18. Family Integrated Care - what do parents say?

Family Integrated Care makes a huge difference to families when their baby is in neonatal care. Today I am talking to Nadia Leake and Rachel Collum, two mums who have had babies in neonatal care, and are doing wonderful work in this area.

In a nutshell

“Parents and babies need each other and must stay together, with their relationship nurtured and supported from the very beginning throughout the neonatal experience and into the community.”

Family Integrated Care is the way forward! It has come such a long way since we included a scenario in our Whose Shoes ‘Nobody’s Patient’ resources back in 2016.

The  BAPM FICare framework has just been published.  

The 5 pillars run naturally through the podcast:

1. Partnership with parents
2. Empowerment
3. Education
4. Culture
5. Well-being

Lemon light bulbs  🍋💡🍋

Partnership with parents

• Parents should not need to ask for permission
• #ParentsNotVisitors
• Listen to parents. They know and love their own baby in a unique way
• Look beyond the  medical
• Work together to enable the parent to be the primary caregiver. This helps bonding and allows the baby’s’ brain and development to thrive

Empowerment 

• Move away from anything that assesses parents – feels judgemental. Offer proper support
• Trust – acknowledge parents as the experts in their child
• Respect the natural and what  parents bring to their children
• Little things are the big things – a fingerprint key fob to be admitted to the ward, rather than having to ask to visit your baby!

Education

• Community services – GPs, health visitors, families - need training and support to be able to understand and support families after a NICU experience
• Give parents the training they need to be able to thrive at home and look after their child, including necessary medical procedures

Culture

• NICU is the baby’s home - not the home we expected. Make it as homely as possible!
• Parents are not being ‘difficult’ when they ask questions !
• Peoples’ needs and preferences are very different – so before you do anything personal, like reading a story to the baby, ask the parents whether they would welcome this
• Work together to understand each other’s perspectives – what are people scared about, how can this be resolved?

Wellbeing

• Guilt. Mixed emotions. About everything. Unprepared
• Some trauma is inevitable – focus on the areas of avoidable trauma - good communication & helping parents do everything to bond with their babies

Other resources

Whose Shoes - an overview

 #MatExp

Posttraumatic Stress Disorder in Parents of Premature Birth Neonates.

 Evaluating the effect of FICare on maternal stress and anxiety in neonatal intensive care units. 

Bliss mental health

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Transcript

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SUMMARY KEYWORDS

parents, baby, home, child, neonatal,  understand, integrated, GP, care, NICU, mum, helping, people, healthcare professionals, nurses

SPEAKERS
Gill Phillips, Rachel Collum, Nadia Leake

 Gill Phillips  00:11
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 healthcare, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you.

 Gill Phillips  00:45
Today's podcast is a topic I've wanted to introduce right from beginning of this podcast series, as it's very close to my heart. Family integrated care makes such a difference to families, when their baby is in neonatal care. I didn't really know how to go about it, as I know such an amazing network of people working in this area. And I wanted to ask them all onto the podcast. But I only do one episode a week and there are lots of other topics to cover too. Anyway, the dilemma solved itself last week when an exciting opportunity came up, which we were all talking about, and then it naturally morphed into doing a podcast NOW and further episodes in the future, as there are so many different aspects and things are moving so fast. So the conclusion was, let's just jump in and see where it leads. Emails and tweets have been pinging back and forward. There's so much energy and so many wonderful people making a difference. And of course, it's usually best to start with the people with the lived experience, in this case, the parents. So today I'm delighted to welcome Nadia Leake and Rachel Collum, two mums who have had babies in neonatal care, and are doing amazing work in this area. So welcome, Rachel and Nadia, where shall we start?

 Nadia Leake  02:06
Hi morning, Gill. Hi, Rachel. Great to be here. And I think as you say that parent perspective throughout Family Integrated Careis not only the important one, how can you possibly understand how it feels to be somebody else without listening, but I keep seeing messages on Twitter, etc, about how many parents are driving forward the need for Family Integrated Care, coming up with ideas, and really making that change in the model of care across the UK. So, it is great to be here. And thank you for inviting us for this first podcast on Family Integrated Care. Where to start, you know, I had this thought while we're in neonatal care with Harrison, that every time I walked into where his incubator was that we were walking into his bedroom, that was his space, that was our home. So although our ideal would have been to deliver our twin boys and go home and have the balloons and the congratulations cards, for us, and anybody whose family ends up in neonatal care, that's not what happens. You know, your home, your family, your child's bedroom, the nursery you'd lovingly prepared, if you had a chance to, it's a neonatal ward, it's an incubator, and you're surrounded by people. So that was my first thought when I considered family integrative care and the importance of it, and it's closing the gap between what you'd hoped for and what you end up with, if you are admitted to a neonatal unit with your child or children. Rachel?

