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Ep 47. Karen Burgess, Founder & CEO Petals, with Alice Bailey: Life after Baby Loss
105 Plays1 year ago
Trigger warning: This episode explores and talks about miscarriage, stillbirth and baby loss.
Baby loss and miscarriage is something that many parents face and yet it is still something that is not openly talked about in today’s society.
In this very special episode, I speak with Karen Burgess, Founder & CEO of the charity Petals, that provides counselling support to families affected by baby loss. Karen and I are joined by Alice. Alice shares with us the story of her daughter, Vera, and the journey that she and her husband, Dave, have been on with Petals.
Together we seek to dispel the stigma surrounding baby loss and encourage those who need support to reach out to specialist services like Petals. Recorded August 2023.
Guest Biography
Karen Burgess is the Founder and CEO of Petals, The Baby Loss Counselling Charity.
Karen has been a practising counsellor since 1998. Alongside running a successful private practice, she gained wide-ranging experience across schools, the NHS, addiction units, workplaces and hospital settings. Since founding the organisation in 2011, Karen has grown Petals into a national charity, with 35 counsellors delivering over 6,000 specialist counselling sessions every year.
Karen has become a leading player in influencing change in the field of baby loss support and in raising awareness of the need for psychological support for bereaved parents. Karen is a member of the Pregnancy and Baby Charities Network, the All-Party Parliamentary Group for Baby Loss and the International Stillbirth Alliance (ISA).
Alice Bailey is a clinical nurse specialist originally from Sheffield. She now lives in Surrey with her husband, Dave, and their three boys, Fred, Ralf and Will.
In 2016, Alice and Dave became first-time parents to their daughter Vera. Vera was sadly stillborn at 38 weeks. Alice and Dave have since been supported by Petals, who have been by their side every step of the way.
Links
www.petalscharity.org
Baby loss and miscarriage is something that many parents face and yet it is still something that is not openly talked about in today’s society.
In this very special episode, I speak with Karen Burgess, Founder & CEO of the charity Petals, that provides counselling support to families affected by baby loss. Karen and I are joined by Alice. Alice shares with us the story of her daughter, Vera, and the journey that she and her husband, Dave, have been on with Petals.
Together we seek to dispel the stigma surrounding baby loss and encourage those who need support to reach out to specialist services like Petals. Recorded August 2023.
Guest Biography
Karen Burgess is the Founder and CEO of Petals, The Baby Loss Counselling Charity.
Karen has been a practising counsellor since 1998. Alongside running a successful private practice, she gained wide-ranging experience across schools, the NHS, addiction units, workplaces and hospital settings. Since founding the organisation in 2011, Karen has grown Petals into a national charity, with 35 counsellors delivering over 6,000 specialist counselling sessions every year.
Karen has become a leading player in influencing change in the field of baby loss support and in raising awareness of the need for psychological support for bereaved parents. Karen is a member of the Pregnancy and Baby Charities Network, the All-Party Parliamentary Group for Baby Loss and the International Stillbirth Alliance (ISA).
Alice Bailey is a clinical nurse specialist originally from Sheffield. She now lives in Surrey with her husband, Dave, and their three boys, Fred, Ralf and Will.
In 2016, Alice and Dave became first-time parents to their daughter Vera. Vera was sadly stillborn at 38 weeks. Alice and Dave have since been supported by Petals, who have been by their side every step of the way.
Links
www.petalscharity.org
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Transcript
Introduction and Personal Stories
00:00:00
Speaker
not only did Petals support us through our absolute darkest days, I always say they're like our lifeboats so they're continually bobbing just next to us and some days I don't even need to look at the lifeboat, I don't need it. Other days I'm slap banging that lifeboat and Karen's in there with me and she's spooning out water and it's the darkest of dark days but they're there and the thought of other families
00:00:24
Speaker
losing children like we lost here and not having a petals or not having a Karen. For me just feels barbaric because I wouldn't be here, my children would not be here had we not had the support from petals.
00:00:46
Speaker
Welcome to an exciting new season of the Charity CEO podcast, where we bring you the stories and insights of remarkable charity leaders who are changing the world for the better. We talk to the people who run nonprofits, the movers and shakers who are driving positive change in this space, inspiring you to take bold action and make a difference.
00:01:05
Speaker
To all our listeners across the globe, I'm thrilled to have you with us. We've received amazing feedback from listeners in over 42 countries, including the UK, US, Australia, Canada, and India. Your support and engagement is what makes this community so special. To all of you who pour your hearts and souls into making the world a better place through your work in the charity and nonprofit sectors, thank you. I'm Divya O'Connor, and here's the show.
Experiences with Baby Loss
00:01:35
Speaker
Trigger Warning. This episode explores and talks about miscarriage and baby loss. Baby loss and miscarriage is something that many parents face, and yet it is still something that is not openly talked about in today's society. In this very special episode, I speak with Karen Burgess, founder and CEO of the charity Petals, that provides counselling support to families affected by baby loss. Karen and I are joined by Alice.
00:02:01
Speaker
Alice shares with us the story of her daughter Vera and the journey that she and her husband Dave have been on with petals. Together, we seek to dispel the stigma surrounding baby loss and encourage those who need support to reach out to specialist services like petals. I know this conversation will move you, as it did me.
00:02:23
Speaker
Hi, Karen. Hi, Alice. Welcome to the charity CEO podcast. This is a very special episode as it is the first time that we have had someone who has benefited from a charity services on the show along with that charities chief executive. So Alice, thank you so much for being here and thank you for being willing to have this conversation with us. No, thank you for having me.
00:02:45
Speaker
So I always start the show with some light-hearted icebreaker questions. I have three questions for each of you and Alice coming to you first. What was your first job? My first job, I was a Saturday girl in a hairdresser's, which I wasn't very good at because I had to make lots of tea and coffee. That's not a strong point for me at all.
00:03:07
Speaker
But yeah, Saturday girl. And you, Karen. Hi, Divya. Yes. So my first job, I had to really sort of stretch my memory here, again, was a Saturday job. And I worked in boots when I was 14. But I worked in the record department, which of course doesn't exist any longer. But I just thought it was the coolest thing in the world to be selling all the, you know, the popular records of the time. So yeah, great fun.
