CARE OUT LOUD
Interview with Lauren Ingledow - Part 2
Lauren Ingledow:
That's, that's my personal reason is for, you know, doing this work is that I, on paper, I look like I've done well, you'd look at my background. I probably think her prematurity hasn't really affected her on that much, but it's the internal impact it's had on me and my, my family, my mum people that know me well would say that it's had an impact.
And I don't want future generations, even current generations to continue to feel that sense of sadness and frustration and anger because it's, it's not fair. Yeah.
Mary Coughlin:
It's, it's not, it's not loving. It's not it's not what we're here to do. I mean, I think, you know, the, what seems, what seems like such an an expected natural thing to just embrace individuals, wherever they are, meet them wherever they are, and then support them on their journey.
It just seems like such an easy, right thing to do. We struggle with our systems, right? I mean, we struggle. We want to make it easy for ourselves, you know, for the, for the provider, for the, for the institution. And so we create these guide rails and everyone needs to fit into this framework. Yeah. And I think what we, what you're showing us and Is is that that that doesn't serve that, you know, creating institutions of education and health care of justice isn't about serving the institution.
It's about serving the individuals who, you know, who are reaching out for support, either healthcare, education social justice and any of those kinds of things. So I think that's really what what you're highlighting here through this advocacy of this very important work. group of individuals that have survived something absolutely, you know, just horrific, challenging.
But it's not just about surviving your life, right? I mean, you don't want to, it's about thriving and flourishing in your life. And when you meet up against so many roadblocks It's not it's not, well, you, you've achieved you know, I've got a college degree so you're fine. I'm more than, you know, my, my college degree.
It's really trying to transcend that and see people as multi dimensional, not as one dimensional, right? And, and that those multiple dimensions really speak to the, the totality of their. their happiness, their quality of life, and that sort of thing. So I think, you know, if you were to kind of think about all the amazing stuff that you've done now, are you formed the Advocacy Network when you were 26?
So it's been about eight years, or how long has it been?
Lauren Ingledow:
No, no, so the Adult Premium Networks, I joined Jeff and Juliet were there before me. Okay. I found them, so I joined them in November. 2020. And we started the advocacy group in January 2021. So we've just had our two year anniversary. So we've actually only been going for two years.
And I think sometimes I sit down and think, Oh, we haven't done anything, but actually in the space of two years, we've made massive strides in Reaching out and connecting with people.
Mary Coughlin:
How has your community grown, Lauren?
Lauren Ingledow:
So, between the two Facebook groups we now have 315 members, so 178 of those are adults born premature. Amazing. So and for the website we've had 1, 751 Visits in the space of two years.
And from the data we're being accessed by people from 51 different countries.
Mary Coughlin:
So, Oh my goodness. I was going to ask you the reach that is phenomenal.
That is so where you're at now though. I mean, so we've had conversations about the direction that you want to go. Do you feel cool about sharing maybe some of the vision that you have for the next. For steps, the ADV advocacy group and, and your mission in, in helping these individuals.
Lauren Ingledow:
Yeah, so I think we'll continue to reach out to researchers to try and encourage them to share their work publicly.
I suppose maybe if anyone watching has any tips on how to connect and translate this research into clinical, Daily practice would be awesome because that's something we sit and scratch our heads about quite a lot because there's definitely still a barrier there. And I don't think that's deliberate. I think that's again, it's education and awareness.
So maybe trying to create a continuous professional development programs for primary care consultant level. education programs. That is probably the first step. Juliet is a nurse, a paediatric nurse herself. So she's been fantastic in reaching out to her lecturers. And I know she's given similar talks to me, to students to try and encourage a greater understanding and get them to think about that.
Within their career. So I think they're the main aims for sort of this year. Anyways, brilliant.
Mary Coughlin:
Brilliant. Are there specific needs support or resources that you're able to provide to the members of the network? The advocacy network.
Lauren Ingledow:
Yeah, so I mean really at the moment it still is really finding the academic papers, and for which I mean I totally understand me and Juliet having been to university and studying scientific topics.
We have a little bit of an advantage maybe over some people in that we are able to half understand some of the things that they're talking about. So one of our main aims this year is to really focus on creating plain language summaries of these papers to make them accessible. Because my background is veterinary, but it's very much orthopedic so bones, ligaments and neurology so whilst I have a general overview of how the body works, it's not my specialism.
So I try to disseminate this research. In as much as my understanding goes, but I'm very wary I suppose I don't want to interpret this information in the wrong way. Yeah, and give false information so that's something I think, again reaching out to the wider community. If we can have some help with that, that's brilliant.
