out there. So some people might feel familiar with Heidi already. She's seven years old. She's our only child born in March 2015, on Mother's Day after a really straightforward pregnancy. And for first half an hour, things were absolutely amazing. And then took a really dramatic turn is kind of an understatement. And she collapsed while she was having skin to skin time. And that was the cause of her HIE event. So she went without oxygen. She had to be resuscitated. The room was full of people. And yeah, it's strange, it kind of feels like it was a blur. But it also feels really clear as well as I was watching it happen to someone else. And that was really the start of our HIE journey. And we didn't know it was a thing. We hadn't heard about it. Naively, I thought, because I'd got to full term in pregnancy, that everything was absolutely fine. I didn't realise that such things could happen. And she had to be transferred to a different neonatal unit where she was cooled. So we couldn't hold her for three days. We had an amazing team, the nurses, the consultants , were all brilliant, but clearly it was a really difficult time for all of us. And we felt really, really lost. We didn't feel like we fitted in, she was a 9lbs 7 baby in a room full of very premature babies, our families and friends hadn’t heard of HIE. We didn't really know what we were saying to people when we were saying that Heidi was poorly. People were thinking, Oh, rachel, she'll have a few days in hospital and then she'll be fine. But Heidi, ended up with a really severe brain injury. She was having seizures, she was on oxygen. She was fully tube fed. And she was a bit of a mystery, really. And we still say now she writes her own rules because lots of babies like Heidi will have complications with organs and Heidi’s body was fine. But her brain wasn't really, I guess, is the simplest way of putting it. And people didn't know what to tell us. They just said we needed to wait and see. And that was the hardest thing. And we know that for lots of other families. That is the hardest thing the wait and see it's kind of well, what are we waiting for? What are we planning for and trying to adjust .to? That as well as adjusting to having a baby because we didn't know what to do? And yeah, we had eight weeks in hospital, transferred back to our local unit. Started to do more and more cares for Heidi, getting involved with looking after and learning how to do things, which I was reluctant to at first, I'll be honest, because it terrified me. Because I've got no medical background, I didn't want to touch the wires or the tubes, or I was just so frightened of doing something wrong. But we were encouraged to get involved and gradually our confidence built. And it was while we were in hospital, that I Googled HIV, which I think people say you should never do, because Google can be a frightening place. And I found a Facebook group just for our parents. And I think that was a real lifeline for me, because I virtually met families who got it and, and understood what we were going through and offered advice. And there was always someone even if you were online at two in the morning, when you couldn't sleep, there was someone there to kind of give reassurance and make us feel like we weren't on our own. And I guess as time went on, we thought, Well, we, you know, life settled down for us, Heidi had and still has complex needs. But things settled for us. And we just thought, well, what if we hadn't found that group? What if people don't have Facebook? What if people aren't able to look for things? Where did they get the support from? And that's ultimately why we looked to set up the charity, if there's like a really long answer to the question. But yeah, that's why we wanted to do something because it's just such a difficult situation. And families are going through this so much, and it just wasn't talked about. And we had to look for help. And we wanted just to make it a little bit easier for families to get that help. So we set up Peeps,

Gill Phillips  06:43

And I'm so glad you did, or and it sounds a wonderful charity and I think anything that takes your own situation as you've done and, that fear and that unknown, as you've described it so vividly. And recognises that there will be other people who sadly go through exactly the same, what is it that you struggled with and what helped you, and to try and turn that into something? Well, not just try, but you've achieved, to turn it into something so amazing. And that's why I want people like you Sarah on the podcast, because it's just awesome. And the lemon light bulbs that I've got just listening to you. The fact that you had that first half hour, as a mum, you thought things were okay, at that point. And then the way you describe with a large baby, really on the neonatal unit and how different and odd that must have felt and all those different people in the neonatal unit, none of them choosing to be there, and all the different experiences that people have, and then for the staff to know how best to help each family. And then to know about things like your wonderful charity so that people get to hear about that as soon as they possibly can rather than having to Google and discover and perhaps say I wish I'd known about that. So many different aspects and different directions that this conversation could go in.