00:03:33
Speaker
Wow, I did not know that boots sold records. Oh, yes. No. Question two, what would you say is your professional superpower?
00:03:46
Speaker
I would say, so my day job, I'm a nurse, and I think my professional superpower is empathy, which is a superpower to a point, but sometimes it can slip into not being so super powerful, but yeah, empathy. And I did have to double check my superpowers with both my mum and my husband, and it did take a little while for them to come up with one, but we decided either empathy or managing on little sleep. And Karen, how about you?
00:04:15
Speaker
Well, I'm sorry to be a bit of a copycat, but I was going to say empathy as well. For me, empathy is who I am, and that's what brought me into counselling training.
00:04:27
Speaker
And it's certainly what compelled me to start up Petals, the empathy for bereaved parents and seeing how much that support was needed. So yeah, it can be a bit of a curse as well sometimes, I think, particularly in a role of CEO, because sometimes you have to make some really difficult decisions that affect other people and your empathy gets in the way of that big time.
00:04:50
Speaker
We might come back to that a bit later on in the conversation, Karen. But the final icebreaker question, if you had the opportunity to interview anyone in the world dead or alive, who would it be and what one question would you like to ask them?
Inspiration and Influences
00:05:04
Speaker
mine would be and I know I should think of somebody like the scientist who invented the antibiotic or something but mine would be Mary Berry and for obvious reasons such as how do you get your cake so light and fluffy but also she lost her son when he was 19 years old and
00:05:25
Speaker
from an outsider her life looks so full and she's achieved so much she's so successful she looks incredible at her age and i want to know how she's done that how has she kept going and kept being so wonderfully positive and successful.
00:05:43
Speaker
and just woken up every day. I just think that's something that I really resonate with. So I would have her around, we'd bake together. I would ask her a hundred baking questions. But my big question was, how have you continued? How have you done it all? And Karen, how about you? I would love to meet and to interview Ricky Gervais.
00:06:05
Speaker
Now, I think he is an incredible writer and his characterisations are just mind-blowing, I think. But the thing that I love the most about him and of his work is Afterlife, where I think the way he is able to make grief and, well, the loss of a loved one so kind of accessible
00:06:29
Speaker
is incredible, to take the stigma of that and turn it around so that you want to watch. But not only want to watch, you also want to laugh as well as cry. I think is genius and I think he is a mastermind and I would just love to talk to him and ask him how he does that, what process he goes through to be able to create something as good as afterlife.
00:06:55
Speaker
Wow, I think both of you have given answers that are absolutely beautiful and so relevant to the topic of our discussion today.
Founding of Petals Charity
00:07:04
Speaker
So as you mentioned, Karen, you are the founder and chief executive of the organization PETLS. I understand PETLS stands for Pregnancy Expectations Trauma and Loss Society. Tell us why you set up PETLS and what you provide for clients like Alice.
00:07:23
Speaker
I'm a counsellor. I qualified as a counsellor back in the year 2000, and I love being a counsellor. I think I'm good at being a counsellor. And I had all sorts of different jobs across those early years. But in 2009, I kind of got my dream job, which was to be a counsellor in a maternity service. And I was tasked with setting up
00:07:48
Speaker
a counselling service for the women and partners who experienced baby loss. Now, for me, this was actually in the maternity setting where I had my own children, so it was very familiar to me, but it was one of those sort of life-changing experiences within weeks of working there. I felt like I discovered the hidden world of baby loss because I had no idea
00:08:13
Speaker
that so many babies were dying on a weekly basis in every maternity unit and I had no idea of some of the reasons for that and so to actually be there to be alongside those parents which was my job was to kind of go onto the ward and to be with parents
00:08:31
Speaker
after they'd been given the news that their baby, a scan maybe had identified that their baby had died, or I would go into the delivery room after they delivered their dead baby and be with them. It just had a profound effect on me and, yeah, moved me incredibly, but also enabled me to use my skills, my counselling skills, and the empathy, as I've already mentioned, to really, really connect and make a difference.
00:08:59
Speaker
Not only for the parents, it was also really helpful to the health professionals as well because having me there meant they didn't have to deal with the emotional stuff. So it felt like such a worthwhile role and that it provided something that was missing for parents. And then what would happen would be that I would kind of build a relationship with these couples and then they would come back into the maternity unit
00:09:24
Speaker
to see me for counselling in the weeks and months afterwards as they tried to come to terms with this new reality that they were having to live with. An amazing job, one that, as I say, moved me incredibly. Then, as happened so often in NHS settings, a year and a half down the line, they decided
00:09:44
Speaker
that they hadn't got any more money to fund my role, that they needed it for midwives. I think there was a bit of a cost of living crisis going on at the time. This was 2011. And so basically they cut the role and gave me a month's notice to close that counselling service, which was devastating on many, many levels.
00:10:04
Speaker
But I guess more than anything else, it made me really angry. And that fueled me. I was really left with this feeling of injustice and thinking of all the great work I'd done, all the people's lives I'd made a real difference to, and how no one else was going to be able to benefit from that going forward. And so I started to think about how I could ensure that this work could continue.
00:10:27
Speaker
And I eventually, through quite a sort of a complicated process, eventually got to the point of thinking, okay, maybe I could set up a charity. Because if I set up a charity, I could get money then, people could donate money, I could apply for money that would fund the service, and then parents would be able to easily access it. It would not be difficult for parents to access that service, and it would not be dependent on their income to be able to pay for that.
00:10:54
Speaker
So that's what I did. I Googled, how do you set up a charity? I kind of filled the forms in. I managed to gather some people to come along and be trustees for me. And in July,
00:11:08
Speaker
2011 Petals was born. That's how I like to think of it. And since that time, we've developed the service across many, many different areas of the country. What we do is we provide a specialist counselling service for parents who experience baby loss.
00:11:27
Speaker
So any baby lost from an early miscarriage through to termination for medical reasons, stillbirth of a baby, a neonatal loss of a baby, or a baby that maybe dies of SIDS, they will be able to be referred by a health professional to Petals and have access to a specialist trained counsellor within Petals free of charge.
00:11:50
Speaker
We are now working across, it's about 16 NHS Trust hospital sites across the country. We are providing support for around about 1,000 cases every year. We deliver 500 counselling sessions each.