 Rachel Collum  03:37
Yeah, I think that thing about home is exactly it - bang on. Especially if it's your first baby, you've got all these ideas about what maternity leave is going to look like and exactly what you said, that whole kind of bringing home pink or blue balloons, and all these daft little things that the textbooks are full of about, welcoming a new baby. How many textbooks talk about what if your baby is premature? Or what if your baby is poorly. So you're so unprepared. And, of course, you don't want to tell parents about all the things that can go wrong when they're pregnant. But it means you're thrown into this world that you just didn't expect. And I think there is a sense of disappointment and coming from that as a sense of guilt. Because you're disappointed you didn't have the start with your baby you wanted but then you feel guilty. At least you've, you know, you've still got a baby there. So it's really mixed emotions. And I think a big part of family integrated care is about creating that environment on the neonatal unit that is as close to home and all of those things as possible, which is never going to be close. But it's all those things like having somewhere to sit with baby and feeling like you're a bit in control of the things in the same way you would at home. We'll probably talk more about those specific things in a bit, but yeah, I think it is that … being thrown into a world that you never thought you were going to be in. That is the starting point of the neonatal journey.

 Gill Phillips  05:10
I think that's an incredibly powerful start. Is it worth us explaining to people what family integrated care is because that's a term that I like it, because it, it seems as if it means something, whereas some terms don't. But perhaps talk a bit more about what it really does mean and perhaps what it means for you.

 Nadia Leake  05:31
Yea, I'll go with that, I think family integrated care if you look at the definition, if you like, or what the back end framework says the British Association of Perinatal Medicine (BAPM) have created a framework for family integrated care, which we're abbreviating to FIcare and pretty much is used around the world. It talks about having parents as a primary caregiver to their child. So this really is an extension from family-centred care, which is very much the model of care practice throughout the UK. And many places have moved into family integrated care. But the big difference there is that the parents are that primary caregiver, and that the love and the nurture, the type of bonding that is required for the baby's brain development is given the space and opportunity to thrive. And that can only happen with the support of the healthcare professionals on that unit. Because so much of the medicalisation of your family is due to the processes and the protocols which are necessary, right? We've never questioned the medical care that our children have received. It's just how can we parent, because that's the bit that helps our babies to thrive and helps us to thrive. It helps with breast milk. And we know the value of breast milk for these tiny, tiny babies. So family integrated care in a nutshell, is about parents being primary caregivers, to their children, and an ethos, a culture on that neonatal unit that support that bonding and family.

 Rachel Collum  06:57
Yeah, I see a lot the hashtag on Twitter now … #ParentsNotVisitors. And I think that is the crux of FICare. You don't want to feel like a visitor coming to see a baby that doesn't really belong to you. And I think a lot of the NICU environment … there are ways it is set up. That that is a barrier. So most NICU units for security, you have to buzz and wait for somebody to let you in. And I think for maybe two weeks after our little one was born. I was saying, “I'm here to see”, rather than, “I'm such and such's mum”. And I think that change in language took a good two or three weeks because you do feel like you're there to see them rather than you're there to be with them or, or your a complete part of that unit. And things like that. There are ways of getting round, which I think are slowly, slowly come into force - things like having a fingerprint to get onto the unit instead of having to wait and someone let you in. It's a really simple thing, but it makes a massive, massive difference to families. Yeah, I think it's about feeling like mum and dad basically, and not just someone on the side.

 Gill Phillips  08:06
And I think this is where Twitter can really help. I mean, something like that. #ParentsNotVisitors. It's so self explanatory, isn't it? And I don't know if you know, we had a poem as part of Whose Shoes - 'Theoretical Mummy', I think, you know, some of these different methods get the point across very well. And in terms of you know, as you've explained so well, feeling like a mum - what helps people in that situation, ideally as quickly as possible, immediately feel like a mum.