Sarah Land  08:10

yeah, thank you. It is strange, because I still feel like someone's going to say, what do you think you're doing? You're not qualified to run this charity or to do it? I think lots of us have spoken about that, you know, kind of the imposter syndrome. And we know, we haven't got that magic wand. We can't take away all the hurt for families. We can't stop things happening. But we yeah, we do try and base everything we do around kindness and what would have helped us and sometimes just hearing another mum or dad saying yeah, I get it, you know, we we know that the really medical teams doing all the necessary things to look after our babies. And you know, I massively appreciated that. And I think you always end up with kind of your favourite nurses are the ones that you you build bonds so quickly with them while you're in hospital. And I know we hear lots of families who are saying, you know, they are desperate to get home. But I was completely the opposite. I didn't want to ever leave neonatal because I felt so safe, and so looked after. And I knew that Heidi was really well looked after. So for me the most daunting, I guess transition was when Heidi was stable enough to come home. That was the bit where I really struggled. With the charity now, we're finding … I guess I thought, oh, people might not contact us really early on. It might be too soon where there's so many things going on. You don't know what the next day is going to bring you frightened about the future. I thought people won't be reaching out to us. But we found that some people are even in those early days. Families are contacting us because they're just so frightened. They're looking for answers. They're looking for reassurance. But other families, it is too soon. And it might be when they get home or six months down the line or coming up to a first birthday or an anniversary. And that's one thing that we kind of try and encourage is to say, you know, where possible give families the choice. If they have the information, they might use it, or it might go in a drawer, but it's there at some point, if they ever need it. So yeah, it's just letting people know that we are there if or when really.

 Gill Phillips  10:30

And I think that reinforces everything that you've said, just how individual things are. And even what you said earlier about, people assume that going home, you'll be delighted, but actually, for you, because Heidi, you felt she was so safe, and you were safe, and you've got that support. And that network, it can be very lonely at home, can't it?

Sarah Land  10:51

Yeah, and it's terrifying, because we've only got Heidi, but I can imagine that going home with your first baby anyway, is is a big deal. And you know, there's so much responsibility. But Heidi still needed a lot of suction. She's tube fed, she needed medication. We were … me and, Steve, took it in two hour shifts, because you need 24/7 care. So we kind of had to figure out our way of doing everything. And there's no handbook, no one was telling us what to do. And you always question yourself, I think it's human nature, isn't it to think I should be doing more or I should be doing something differently. And it took quite a few months for us to really, I guess just find our feet. But no one was there to say, Yeah, you're doing a really good job or hang on in there, or it gets better. And I think that's why we were looking to other families who were that bit further on in the journey, because they know how difficult those those early weeks and months can be.

 Gill Phillips  11:54

And that's the power of peer support, isn't it? I mean, I know, it jumped out at me when you said, Who are you? Are you qualified, that word qualified to run this charity, but I couldn't think of anybody more qualified than a parent who's actually gone through exactly, you know, who's lived and breathed 24/7, you know, the love and the new baby and all the kind of parental things as opposed to the professional medical things. And it's how the two come together to support each other isn't it, rather than who's qualified and who isn't? Because it's a different type of qualification.

 Sarah Land  12:28

Definitely. And like I said, the teams are fantastic in the hospitals, you know, we were so well looked after. But it's a different need, I think that you can't have you know, it's not one or the other, it's, it's both of them. Because lived experience is different. But I’m also really mindful that my experience is going to be very different to somebody else's. And, you know, it is going to affect everybody in different ways or at different times. And I guess what we try and do is offer support that suits that family, and that could be different for everybody. That, you know, there isn't the one size fits all, but it's listening to people and I feel like we're in a really fortunate position at the minute we are, we're okay when we can do this. But I'm very mindful, that might not always be the case, you know, and it's, it's just been in a good place at the moment, and I guess looking out for each other.