00:12:08
Speaker
month and we have 34 councillors working for us. When I say that, I can't quite believe it myself that in those years that we've been able to achieve that much. But we've been able to achieve it because the need is there. This is the thing. The need was there back in 2011 and the need is still there.
00:12:28
Speaker
Well, thank you, Karen, firstly, for setting up Petals. There are so many wonderful organisations in the third sector that are very much set up by founders who are fuelled by anger and injustice. And so thank you to all of the founders out there as well. Alice, this seems like a good point to come to you. So please, tell us about Vera.
Healing and Support
00:12:51
Speaker
So Vera was my first child and I became pregnant with her in 2016 and had a very normal, boring pregnancy full of excitement and she was the first grandchild on my side of the family. So lots of excited aunties and grandparents.
00:13:12
Speaker
And when I hit 38 weeks, we had a day where she was just very quiet. So I went into the hospital and got checked out. And it was really busy, but they checked her and said, no, no, no, baby's fine. You can go home. Went home. And the next day I remember thinking, oh, she's still a bit quiet.
00:13:29
Speaker
but had nothing to compare it to. It was my first pregnancy. And then I remember my husband saying to me, shall we go back in? And I said, no, no, we've got our 38 week appointment tomorrow. So let's go in the morning. And then we got there in the morning and they couldn't find her heart beat with a doppler. So they said to me, you're going to have to go around and have a scan. And again, I very clearly remember saying to Dave, we haven't brought our hospital bag.
00:13:57
Speaker
first baby. I had the going home outfit. Anyway, so we went round to the labour ward and they did a scan and then the doctor said, I need to go and get the professor. And again, it didn't enter my mind that we'd lost the baby. And then he came in and he scanned
00:14:19
Speaker
briefly and then he looked at Dave and he looked at me and he just said, I'm really sorry, your baby's died. There's no words to describe it because it's something that we never imagined. And even now it's happened to me. I still can't articulate what those first few minutes were like. Some of those minutes are so clear and then some minutes I can't remember how we got from the hospital home. I don't remember that journey at all.
00:14:44
Speaker
But we got brought into another room and two doctors explained to us that we would have to go home for a couple of days and come back in for me to give birth. And I remember saying, what do you mean? Can't you just do a caesarean? Why do I have to wait? But in hindsight, I am so glad we got to go home. A, we got to go home and continue being a small family of three for two more days.
00:15:10
Speaker
I got to take things that I wouldn't need out of my hospital bag, like nappies and other things. It gave me and Dave a minute to get our breath. I remember the night before we went back in and he said, I need to cook you a special dinner.
00:15:29
Speaker
And I remember thinking, what are you talking about? No. And he said, A, you need energy tomorrow to give birth to our baby. And B, this is the last time we're going to feel any sense of normality. Even though we were drowning, he just wanted us to have that moment. So I remember he cooked us steak and green vegetables because he said they were filled with iron.
00:15:49
Speaker
And then we drove into hospital and I remember the walk, where we gave birth, it's quite a long walk to the Labour ward, you have to walk down a road. And we walked down there and I remember him saying to me, this is it now, we've got this. And I felt strong walking to that hospital. It wasn't until I got into the Labour ward and I heard babies being born that I just thought there is absolutely no way I'm going to do this.
00:16:13
Speaker
And what Cara mentioned earlier about supporting the staff, there wasn't a counsellor on our ward and the midwife who delivered Vera, I remember really crying. And then I became quiet and well afterwards and had to go to theatre and the surgeon was crying. And then when we were back on the ward with Vera, the anesthetist came in and I'd asked for my parents to come. And I said, I can't talk to them right now. Will you go?
00:16:42
Speaker
And eventually when I saw my parents, they just said that the anesthetist sobbed throughout her telling what had happened to us. But yeah, so we had a little girl Vera. She was six pound nine. She looked like me. She had big feet. She had a big chin like mine. Dark hair. And was perfect, but she died. And
00:17:06
Speaker
It just felt like the world had broken. We couldn't understand how we were meant to continue or do anything. We seem to have lost any ability to make any sort of decision. And we had a bereavement midwife and she told us about some groups. And I said to Dave, how am I going to sit in a room with people that aren't as sad as us? Because I couldn't imagine anyone feeling the sadness that we were feeling.
00:17:30
Speaker
But she also told us about petals and that afternoon I emailed Karen and she replied straight back. But I think I asked her, when should I start this? How is this going to work? And I was quite poorly. So I was in hospital for a little while. And I think we first met with Karen about a month after Vera was born.
00:17:52
Speaker
And we went into this room, which was a really calm room with Dave, and we sat on the sofa. And I remember saying to Karen, are we going to be okay? And she said, yes, you are going to be okay. But it was the first time I believed it.
00:18:08
Speaker
out of everyone you ask because everyone around us was also really sad and there were things that I needed to say there were things that I wanted to ask that I couldn't ask or say to anybody else and walking home from that appointment the first appointment with Karen I remember me and Dave just thinking we're going to survive this we might not be happy again but we're going to survive it and up until that point I wasn't sure how we were going to
00:18:31
Speaker
function in the day-to-day world because you lose a baby and your world crumbles but the world still continues. Babies are still being born and your friends are still having babies. I was 29, all of my friends were pregnant or thinking about getting pregnant and we were just in this devastated hole of doom but then we met Karen and it changed. It changed something inside us that just allowed us to feel safe again which we hadn't felt in a long time.
00:19:00
Speaker
Well, Alice, firstly, thank you for sharing that with us. And I am sorry that obviously you and Dave had to go through that, as many parents do across the world. So in terms of the support that you received from Karen and from Petals, that was ongoing counselling support. Tell us a bit more about how that shaped up in the sort of months after Vera's passing.
00:19:27
Speaker
So Petals can offer six free sessions and I remember after our third session and Karen said do you want to wait two weeks or three weeks to your next session and I said can we wait three weeks because I want to spread them out because we're approaching the last one and she just gently said we're not going to stop until you feel ready and me and Dave had 23 sessions I think with Petals
00:19:53
Speaker
And six months after Vera was born, we fell pregnant with our son. And that wouldn't have happened without petals. A, I wouldn't have dreamt of trying to have more children, but I wouldn't have been able to do the pregnancy without my kind of three, four-weekly check-in with Karen. And it wasn't just about managing the fear of, am I going to lose?