I know Mary, you're going to help us with some wonderful webinars into explaining trauma informed care and maybe a little bit of stress and epigenetics and how that's going to impact us because again, it's not just health, it's mental health. Yes, that is definitely being impacted. And I think for us, everyone's at very different levels of where they... are in understanding their journey within the scope of prematurity, how it's impacted them. But I think just being able to provide people with the basic information of how this may have impacted you would be so beneficial. Because again, it's going back to the I'm not crazy thing. This is, you know, it does have an impact on, on my life and my quality of life to varying degrees, but it's having access to that information to feel supported and to feel heard and recognized.
Mary Coughlin:
Yeah. And I think, I mean, knowledge is powerful, right? And the more knowledge you have and particularly knowledge it's grounded in evidence and science then you, I feel like a more confident advocate for yourself when you're engaging with your, you know, your primary care clinicians or, you know, any, anybody that you're interacting with.
So I'm, I'm excited to do this. We need to get some dates on the calendar to, to move it forward, but it's, it's really exciting. And I, and I like that, you know, you know, when you were doing the searching that this idea of trauma informed care really seemed to You know, resonate with you that you that you were able to make that connection.
Because, of course, you know, I absolutely believe that You know, that premature birth or even, you know, for full term individuals that require intensive care. That's a traumatic event in your life that's happening during a powerfully vulnerable period of development. So, understanding, you know, just the consequences of that.
Go well beyond that short term neonatal period. And and people need to understand it. And so it's been really just brilliant to have major acquaintance to have the opportunity to connect with you and support your mission, because really and truly more in your mission is, is aligns with my mission, you know, and the mission of of carrying essentials to create a kinder, more connected and compassionate, compassionate world.
So, you know in the we've we've kind of touched on this, you know, already throughout the conversation, but just for Claire, you know, kind of clarity sake. How do you see your work right now then impacting society at large, you know, impacting the community, but also impacting future generations.
Lauren Ingledow: Hopefully in a positive way. So even just the fundamental fact of feeling connected to a community is the start. I think on anyone's journey is just the acknowledgement, but anything we can do to spread the word in a, and I think as you alluded to earlier, there is a sense of frustration within the community that we.
You know, 40, 50, 60, sometimes years down the track. The level of movement has been minuscule in some respects. But it's about trying, I think, to recognise that I'm 1980s baby. I was born at 26 weeks. There weren't the numbers there to extrapolate this knowledge in a definitive way. We're beyond that now.
Yes. And from my point of view, there isn't an excuse anymore to say, you know, oh, you know, we need to keep researching or no, it doesn't impact you. Yeah. It's putting this into place. So that people do have access to support or informed support is the key. Yeah, I think
Mary Coughlin:
you're absolutely right and I love what you just said.
I mean research is wonderful and I think you know the more knowledge we have, you know, is great, but you can't keep researching something now that you know that there is a connection now that you know that this premature birth, this early life adversity. Has completely derailed the developmental trajectory of these individuals, and it's not about what I think.
You know, of their experience. It's about their personal lived experience of the life that they have. And all of the experiences that have created that life. It's what that life means to that individual. And are they living their fullest life? And if the answer is no, then it is incumbent on us to address that in meaningful, measurable, compassionate, holistic ways.
Right. I mean, it does. It's wonderful that you went to college, you know, I mean, everybody would be like, yeah, so what's your problem. There's so much more to who you are than a college graduate right who I forget which wise person said we're greater than the sum of our parts. And we really need to fully embrace that and so I and I think that that's exactly what you're showing us.
Right now. And you're sharing with your incredibly eloquent presentation of the work that you do. The journey that you've been on is just so incredibly amazing and admirable. And we will make a difference. I mean, that's, you know, that's what this work is about. That's what this podcast is about.
Getting that information out there, letting people hear these stories and be compelled to take the action that is so necessary. To transform the experience of all of these individuals and their entire developmental trajectory. It's just amazing. I mean, yeah, go ahead. Go.
Lauren Ingledow:
Let me stick in. I don't have a cold and I don't have COVID.
So my voice is probably the most noticeable part of my prematurity. So I have vocal cord paralysis from being on a ventilator. That's just another, it's a perfect example of how. being premature can impact you. The first thing people ask me is, and they are well intentioned, do you have a cold? But imagine being that with every interaction you have with people, ask you is, do you have a cold?
Mary Coughlin: Yeah. I mean, it's, it is, it's such a simple thing and it's something that this has always been a part of who you are. This is your voice. But it's, it falls out of the range of what we expect a voice to sound like. And so we go to that other place.
We go to that place. That judgment place instead of a place of, and I mean, people are going to ask, right. I mean, and that's okay to ask, but then the answer is so insightful. Who would have thought. You know we know that a certain percentage of individuals who experience intubation will have a, you know, the consequence of vocal cord paralysis.
But what does that look like when you're a 34 year old woman? This is what it looks like. And it, it's not that it has derailed you as a, as a human being, but it is a unique feature that needs to be recognized, honored, embraced. I mean, it's just, yeah, it, yeah,
Lauren Ingledow:
it's and again, it, it's, it's the reality of it.