 Gill Phillips  13:28

And that comes into all sorts of things, you know, in terms if you're doing amazing, good work, but then it becomes about one person and how to make it sustainable. And I suppose this is what I'm trying to do through Whose Shoes and through the podcast perhaps to link people. It can be lonely, being a parent in your situation, but you've built a network to help that. But it can also be lonely, perhaps being the founder of a charity and how do you develop it? How do you build it? What do you do with this situation or that situation? So perhaps, I don't know whether you are linked with Yvonne Newbold, and I've mentioned Yvonne Newbold before. And, I mean, again, the links through Facebook, so she became part of the Facebook community accelerator programme, and getting support from Facebook to recognise the fact that she's got a network of I think about 10,000 families now, you know, how did she build that? But also, how is she going to make it sustainable for the future? And I think with all of us, I mean, it's the same with me with Whose Shoes you know, if you've got something small but quite powerful, to try and look to the future and make it so that it goes on, with or without you, you know, rather than all being about you, and it's hard, isn't it?

 Sarah Land  14:43

Yes, it really is, I think it's strange when something starts as an idea. So for us, we just thought, you know, we were surprised that there wasn't HIE charities in our case. So we thought we'd try it and we weren't sure if it would work and then it grows a little bit, and then it grows a little bit more. And then before you realise, you kind of think, oh, gosh, we now have got a charity. And people are contacting us. And I just think there's a world that we didn't know about. But there's so many good people doing wonderful things. And I guess tapping into that, and joining forces and sharing things is is huge, isn't it? And yeah, I think from our conversation last time, I'm quickly kind of googling people and following people, have you ever been and it just, it amazes me? Because I just think, yeah, it's that lived experience and sharing and growing. And when you look at a lot of charities, that's how they started.

 Gill Phillips  15:40

So I'll tell you what happened to me last Friday. So this is what, three, four days ago as we're recording the podcast. So I was very privileged and got invited by Katie, Cullum. And I can see you nodding, 

 Gill Phillips  15:54

And you didn't know I knew Katie. And I didn’t know she knew you. And Katie and I went along. And she has been part of a communities of practice leadership scheme. And it was a kind of end, of course, celebration, bash, which was wonderful. And linked to the Q community, which I'm part of, and the family integrated care project that I'm just starting with Katie so you could feel all these networks coming together. And each of the people who've been on the course, had made a little poster. So I went obviously and looked at Katie's poster. And there she was talking about charity, and you and the work that she's done around transition. And I'm thinking, Oh, my goodness. So I say to Katie, well, actually, I'm due to be recording a podcast with Sarah. And it was Rachel Crook, who introduced us , and now Rachel's just become part of your professional panel. So you might like to tell us a little bit more about your parents panel, perhaps and the professional panel. But this networking is extraordinary. And obviously a question in my mind is how this all feeds into our new family integrated care project, trying to bring these experiences into neonatal care, and make sure that families are in an appropriate way, in the centre of the care for their baby and able to go home, hopefully, without being too terrified, even though, as you say most parents are terrified taking their baby home anyway. I know I was. So yeah, Katie. And Rachel.