 Nadia Leake  08:38
So our experience is interesting. And this is what got me into  Family Integrated Care and understanding the importance of it, just simply because we had our babies, and we were in one unit for 10 weeks, which was a very FICare rich environment. And we went to another unit for about another 10 weeks, which was family-centred care, but wasn't as strong in family integrated care as it is now and it's still developing. So I had experience immediately what it felt like to be a parent in that family integrated care environment versus not. So to answer the question for me, and being able to compare and contrast the two, I can say that feeling like a parent on a neonatal unit was being completely involved in all of the decision making, the medical care when something was going to happen. There was almost nothing that happened with either of my children that I wasn't completely aware of, involved in, and a part of that decision-making team. And I even remember one day one of the doctors wanted to reduce a drug that was helping to remove the excess water from Harrison's body. He was suffering. He had a hole in the heart and he wasn't clearing liquids. And she said she wanted to reduce the medicine. I said, No, it's not working. It hasn't made that big of a difference. If we reduce it now then what? She said okay, we'll keep going You know, and I just can't imagine that conversation in the other hospital we went to. So being that trusted, and actually acknowledged as being the expert in my child, I watched these children, the two of them for a while, morning, noon and night. So I could see no, it wasn't making any difference, there's been no improvement in him clinically. And being trusted and being equal members of the medical team for my child's care made me feel like a parent. Because if you had a one year old, two year old, you wouldn't send them to the GP by themselves. The GP would expect you to know what was going on with your child. And the same should been in neonatal care. And that's what family integrated care is about. That's what helped me to feel like a parent.

 Rachel Collum  10:40
Yeah, it's about not having to ask, isn't it? .Not feeling like you're asking permission, or you need to ask what's going on? And actually, staff asking you, and exactly what you said, the vast majority of parents or at least pre COVID, are spending 10, 12, 15 hours sitting next to their baby's beds, the parent knows the baby better than any member of staff, because a parent's shift, if you want to put it that way, is is longer than any member of staff. They know all their little, like quibbles, they can tell when they're in pain, they can ... they just know baby best. So for staff to appreciate that and ask mum or dad, or even if it's grandma, whoever it might be that's spending all of the time next to the baby. What do you think, what do you think is up? Or do you think baby likes this? Do you think baby is comfortable? I think it's that because exactly what Nadia said if you took your slightly older child to a GP, they're not gonna start guessing without having any information from mum or dad. They ... that's the source of information. And I think yeah, the having to ask, what feels like permission for things when you're on the NICU, is the thing that stops you feeling like the parent, because again, at home, you wouldn't be asking anyone, would you, can I bath baby now? Is it time to feed baby now? Am I allowed to nap? You just don't do that at home. But on the NICU you, because of a lot of the logistics and practical things, you do have to fit in with the nursing team or with the consultants. And again, that's another thing that you wouldn't have in your home environment that makes you feel less like a parent, I think.

 Gill Phillips  12:20
And I think picking up on what you said there, as well as being a parent, there's building confidence, isn't it? Because at the end of the day, you're the one that's going to take the baby home, your baby, you're the one who's going to feed that baby, look after that baby, know when something's wrong, take it to the GP being able to talk sensibly about what's going on and what's happening. And if you just get sent home with this hospital baby, how does that feel for people?

 Rachel Collum  12:46
Yeah, there's a lot of work done on around that at the minute as well, some really good work looking at that transition to home. Exactly what you said, like on the NICU everything is so routinised ... you change her nappy every four hours, they have a feed until nearly they come home sort of every four hours, everything's on the clock. Then you get home. Nothing is on the clock, it all goes out the window. And there's a massive shock of it, especially if you're a new mum and your whole experience has been this kind of routinised way of doing things. And you're right, I think when you're in the NICU, because you know there is a team around you, if you're worried about anything or something doesn't seem right, you can just literally grab a member of staff and ask them. And then if your child doesn't have a lot of medical needs when you go home, it's just the health visit or in the GP, you suddenly lose that team. And I think that is a massive, massive shift. So the more confident you can help parents to feel while they're on the unit, the smoother that transition to home is and the less anxiety provoking it is, I think.