I can remember at school, you know, everyone always says, speak up. Can you shout? It's like, no, actually, I, I, I can't. I can't. Yeah. And it's not deliberate. I can't, I just, I'm not physically capable. ,
Mary Coughlin:
it's, I, yeah, I, I think that this is really amazing information that's really going to It really touched the hearts and souls of so many people and also awaken the curiosity of others.
I know you're working with several researchers who are specifically committed to adults born premature. And so the more that work gets out there, the more this research is available. We need to really advocate and be super proactive about getting that research. into the hands of the primary care physicians.
You, I think we've had this conversation before about there's this gap, you know it's like 15 to 17 years between the time research discoveries are made and they're actually implemented into clinical practice. People don't have 15 to 17 years to wait. Right.
Lauren Ingledow:
I've, I've got the prime example for that one.
So My birth history is my mum had preeclampsia. So, for one, there's a whole different conversation about how she, she is well, but she hasn't been followed up in the sense of kidney function, blood pressure, etc. But from reading, there's also evidence to suggest my risk of blood pressure, kidney function.
There we go. And there is some evidence for early risk of stroke as well. So by the time for early forties, I think that evidence is pointing to, but like you say, I'm 34, I'm creeping up to 40 and I have no idea because no one understands. It could be that this, that. side of it will never impact me, but I don't know.
And at the moment it's a bit like a noose hanging over or hanging here because I don't know what's going to happen. And that will have an impact on people's life choices, I think. If you, you are aware of having something that might be life limiting, do I? Take me as an example. Do I now sit here and effectively retire, wondering, you know, am I not going to be here by the time I'm 50?
Or, can we do something about it to modify that? Can I have some assessments to give me a better understanding of what my real term risk is? And I can plan accordingly. But
Mary Coughlin:
also, are there some strategies and interventions then? That can be initiated that can actually mitigate. that those risks that you are you know, identified as having as a consequence of prematurity and, and being the birth of a preeclampsia being the predisposing event.
So again, you know, that idea of a specialization doesn't sound so far fetched. I mean, it really sounds like an incredible opportunity to. improve the health of this very unique population that has identified risks. We now know that this population has unique medical needs that are not being addressed, that are not being investigated and explored in ways that can enhance the longevity of your life and the quality of your life as well, both physiologically and emotionally.
Because, I mean, It's the American Psychiatric Nurses Association here in the U. S. They had this really awesome white paper, and it was in, it was titled, All Health Begins With Mental Health. That, you know, your physical health causes anxiety that exacerbates your mental state that then activates a physiologic stress response, and it just becomes this crazy, you know, feedback loop.
And so, You know, we need to focus on both dimensions, the whole person, right? It's mind, body, and spirit, spiritual health as well. There's just so much that needs to be done and it's absolutely brilliant that you're leading the charge with your colleagues, Jeff and Juliette to really address and, and form this network that obviously now, I mean, global reach.
That's brilliant. 51 countries and hopefully even more. So I'm so honored you know, that, that you're doing this work that we've had the chance to meet. If you were to if you were to kind of pull back now, all right, you're, you're doing all of this amazing work. And I, and I know when you're in the throes of the work, it always feels like you're never doing enough because there's so much more that you have to do.
Is that fair to say, Lauren? Yeah. Yeah. You know, I mean, right, right now in this moment. What is your one big thing that one big thing that would let you know beyond a shadow of a doubt that you have reached your, your vision that you're that you're doing what it is that you need to do. Is there one big thing out there that you're
Lauren Ingledow:
I dunno. Anywhere it's a tick box. Yeah. It's being at that point where people are aware and they're educated on the impact of prematurity and prematurity is included as a. Tick box. Yeah. As an acknowledgement that there may be a need for some support.
Mary Coughlin:
Yeah, that it's definitely a contributing factor to your overall health and wellness.
Brilliant. That's absolutely brilliant. Well, I mean, I have to be honest with you. You absolutely exemplify what it is to care out loud, to be able to take your own life story and, and. And use it as a, as a place to engage with other folks that are also, you know, struggling with very similar experiences struggling, you know, to feel seen to feel honored and acknowledged for their own lived experience.
You're just you're doing it and I'm just so blessed to to have made your acquaintance and to have had you come on and and share the work that you're doing with
Lauren Ingledow: us. Thank you for all the work you're doing because without you, I wouldn't be able to look back and say, Oh, actually there's someone, another person I can reach out to and connect with that understands my, my journey and my experiences and the group's journey.
And you're so open and willing to listen and discuss. It's, it's really humbling. It's lovely.
Mary Coughlin:
Oh, God bless you. We're, we're on the same mission. I think we're kindred spirits to be sure. Thank you so very much.