00:20:19
Speaker
Fred, my son, it was how am I going to continue being there as mum and the same time as being Fred's mum because whatever the outcome was, I was either going to lose him and be devastated or I was going to bring a baby home.
00:20:37
Speaker
and after not bringing my daughter home. And I was so worried about how that was going to affect me being a mum to a live child. And the questions that people ask you, oh, is this your first baby? Still to this day, people always say to me, I've got three boys now. Oh, are you going to try and have a girl? And you always have to weigh up that balance of, I don't like denying beer if she's my daughter. And if people generally ask me, I'll say, no, I have four. But it was all these tricky little hurdles.
00:21:04
Speaker
and Karen just kind of held our hand through every step of the way. And even now, so I've had Vera, then I've got three boys who are five, four and eight months. And in between my middle son and my youngest son, I had two miscarriages. And every time I fall pregnant, and whether it be a happy outcome or a sad outcome,
00:21:27
Speaker
One of my first thoughts is Petals. Petals is so integrated in our life and not just with pregnancy but missed milestones. When my son started school last year he should have had a sister in year one. All of these hurdles are so difficult but Petals is kind of right there and whether it be that I email Karen or I message Karen
00:21:49
Speaker
Or it might just be a case of me sitting there and thinking about a conversation that we've had. So not only did Petals support us through our absolute darkest days, I always say they're like our lifeboats, so they're continually bobbing just next to us. And some days I don't even need to look at the lifeboat, I don't need it. Other days I'm slap banging that lifeboat and Karen's in there with me and she's spooning out water and it's the darkest of dark days, but they're there.
00:22:17
Speaker
and the thought of other families losing children like we lost Vera and not having a petals or not having a Karen for me just feels barbaric because I wouldn't be here my children would not be here had we not had the support from petals. So when you ask me how do they continue support I probably think about petals every single day because every time I think about Vera which is you know multiple times a day I think of petals.
00:22:47
Speaker
Yes, one of the reasons I was very keen to have this conversation with the two of you is because of this ongoing stigma that you refer to there, Alice, that seems to surround miscarriage and baby loss and people either don't talk about it or they don't know what to say.
00:23:03
Speaker
And according to the miscarriage association, one in five pregnancies ends in miscarriage. And you mentioned that you had two in between your boys as well. So I miscarried my first pregnancy at eight weeks and it was speaking with other women after that experience that I discovered that actually baby loss is a lot more common than people might think. And
00:23:27
Speaker
Karen, can you give us a bit more context on how prevalent baby loss sadly is in the UK and what you think needs to happen in order to really get rid of that stigma that surrounds it?
Addressing Stigma and Statistics
00:23:40
Speaker
How do we encourage people to talk about such loss in order for them to be able to seek the support that they may need?
00:23:46
Speaker
The stigma is the biggest challenge without doubt in this work, and it's a challenge for parents experiencing it because they feel they've got to kind of withdraw. They feel it's dangerous, almost risky, to share their experience with anybody, but it's the wider perception too, I think, that makes this so difficult. But the reality is, most of us are touched in some way.
00:24:10
Speaker
by baby loss, whether it's ourselves or whether it's somebody we know. I mean, the reality is that one in four women will experience at least one miscarriage during their reproductive lifetime. One in four. So this is so high. And
00:24:26
Speaker
I think we're getting better. The conversation is opening up about this, but there's so, so much more to do around miscarriage. And I think so often we think of miscarriage as being a very early loss. We think of it as something that happens within the early days or the early weeks of a pregnancy. But actually when we talk about miscarriage, it takes us right up to 23 weeks and six days of gestation of pregnancy is classed as a miscarriage if that pregnancy is lost.
00:24:55
Speaker
So when you think about all of those people who are going to their 20-week scan and seeing their baby and making that strong connection with their baby and very often naming their baby at that point, there is still the risk that miscarriage can occur.
00:25:10
Speaker
Now, once we get past that 23 weeks and six days, we go to 24 weeks, and that is the starting point for stillbirth. So anything from 24 weeks gestation pregnancy through till term, through to 38, 40 weeks, is classed as a stillbirth. Now, around about seven babies are dying every day in this country from stillbirth, and another three will die through dying just after birth. So it was classed as a neonatal loss.
00:25:38
Speaker
These numbers are high, they're significant, and it means that in most maternity units, there will be a loss, one of these later loss occurring probably once a week, and certainly the earlier losses will be happening on a daily basis through the early pregnancy units. Of course, there's also that the earlier losses that are occurring that women aren't going to hospital, and very often they're not reported, so they're not actually included in these statistics.
00:26:06
Speaker
So, yes, it's a massive area and one that, gosh, really, really needs investment. I think that's what's missing, attention and investment in care for women and partners as they go through these early stages of pregnancy and navigate all of these kind of hurdles that, to be honest, you kind of aren't anticipating most of the time.
00:26:32
Speaker
Wow, those figures that you just shared there, Karen, are really shocking. Seven babies dying every day by stillbirth and another seven dying in the neonatal ward. So another three, another three in... Sorry, another three.
00:26:47
Speaker
So I know in July this year we had a briefing published for integrated care systems with respect to maternal mental health, because obviously baby loss has a profound impact on mental, emotional and physical wellbeing of mothers and partners. And research by Embrace UK shows that actually suicide is the leading cause of death amongst women in the year after pregnancy.
00:27:13
Speaker
But could you tell us a bit more about this integrated care report that has recently been published? And I'm particularly interested to hear how you think services like Petals, which are absolutely vital from what we've just heard from you, Alice, how can the services like Petals be integrated into the NHS pathways?