 Nadia Leake  13:52
Yeah, I agree with that. And I think our transition to home was managed really quite well. I remember when Harrison's consultant first said, "Oh, you could be going home soon" and I swore, I won't lie. I thought, oh my gosh. And I thought, you know, we're not, we're not ready. But every moment after that it really was about making us feel confident, and that we could do this and it was preparation for home. And I think it probably was two and a half, three weeks in total that preparation. And, while this is with a medically stable child, I remember thinking why weren't we doing this stuff weeks ago, some of it. So there was care there around giving us confidence to bring him home. And I felt supported as much as possible once we were at home by the unit still and also by the community team, but there was a lack of understanding still around what it feels like when you come home. Because with our experience being so long, it was nearly five months, there was so many bottled up emotions that then spilled over once I came home. And I'd been so proud of my ability to get the milk going and maintain it, expressing milk for nearly six months, when we came home, the stress of it meant all my milk dried up. So that was again, just more heartbreak about coming home... And I hadn't done anything different. It was just stress. So, you know, my GP was great about that, and helped me to get going again. But that transition home, the need for additional support really is being worked on now. There is so much being done around transitional care. But that starts to now feed back right to the start. When does Transitional Care start and you'll hear healthcare professionals talk about discharge planning at the point of admission. And I think that needs to be more the case with family integrated care and babies on a neonatal unit. Let's get those parents absolutely ready and being parents to their children as soon as possible.

Rachel Collum  15:58
And actually going home, either permanently, very sadly, or temporarily without your baby. I remember when, the first day I was discharged from hospital because I was in for no time at all, going home. And then our baby was still in the hospital and as if you ever think that is going to be a situation you find yourself in. And then now obviously, for parents whose babies pass away, I mean, I can't even comprehend what that feels like. But get helping to support parents through that as early as possible. And if you know that something that potentially might happen, helping prepare them as best you can for that, I think, because there's a lot of, like you said Nadia, there's so many emotions, and while you're in the NICU, you're just on a high like you fire on adrenaline every day, you're in like a permanent state of fight or flight. So when you come home, like exactly what Nadia said, suddenly, you've got all these emotions, and you've actually, for the first time, got a second to think about what you've just been through. And that can be really, really stressful for parents. And I know there's a lot of research looking at Post Traumatic Stress Disorder in parents who've left the NICU. And the statistics show … it pervades for like six months, a year, a year and a half in some cases. And I think it is because of that, because you're just in it, you deal with it. I guess there's a lot of expectation on you as mum to just get on with it. And you've got to be strong for your baby. And that's your job. And in a world where you maybe can't do everything you wanted for your baby, the one thing you can do is be there for them and be that strong person. And then when you get home, I think what do you do with all of that emotion? And I think yeah, definitely more around that and understanding what that looks like for parents, whether their baby is healthy or has medical needs or whatever it might be, is really, really important.

 Nadia Leake  17:53
I had a conversation recently with a consultant in America, actually. And she'd asked the question on Twitter, we've caught up since, of what does wellness look like on a neonatal unit for parents and well being. And for me, it was like zero separation. Give me my baby, let me parent my baby. And to pick up on Rachel's point about PTSD. It was, it was a figure that struck me many years ago when I was, when I was first asked to speak about something and then just doing a bit of research for the book, that, in the Bliss mental health report, 60% of parents were diagnosed with PTSD following a neonatal stay. So I was looking for information that kind of contrasted that or just put it into context. And the same year, 2018, King's College London conducted a study where 17% of those who've been in combat operations in Afghanistan, reported symptoms of PTSD. So if you're looking at a war zone compared to neonatal care, you've got people coming out with nightmares, hallucination, flashbacks. All of these things I experienced following our neonatal experience. And so my question is, how does family integrated care start to reduce the risk of trauma? Now, there are some things which are completely unavoidable. You know, one of our twins died, it was unavoidable. He died, He was very small. And Harrison needed heart surgery and the process of getting him to the heart surgery was just about the most stressful thing I've ever experienced, but it was unavoidable. So some of the trauma that is caused by the avoidable hurt, and that's where family integrated care comes in. There are things the communication, the ability to bond with your child, are those avoidable sources of stress and pain, that family integrated care really supports and may well reduce, that long term effect of stress and, and pain, really down the line.