 Sarah Land  15:55

Yeah, that's wonderful. And yeah, I didn't realise Katie was doing that. But, again, I've been involved. I've been fortunate to be asked to be involved in different projects. And we've virtually met people, it's a shame we, you know, we're not in the same location to meet face to face, but you just hear the work that's going on and what people are trying to do and yeah, it's, it's wonderful. But yeah, our professional panel. So yeah, Rachel is on that we've got our first meeting this week, which is really exciting for us. Last year, we set up a parent panel … I've got my experience with HIE, we know that's going to be very different to other people's, and we wanted a, I guess a better way of trying to represent all parent voices. And make sure that what we're doing is the most appropriate thing. It's what families want. It's what makes a difference. So we set up the parent panel last year, and we've worked on things like reviewing our information leaflet that goes in our parent packs, for example, for neonatal units, because feedback was that people didn't want pictures in there of children, because sometimes that was either triggering or made you think about the future a bit too much. So we're really careful about not using pictures, we're really careful about not talking about diagnosis, you know, we're not medical, we're not trying to be medical. And we wanted it to have a friendly feel, so that it was just that reassurance for families. And we did that with our parents, which is huge, because we now know that the feedback that we're getting, it's doing what we wanted it to do. And we then thought, well, actually, all of these families who've been touched by HIE, are having different contacts with healthcare professionals and people in the community, depending on their needs, and you know, their outcomes. And we wanted to tap into people's expertise, people's knowledge, again, just to help us grow and shape what we're doing, but make sure we're doing things in the best possible way. So I'd wanted to do it for ages. As is always the way, just time was the factor that slowed things down, but we'd had a lovely response when we advertised it. So we've now got, I think we've got 12 people on our first professional panel, and that's a mixture of neonatal nurses, physiotherapists, people with a legal background. And we're all going to come together, working with the parent panel, and hopefully make sure that everybody's voices are heard, and that we are doing what families want us to do.

 Gill Phillips  17:36

Brilliant, exciting. So how this is for my just curiosity, really? Why Rachel, what's your link with Rachel?

Sarah Land  20:12

It was through, I think my memory is shocking. But I think Rachel had asked me, I'd been involved in one of the study days online, where we'd shared about what we were doing. And we'd shared a bit about our background and about the charity. And a lot of the contacts that we have are through Twitter, the power of Twitter is huge. And I remember the very, very first study day that I went to, that was when it was face to face. So pre COVID. And I remember one of the nurses saying, You need to get on Twitter, it's all about the hashtag. And I was thinking, Okay, well, we'll give it a go. Yeah, it is steadily growing from there, which is … yeah, it's such a good platform for, for reaching people. And for that networking, it's amazing.

 Gill Phillips  20:59

And I find that too. I mean, of all the social media platforms, it's Twitter that I've used to connect, build what I do, learn, research. And you know, Twitter's got a dark side as well. But people sometimes only see a difficult side of social media. But my goodness, it's phenomenal, isn't it, if you use it well, I think and connect with good people,

 Sarah Land  21:23

Definitely. And so the likes of Rachel, because we've had contacts before. And when we first had a call, I was really pleased when she showed an interest in being on the panel, her experience is vast. And then when you talk to people, it's a sense of, you know people, even though we've never met, it's, it's yeah, it's just really nice and having the opportunity to actually work together. And we're all in it for the same reasons, we want to improve things for people.

 Gill Phillips  21:54

And for me, there are two almost equal threads in terms of my work at the moment in terms of how, I can see that this link with you and your charity, and the parents and so on. So, Rachel, works at a Midlands trust, where we're starting to do some Whose Shoes work around children and families and supporting parents and looking at and all sorts of different aspects. So general patient experience through to quite specific issues. And Rachel has come through as a star of that already, almost before we've got started. And I can't wait to connect with her more. And you just need that kind of like bubbly enthusiasm, don't you and that deep caring, so that's fantastic. And then separately, the more digitally based project that we're doing with Katie and a network from really across the country, around using Whose Shoes to get people thinking more about what family integrated care really means, in the context of a neonatal unit. And to try and, you know, like you're doing really, with your professional panel and your parents panel, to try and look beyond the medical, and to look at the different experiences and to perhaps, you know, just challenge in terms of different families experience. So I've already heard your experience of having a full term baby on the neonatal unit, alongside the other people there. What if perhaps you're a disabled parent? Or what if perhaps you're a very young parent or … so we're going to be trying to think widely and bring all those voices in. So that, you know, sometimes you can think in quite a set way about what that journey might be. And you'd know more than anybody, just how individual it all is.

Sarah Land  23:44

It really is. And I was speaking to someone the other day about the family integrated care side of things. And, you know, people are being encouraged to do the cares, and how, you know, have that involvement really early on, which is brilliant. But it was actually understanding as well that not everybody wants that.