00:27:32
Speaker
It's a really interesting question that because the report you refer to, if you read it, it's all really important ways reporting on vital gaps in care for young families. But the main emphasis of that work is for parents
00:27:48
Speaker
who have a live child. So it's about treating the mental health of mothers who maybe have had a traumatic birth, maybe be suffering from some sort of mental illness after giving birth, maybe postnatal depression or other anxiety-based
00:28:06
Speaker
challenges, but the focus still remains on treating the young family, so treating the mother and then treating the children and ensuring that they have the right support whilst living with a mother who maybe needs some mental health support. So what happens so often
00:28:22
Speaker
For the parents that we're looking after, the parents who don't have a baby, the parents who are almost sort of like cast aside through this process because they are no longer pregnant, so they don't have any sort of maternity support, but they also don't have a live child, and so they're not sort of fitting into these other system, NHS systems. They're sort of falling through the cracks.
00:28:45
Speaker
And dependent on what area you live in will kind of depend on whether or not some of that care path, that maternal mental health care pathway is actually picking you up or not. And so often the priority is not with the bereaved parent.
Importance of Early Support
00:29:00
Speaker
So this is why services like Petals is so vitally important and vitally needed. And the key thing for me here is it's about prevention more than anything else, the work that we do, because we aim to be, we are positioned to pick up parents in the immediate aftermath of their loss. So as Alice described, her and Dave were in touch with Petals within a month of their loss.
00:29:27
Speaker
just at the time when they're trying to kind of think about piecing their lives back together again, they come to us. And that's where we step in. That's where we actually help them then to sort of start to go through that process. And I think this is what makes us unique. And what we find is that if we can have access, and we generally do have access to parents at this early stage, the work can begin when it's really needed, when the parents are kind of at their rawest.
00:29:57
Speaker
and through processing the trauma that they've experienced through the death of their baby, because most of the time there will be trauma there. Those moments when you're told, as Alice said, even now she can't really recollect those moments.
00:30:14
Speaker
The reason for that is because she's experienced trauma. All of that needs to be sort of unpicked and processed. And through doing that, through doing that, then what happens is that the couple can start to gather themselves, actually start to come to terms with this reality that this has actually happened and it's happened to us. And so what are we going to do about it now?
00:30:38
Speaker
And it's that process of starting to heal, starting to make some sense, starting to then think about the impact of this new reality on the life moving forward that prevents the longer term mental health issues like postnatal depression, like anxiety, OCD, those sort of anxiety disorders that really sort of cripple a woman in the aftermath of something so distressing.
00:31:06
Speaker
And I think what you said there Karen is really interesting in that you're right it was the day I gave birth to Vera I contacted Petals and leaving the hospital firstly without Vera with an empty car seat in the back seat but knowing that I wasn't going to have midwives and health visitors and all that stuff but we were lucky enough as awful as it sounds we were lucky enough to give birth to Vera in a hospital that had a connection to Petals so although we left
00:31:34
Speaker
in that hideousness and we had a month before we saw Karen, I'd already been in communication with Petals. So Petals was always there in the background and had I been physically more well, I could have seen Petals a lot earlier on but it was just that I needed time to recover before I could leave the house and things. So we left knowing we were going to have support
00:31:59
Speaker
So that bridge of no health visitors popping around to weigh the baby, none of that, but we had petals. It was there already kind of embedded into our foundations. So the first step, the first hurdle, which was leaving the hospital, petals were already there kind of holding our hand, even though we hadn't met them yet. That email connection had happened knowing that, right, let's get home. Let's do these first few days. Let's do these first few hours.
00:32:26
Speaker
build up and then they were there. So you're so right, it's those initial moments and you were right there. Most services aren't able to engage. They may be able to engage, but they're not actually able to deliver anything, often for weeks, even months, waiting lists.
00:32:44
Speaker
are ridiculously high in most, most areas. But because we are a third sector organisation, because we're not actually part of the NHS, we have more freedom, we can position ourselves better.
00:33:00
Speaker
And so part of what we do is to ensure we form a strong bond with the bereavement teams within the hospital. So the bereavement midwife who supported Alice will know about us. She will have met us. She will have talked to us and she'll fully understand the service that we're providing. So she can almost kind of sell that service for us.
00:33:19
Speaker
to mothers like Alice and say, look, this is going to be a good place for you to go. I strongly recommend it as your next step of care. That really, really makes a difference. So then it becomes the sort of natural transition for the parent. And as Alice says, they're just knowing it's there. They may not.
00:33:37
Speaker
need to contact us straight away, or they may make the contact but actually say, well, can I wait a few weeks to start the counselling? We can do that, we can be flexible in that way. But just knowing we're there makes the difference. And it's kind of like the process we're working with begins at that point.
00:33:56
Speaker
And Karen, talking about positioning your services, I know that a few years ago Petals commissioned a life after loss evaluation, which was conducted by the Centre for Mental Health and was an economic evaluation of Petals services. Tell us what that report showed and do you feel that those findings still hold true today?
00:34:18
Speaker
That was a very, very important piece of work for us, that report, the Life After Lost report. It was actually 2018, so it's a little while ago, and it's a pre-pandemic, so it kind of feels even longer. But to be honest, the numbers actually are not too far off now. I think maybe our costs have gone up slightly, but not dramatically.
00:34:36
Speaker
But quite simply, what the Centre for Mental Health were able to provide us was an economic evaluation of what it would cost to provide our support for every bereaved parent who experienced the stillbirth, England and Wales, for a year.
00:34:52
Speaker
And basically what this was able to show was that every pound invested in petals by the state actually could provide a net return of £2.71 because of everything that we save in terms of those longer term costs of mental health, of people not being in work, of people having any sort of physical issues that need dealing with, actually, petals was a very sound investment with a net saving of £8.6 million per year.
00:35:19
Speaker
So it's a report that I am hoping to bring up to date and represent. At the time, I was able to meet with the then health secretary, Matt Hancock, and share it with him, and he was very keen to take that forward. And I think, as with so many things, it sort of got lost through the pandemic years. But
00:35:39
Speaker
It's a really vital piece of information, I think, that we're keen to take forward with the NHS and try and sort of get our service more established. I mean, the interesting thing is that just as a natural sort of matter of course, we are finding
00:35:54
Speaker
now that more and more NHS trusts are coming to us wanting to commission our service. I think that is partly because there is some money coming through the system for bereavement services because it is recognised increasingly the need for parents' support
00:36:11
Speaker
particularly with things like these high profile cases where these historic clinical negligence cases are kind of being exposed in Telford and Shropshire. The more recent one, I think in Nottingham, there was one previously at Morecambe Bay. What's being identified is that there are problems within maternity service, some systemic problems that have resulted in unnecessary deaths of babies.