 Gill Phillips  24:05

Yes.

 Sarah Land  24:06

And sometimes there are ,,,, I know I certainly was , there are massive fears. And, I used to avoid doing Heidi's nappy because I was terrified. So I would always say to Steve, Oh, will you do it this time? Because I just didn't want to. I'd be relieved if I thought maybe a nurse would help.. So it's getting that balance, because I think it's such a positive thing for family integrated care and I totally, you know, totally support it. But the other side of it can be those fears and uncertainties. And sometimes you need that little bit of time to adjust to things,

 Gill Phillips  24:44

of course. And I think also from what people have said, just the sheer exhaustion and what you don't want is for it to shift so that you feel that you've got to do everything and you're less supportive with that. So it is, isn't it Some of these areas are so kind of nuanced, really, and that you don't want to flip from one side to the other. You want to kind of work together to see how it comes together and how it works for individuals and individual families.

Sarah Land  25:11

Yeah, definitely. And so I think it's a real positive. But it is that it's, yeah, you're right. It's that awareness and thinking people have different views, different experiences, different needs. And yet, you don't always know at the time because you're in this completely alien world. And it's a shock.

 Gill Phillips  25:31

Yeah. And would it be something .. I mean I find, sometimes, you know, working backwards can be quite good, like looking at the outcome. So probably for most families, it might be around going home in the best circumstances that you could, feeling as empowered or as confident or as whatever it might be. Might that be the kind of goal that then everybody could work back from in terms of, well, how does that work for this person or for that family? What do you think?

 Sarah Land  26:01

Yeah, I think that sounds good. I think it is that. Yeah. What does it look like for that family? Yeah. What are they wanting to achieve? Where do they want to get to? Because I think, you know, from families we speak to, there is a lot of pressure about getting to go home, or milestones or various things. And if you look at it a whole that can feel really overwhelming. Yeah. And I think just, yeah, it's the small steps, it's getting there and heading in the right direction, even if it doesn't always feel as quick as you'd like to.

 Gill Phillips  26:36

And interestingly, that links with … I've just this morning, had a conversation and involving Katie Cullum, talking to a couple of fantastic neonatologists, and we were talking to them about our family integrated care project. And we got into a conversation about just getting people to think differently, and they were championing music therapy, which I think is wonderful. And then like the different mindsets, in terms of you know, if the financial people turn around and say, well, in what way does that save the hospital money?

Sarah Land  27:07

Yeah, yep.

 Gill Phillips  27:10

And then, you know, just these different, I suppose, this is what, Whose Shoes tries to do …bringing these different, very different perspectives together? And actually, that you can't necessarily quantify today the bed days or that that baby will definitely be discharged X days earlier … you've got to perhaps be a bit more imaginative in terms of human beings. But also I would argue strongly that I've got zero … you know, I'm not someone who can quote research papers all over the place, but if you get a family going home feeling bonded with their baby, empowered, happier than they would have been, supported, then probably in the longer term that will save some money along the road somewhere.

 Sarah Land  27:52

Yeah and it is the right thing isn't it? T

Gill Phillips  27:56

Of course  

 Sarah Land  27:58

I get that there's got to be measures but you kind of think … what's the right thing? Or what's the best thing and you know, we're very much about its quality as well, isn't it? Right, you know, if people want to get home but it's doing it in the right way and having been able to enjoy some things … because the bit I struggled with when we were in neonatal was kind of having conflicting emotions. So the odd time that say, something happened that we found funny, and I laughed, I then had this overwhelming sense of: I shouldn't be laughing, we're in a really difficult situation. And it's understanding that actually you can find enjoyment in some things and you know, things like music therapy, it's it's such a lovely thing. It's important, you know, that I get that there's research around the the impacts on the babies and the families, but it feels like a nice thing. In a world of very medicalised things, if that makes sense.

 Gill Phillips  28:58

It so does! I mean perhaps the measure should be, if you look around and perhaps people are smiling more than they would have been without someone playing a lovely bit of music or whatever. But it doesn't have to be, you know, put on your Excel spreadsheet and measurable in that sense. One of my hobby horses. So Sara, I've realised we've had such an amazing conversation, but we haven't actually said what HIE stands for. And I mean, obviously in the interest of not just using an acronym, although I'm sure people will have understood, do you want to tell us a little bit more about that?

Sarah Land  29:35

So it stands for, and I've still got to think about this, Hypoxic Ischemic Encephalopathy, which, in basic terms is a lack of oxygen to the brain. It usually happens just before or during labour, but it can happen after as well, like it did with Heidi. And it can happen in older children too. So yeah, it's a lack of oxygen that can cause injury.

Gill Phillips  30:01

So thanks very much for explaining that Sarah, because obviously, it's important, but far more important these conversations and to help people understand the effect on families, and what we can all do to support. So the time has flown. And I know you've got to go and collect Heidi, which is the most important thing of all. But this feels like an amazing conversation, Sarah , and I'm really hoping that people will listen to this, because I think we've explored various ways of perhaps encouraging people to think more widely and think what it's really like for individuals, families, and so on. So to finish, perhaps I can ask you, what kinds of things would you like to see happen from here, Sarah? And how perhaps could our Whose Shoes projects that I've mentioned, be helping with that?

Sarah Land  30:45

I think, I think for me, it's about listening to the different parent voices and understanding people have different feelings and different needs. And sometimes I guess, people might not be able to express them. Whether that's because of how they're feeling, you know, the place that they're in, or language barriers or anything like that. And it is trying to really get to the root of what is the best thing for that family and trying to, I guess, have an individual approach. Thinking about the language that people use is massive, and realising the impact that people can have, you know, one small comment, seemingly small comment can have such a positive impact on people. And that might be the one thing that they hold on to that day or that night. And I think, you know, people want the best, and people can really make a difference. And yeah, just if we can help support anybody, we also get that HIE events can be difficult for the professionals that are involved. We totally understand that. And we yeah, we are here to support in any way we can and we are open to ideas. So yeah, please get in touch.

Gill Phillips  31:56

Well, thank you so much, Sarah, for talking to me today. And obviously, I'll share a link to the charity in the podcast notes. And we'll ask everyone to share the episode as widely as possible. I guess the key thing is about raising awareness.

 Sarah Land  32:11

Yeah, I think for us awareness is the biggest thing. Reaching families offering support. But yeah, just thank you. Because from you sharing things, we can …  you know, that's made a difference over a couple of weeks. So, yeah, thank you so much,

 Gill Phillips  32:27

And grow these networks and support each other. Yeah. It's brilliant. Thank you so much, Sarah.

 Sarah Land  32:35

Thank you very much. Speak to you soon.

 Gill Phillips  32:38

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.

Sarah Land is the founder of the Peeps HIE charity
How it all started – Heidi’s story
Hearing from other parents really helped
Who is ‘qualified’ to set up a charity?
Desperate to go home – or scared to go home?
Parents can contact the charity when the time is right for them
Going home with a new baby is tough at the test of times
Everyone’s experience is different
Connecting and joining forces with other people helps
Good stuff. Passionate stuff. How to make it sustainable?
The connections are really growing. Strong links to our #FICare project
Peeps HIE - new professional panel, in addition to the existing parent panel
The power of Twitter!
Whose Shoes work around services for children and families
… and Family Integrated Care
Getting the balance right - Family Integrated Care but making sure there is always proper support
Each family is different – personalised care is so important
Going home – with as much confidence and support as possible
Thinking differently – improving lives rather than just measuring bed days and financial outcomes
Whose Shoes thinking - bringing in more humanity
Being able to laugh and enjoy life, even when things are difficult
HIE - Hypoxic Ischemic Encephalopathy- what is it?
Sarah’s top tips – listen to people and see them as individuals
Please help Sarah raise awareness!