00:36:37
Speaker
So services trusts are looking for something to plug these gaps, something that they can make available to parents and so that they are starting to find pots of money and come to us. But what we need is sort of a network approach to that.
00:36:54
Speaker
we need something to come out of NHS England that basically says, okay, you know, this way of working with parents, it's evidenced, we can evidence it works, it is cost effective. That's also been evidenced. Let's get this in place. And that is part of our ambition. That's part of the challenge for Petals is to drive that message forward and to ensure that that happens sooner rather than later.
00:37:18
Speaker
And do you get much funding from government contracts at the moment? Not government contracts directly, no. Our funding comes via the hospital trusts, or what were called the CCGs, they're now called the ICBs within the NHS, so these sort of community hubs around the country. So we get money through these individual settings. And usually that will come from maybe a parent
00:37:45
Speaker
who has spoken to that trust and said, look, I've had some support through petals. This has been really valuable. You need to be looking at this. Or it will come from health professionals talking to each other, obstetricians, gynecologists, midwives talking to each other and saying, oh, this hospital's got a petal service. We should have a petal service because
00:38:06
Speaker
It works. It makes a difference. Everyone says good things about it. So it feels like we are growing and expanding our service, but it's through word of mouth. It's through these more traditional routes rather than us being able to carve out that clear care pathway through the NHS system to actually make sure our service is there for everybody, which it should be.
Broader Implications of Baby Loss
00:38:30
Speaker
Absolutely. And talking now about high profile cases, I feel that at this current moment, we can't have a conversation about baby loss without talking about the horrific case that is front page news as we speak, which is that of Lucy Letby, the neonatal nurse who killed seven babies and apparently tried to kill 10 more.
00:38:53
Speaker
I mean it is just so shocking and tragic and my heart goes out to all of those affected families, in particular the parents of the triplets where Lucy Letby is charged with killing two of their three little boys. And Alice you mentioned that you are a nurse so this probably has another dimension of poignancy for you and I appreciate the circumstances obviously very different but I wonder if you have any words of comfort to share with these families who
00:39:18
Speaker
seven or eight years on are having to relive the deaths of their babies through this court case. What strength or wisdom has your experience of going on to have three healthy boys given you? I think whether it's 10 years ago, 10 minutes ago, or 10 months ago, you relive some of those moments.
00:39:39
Speaker
without a big court case throwing it in your face anyway. But I also think there will be something in those parents who, even though what they are doing is incredibly, incredibly hard, it's a tangible way of being their parent. So although they've lost their child, they're still parents to that child and they are going to have to relive through the most painful moments.
00:40:07
Speaker
of their lives but also it's a weird thing when you lose a child because it's the most traumatic and painful and hideous thing ever but they're still your child they're still warmth when you think about them and
00:40:23
Speaker
a sense of calm in a sea of hideousness because they're your baby and you're their parent and for some of those parents they were their first babies so Vera was what made me a mum so even though I've got Fred, Ralph and Will, Vera was what made me a mum so they will be there and I'm sure a lot of them will be feeling strong because they are doing it for their children and there is strength that comes from our kids for us
00:40:52
Speaker
The fact that I'm a nurse ties into the fact of the way the NHS reports things and the way we whistle blow and the way we are treated if we have concerns about someone else. It's too big for this podcast because I've worked in the NHS for 14 years and I know how it works.
00:41:10
Speaker
But what you said then about me going on to have more children? I just have four. One of them isn't here, but I have four. And Fred, for example, looks just like Vera did when she was born. And my other boys look like their dad. There's nothing linear. I didn't have them, and it made Vera's loss any bigger or smaller. I just have four. My heart just multiplies each time I have another one. And some days are really, really hard. And some days are easier.
00:41:40
Speaker
every day that comes, which I'm sure is what those parents are doing as well. Every day is a new day, and every day, some days are harder, some days are easier, but we continue. That's so beautiful, Alice, the way you described that. And as you were talking, I had a vision of the lifeboat, which was the NRG used earlier, and Vera actually in the lifeboat with you helping you sail on calmer seas.
00:42:04
Speaker
Yeah, absolutely. And when my boys talk about their siblings, Fred will say, I've got two brothers and a sister in the sky. And that's because Petals just helped us ingrain her into our everyday today. And it's not a big poignant moment of talking about her. She is just completely ingrained in our day to day. So yeah, she is in the lifeboat with us. And Karen, from your perspective, yeah,
00:42:30
Speaker
How would you go about supporting families in these circumstances? Would your approach be any different to any of your other clients? Give us your perspective.
00:42:41
Speaker
That's a really good question. I have thought a lot about this and I have reached out to the hospital, to the teams, some of the contacts that I know within that hospital to offer our support. I think the reality is, thankfully, that all of those parents have had some very good support throughout this process because, gosh, it's been a real long, arduous process.
00:43:03
Speaker
From what I hear as well, for many of them now, they're through the court case and they have the verdict that they needed and wanted. There's a sense of relief. There's a sense of something freeing up a little bit here. But for me, there is a core difference here in terms of how they will be experiencing that loss to most of the parents we're dealing with because their children have been murdered.
00:43:27
Speaker
or they have experienced attempted murder for their children that are still alive. I think that's quite a different experience to actually having a baby that is stillborn. Most of the time, you're not really finding out why that's happened, or a baby that lives for a short time and then dies. There's a different process to go through in terms of reconciling that, whereas a big part of the reconciliation for those parents will be her being imprisoned for the rest
00:43:57
Speaker
of her life. That will be the start of them reconciling their loss. But for Petals, reconciliation is what sits at kind of the heart of the work that we do and it's really interesting when you hear Alice talk about this because what she's describing is how her and Dave have reconciled the loss of
00:44:18
Speaker
of Vera, how they've integrated Vera into their lives now and she is still a part of their family but she's not present and everyone understands that and everyone can kind of live with that and be with that. And that is what we aim to achieve for the parents that we work with, that this absolutely devastating tragedy
00:44:40
Speaker
that, to be honest, hits most couples when they're young, when they're inexperienced in terms of loss and coping with loss and even imagining the loss. Their brains are completely focused on starting a family and everything that that means. Loss is just not on their radar and then to suddenly find themselves in that position.
00:45:00
Speaker
literally sort of throws everything out, literally everything out. The roadmap for life has gone, the spreadsheet for all the plans of life has gone and they need to start again. And that's what we're there for. We're there to help them start again, to kind of come to terms with the actual trauma of what they've been through and then start to put their life back together again. But put their life back together with this loss in it.
00:45:27
Speaker
not separate, which is what we instinctively want to do with something that's so devastating. We want to leave it over there. We want to park it and carry on. For years, that's what women have done. Women have been experiencing stillbirth forever. Most of the time, what they would do would just be to set it aside and go and have more children and pretend it hadn't happened. Very often, families didn't even know there was stillbirth in their families.
00:45:55
Speaker
This is something different. This is very much about, okay, let's embrace it. Let's embrace this loss. Let's see what we can learn from this experience. Let's see, how can we mature through actually living through and processing something so devastating? What resilience can we build? How can we grow from this? And not only that, and then how can we take this little life and carry it with us forever in as comfortable a way as possible?
00:46:23
Speaker
That's what Petals is about. And that's what we bring to the parents that we have the privilege of working with. And Karen, I know that you celebrated 10 years of Petals founding last year and 10 years of supporting families and parents like Alison Dave. What are your plans for the next few years? Are there any specific campaigns that you and your colleagues are currently working on that you would like to highlight?
00:46:48
Speaker
Well, the bit that is missing for me and that is my personal goal before I hang up my hat, which I'll have to do at some point, but I've kind of given myself another five years. But the bit that is really important is to get what we do evidenced.
00:47:07
Speaker
with a strong evidence base and so engaging in research, getting some good recognised researchers on board to take our model and to evaluate it, to test it, to be able to prove the difference that it makes and I personally think that's probably the missing link. If we can get that
00:47:28
Speaker
If we can get that strong evidence base, get the paper written that clearly states what petals are doing, then I think we might be able to sort of join the dots up within the NHS and create that care pathway. So that's where my main focus is. And I'm already working with some of the big research teams in the field to get some sort of project up and running over the next few years.
Future Goals and Career Reflections
00:47:51
Speaker
So there's a focus there. The other focus is to broaden out our offering, and this is one of our strategic aims, is not just to work with the NHS, but to actually engage with corporates. We are really keen to take our offering into the corporate world, as large companies are now thinking much more about how they support women.
00:48:12
Speaker
be it through supporting them in menopause, supporting them through fertility treatment, supporting them through miscarriage and other pregnancy losses, and ensuring they have the right leave and paid leave and all of those things. But what we want to be able to do is to take that a step further and say, well, okay, we can actually provide some support and you can commission us to provide a counselling service for your staff.
00:48:35
Speaker
And that I think is going to benefit the charity. It will take us into other realms beyond the NHS and enable us, I think, to not only expand our offering, but also generate more sustainable income for the charity as well.
00:48:53
Speaker
And Karen, I know that you have a big milestone birthday coming up and you're doing a bridge walk, I believe, to raise money for petals. So I know by the time this podcast comes out, that campaign would have ended, but I'd like to do a fundraising ask for you right now. So tell us, how can people support petals? Where can they go to donate and find out more about your work?
00:49:12
Speaker
Ah, thank you. I really appreciate that. So yes, if you go to our website, everything is there. It's petalscharity.org. And yes, it's very, very easy to donate to us through the website. I'm actually taking part in the London Bridges Walk on the night of September. And so you can sponsor me. There's a page there, a Just Giving page. Again, you can access through the website or through our social media. It's petalscharity. I'm not
00:49:37
Speaker
embarrassed to say it's my 60th birthday and I kind of really, really want to kind of make the most of it, show that there's still a fighting spirit within me and I can do this walk and I can get lots of support for it as well. So thank you, I really appreciate that.
00:49:53
Speaker
Great. We'll keep that webpage open, Karen. So when this podcast comes out in November, hopefully people can go on and sponsor you and we will include the links in the show notes as well. Thank you. So Karen, Alice, I always love hearing about people's personal journeys. And I know, Karen, you spoke a little bit at the beginning of this conversation about setting up petals, but tell us more about your background in your 60 years almost to date. What has led you to where you are today?
00:50:22
Speaker
I feel like my life's in two halves almost. So prior to having children, I was in a sales environment. I worked as an account manager for an office supplies business and I was kind of going around the country, mainly actually I was mainly around London and home counties.
00:50:40
Speaker
selling office furniture office quit all of these sorts of things it's an interesting one because i think i was a reasonably good sales woman but it was like my empathy this was my problem i couldn't i would i was with my customers too much so you know if they needed something want to something great but if i was trying to sell them something that i knew they didn't want really i just couldn't do it and so it was hard work and.
00:51:05
Speaker
When I had my children, I have two boys. In between my first and second child, I just thought, gosh, I've got to do something different here. I've got to do something more meaningful, because this isn't right. And so I thought, okay, let's take this superpower that I think I have, this empathy. Let's put it to good use. Let's go and train to be a counsellor. So that's what I did. And
00:51:26
Speaker
Certainly after I'd had my second child, I was properly sort of established in my counselling training and it was interesting. So in order to be able to pay for my counselling course, I took on a little delivery job and I used to deliver next parcels to people's houses in my local area.
00:51:44
Speaker
So I'd stick my children in the back of the car in the car seats and off we go, delivering next parcels. But that was the way I could justify and fund my counselling training. So yeah, that was kind of the journey that brought me to this. And gosh, thank goodness I took that step because as those months and years passed, it became really clear to me that that was what I was meant to be doing.
00:52:08
Speaker
Thank you, Karen. And Alice, I don't know if you also look at life in two halves, perhaps before Vera and after Vera, but reflect on your journey and where you are today and perhaps in which ways you are still involved with petals.
Life After Loss and Continuous Support
00:52:22
Speaker
Definitely, we have life pre-vira and post-vira. And my mum always says, if we look at photos of Dave and I pre-vira, our faces have changed. And not necessarily for the worst, but it's just different. Our smiles changed or our eyes have slightly changed. So we have the pre-vira. But also pre-vira, we didn't have children and we had no responsibilities and we loved to travel and we had fun. And then after varia, we had three boys very quickly. So now I feel like my fun life
00:52:50
Speaker
a bit on pause and we are so lucky to have what we have and we are so thankful but it's also really really hard and not very fun but we are feel like we're just slowly creeping out of the sleepless nights and into where the boys will play slightly more on their own.
00:53:10
Speaker
and we can look forward again, which we couldn't do for a long time. But like I said earlier, Petals is fully ingrained into our lives and we've done charity balls and things. My dad's running the Royal Parks in October to raise money. I think he's raised about $1,500 so far. So that's the thing as well. Petals is like a ripple effect. So my mum and dad talk as warmly about Karen and Petals as Dave and I do, even though they've only met Karen maybe once or twice because
00:53:40
Speaker
she is just part of our family petals is part of everything that we do and if my dad can't go to one of the football matches that he goes to and he'll say to his mate oh do you want my ticket and I say how much should we give you and he goes oh just put a bit of money into petals so like Karen said it is all word of mouth all of my pregnant friends I always say to them all the things you're not meant to say
00:54:01
Speaker
you're not meant to talk about stillbirth with pregnant friends, I talk about stillbirth with pregnant friends because I talk about you need to keep an eye on your movements but also if you have a look at petals, if they have a traumatic birth you need to go and look at petals. As soon as people tell me they're pregnant I'm like great that's amazing how far along are you? And sometimes they're 12 weeks but sometimes they're like oh I found out this morning and I'm like great because if something goes wrong we need to be here to support each other, we need to be here to be talking about it.
00:54:28
Speaker
So Petals is firmly engraved. And when Vera would be 10 in four years, we want to do something big. So that's going to tie in with your retirement, isn't it, Karen? So maybe we'll have to go double big. I don't know. But yeah, leave it with me. Leave it with me. It's so lovely because Alice speaks so brilliantly about how Petals has helped her and her family.
00:54:49
Speaker
But you know, there are hundreds of other parents out there who feel similarly and get involved with this in a similar way. And that is what Petals has become. It feels like it is so much more than the service that we provide. It is kind of like this big extended family of people who have experienced something that's quite unusual, but nevertheless have found sort of some sort of bond.
00:55:13
Speaker
through that process and through petals and through supporting petals can continue to kind of feel that connection. And Karen, looking back on your time as a leader since you founded Petals over a decade ago, is there any particular advice that you would give to yourself on day one of becoming a CEO?
00:55:33
Speaker
I think it would be be patient, because I think when I started, I was so driven. I'm still quite driven. But back then, I was so driven. And because to me, what I was trying to do made complete sense, it felt like a no brainer, I could not understand why everybody else didn't think that.
00:55:53
Speaker
And I would be quite pushy and I would get quite upset when funding applications didn't come through or people didn't respond to asks and things. I would take it quite personally and would have to pick my, you know, many times had to pick myself up off the floor thinking, you know, gosh, I can't do this. I can't keep taking these setbacks. My husband played a big part in that for me. You know, he would be there saying, come on, you haven't come this far to stop now. You can do this.
00:56:23
Speaker
So, I think that would be my message, just like be patient, you know, you're going to take some knocks, but you've got something that matters here. And so, yeah, just stay with that and keep going. And as the years go past, I'm a bit more realistic and a bit gentler with myself.
00:56:42
Speaker
Indeed. And Alice, adapting that question slightly for you, looking back on your journey, what advice would you give to yourself, reflecting back of when what happened with Vera happened?
00:56:55
Speaker
probably similar to Karen in that be patient and that you go through moments of you're desperate to move forward because you want it to get easier and you want it to be less painful but actually sitting with how you're feeling talking about how you're feeling and it's all about acceptance you don't want to accept that she's not here anymore even now
00:57:17
Speaker
But we do slowly do that. And although it's devastatingly sad, I'm lucky to love four beautiful children. Not many people get to say that. And I can say that lovingly with a smile on my face about all four of them because I had petals. So I just needed to be patient, accept the grief, allow the grief in, allow the grief to take over for a time.
00:57:46
Speaker
and then slowly work through and knowing that I'm here now with three beautifully irritating boys. I'm just really lucky. I'm just really lucky.
00:57:59
Speaker
Alice, Karen, thank you so much for sharing your experiences. I feel that this has been such an important conversation and hopefully you feel, Karen, a really important endorsement of Petal's work and everything that you have built. And as we come to a close now, what is one thing that you would like listeners to take away from this conversation and give us one final thought or reflection and Karen coming to you first and then Alice will give you the last word.
Encouraging Open Conversations
00:58:24
Speaker
I would say don't be afraid. Don't be afraid of baby loss. Please have the conversation. If you've experienced a loss yourself, dare to tell people, dare to share it. If you know somebody who's experienced a loss, walk towards it. Don't walk away. Thank you. And Alice?
00:58:42
Speaker
I'd say the same as Karen, if you lost a baby, talk about them as much as you can. And if you know someone who's lost their baby, ask them questions, ask them what they look like, ask them how much they weighed, ask them what their name is, just talk to them about them because we don't want them to be forgotten, ever.
00:59:03
Speaker
Alice, Karen, thank you so much. It's been a real pleasure having you on the show. Thank you, Divya. I really appreciate the opportunity. Thank you very much.
00:59:16
Speaker
Apologies for the sound issues in this episode, which unfortunately we were not able to remove post-production. I'm sure you'll all agree with me that the content of today's episode was too important not to include. The Charity CEO podcast will take a short break over the holiday season. We will be back to complete Season 5 early in the new year. Until then, stay safe, keep connected, and keep striving to make this world a better place.
00:59:41
Speaker
If you enjoyed the episode, we'd be thrilled if you could share the joy by leaving us a review on your favourite podcast platform. Tag us on Twitter, LinkedIn or Instagram. We'd love hearing from our listeners. To stay up to date with all our latest episodes, be sure to hit that subscribe button on your podcast app. And for even more resources and show details, head on over to our website, thecharityceo.com. There, you'll find information on past episodes and a place to submit ideas for future guests. Thank you for listening.
01:00:11
Speaker
you