 Gill Phillips  19:47
That's such a strong concept, isn't it 'avoidable'? I think this is the story of so much of the work that I do that medically, things are really, really amazing. And there's nothing to fault, but it's the softer things, the experience things, the things that, you know, just what you've just said, communication and language and being involved and feeling included, and the fingerprint, you know, all of these things that in themselves, you know, it's the little things are the big things isn't it? Coming back to ... I mean I was interested Nadia that you said about the problems of coming back home. And, you know, breastfeeding after all that time that you then had problems with, and that the GP was supportive. So that was mentioned in passing, but we talked about how people can support you coming up to your discharge while you're in hospital. What about the GP and the community role and the health visitors, and is that part of family integrated care?

 Nadia Leake  20:44
100%, I think. We'll start with the health visitors, actually, because our experience there was interesting as well. And there has been some work from the Institute of Health Visiting, looking at how to upskill their teams across the UK. So the experience there was, as you can imagine, this was nine years ago, Harrison came home, right? There wasn't the understanding around prematurity, especially not THAT Prem. Right. He was 17 weeks plus early. So our health visitor didn't have the experience or knowledge around how to support us, we learned together and she was open to getting to know us and understanding and was instrumental in Harrison receiving the additional care he still has now, back in the day. But, those initial weeks at home, I would say the health visitor did not have a clue how to help us. The GP did not have a clue really how to help us. I phoned up about the breast milk and said I need this drug. And I told her what it was and I spelt it down the phone. And I said I would come in and collect my prescription because that will get my milk going. So supportive is an interesting term. For that, I think she listened, which was important. Conversely, when I went to her many months after being home with Harrison, and I tried to explain this ball of stress and anxiety and guilt and this horrible, oppressive feeling that weighed me down daily, she said, "Oh, well your baby died". I said, yeah, this isn't bereavement. I'm dealing with the bereavement actually, it's the rest. It was the NICU experience, and watching trauma after trauma for Harrison. So from the needle, the pricks, the bloodletting, the eye examinations, you name it, the intubation, the extubation, the resuscitation, this child went through everything. And we stood and watched it all. So that was the issue, and that's the bit that I think isn't dealt with so well. This almost indefinable, this undefined, long term anxiety and stress and, not quite depression, but this weight that you carry after a NICU experience, that's the bit that community could help with so much more.

Rachel Collum  23:10
It's like when you just reel off that list of things, Nadia, imagine, as a new pregnant mum, if someone told you, these are the things that you're going to experience in your first few weeks, months of your baby's life, I mean,  I don't even know how you would deal with that, knowing that was to come. But when you're in it, you do exactly what you said, you stand and you watch it. And because you know you have to be there for your baby. And we had a couple of awful days. And he wasn't even that ill but he had to have a transfusion, which on the NICU is fairly commonplace. And again, if you told a new parent that, they'd probably have a very different view as to how common, you know, easy to deal with that was, but you're talking about these teeny tiny veins and having to cannulate and then you find yourself in a position, and again this is really to do with FICare, where you ... well, there's a lot of individual difference, but most parents want to be holding their baby's hand or finger or having their arm on them, whatever it is, while they're going through these awful, painful procedures. And in some scenarios, they're not actually given that option, like parents will be asked to leave the room while these medical procedures are taking place. And I know I've heard Nadia talk before about the fact that if this is a really complex procedure, that could be the last time you can be with your baby, then do you really want to be stood outside the room or do you want to be stood with your baby? So these are massive, massive things, but then, like Nadia says, seeing all of that is traumatic. And I think it takes a few months, and for you to be out of it and back home, before you realise just how traumatic it is and start processing that. So I think, again, that follow up care is so important. And for health visitors to recognise this isn't postnatal depression, or at least it might be wrapped up as a part of postnatal depression, but these are much more specific issues to do with the NICU that need addressing. Because it's not that you're just a bit miserable when you got home, or you've got some sort of biological imbalance in your brain because of the hormones, it's because of the trauma of being on the neonatal unit. And addressing those two things. I think pulling that apart is really important. But I think our health visitor was similarly to Nadia and ours was, in the last four years, just didn't really know what prematurity looked like or was, and Nadia mentioned that neonatal training ... so there's really good training happening with health visitors to sort of teach them some of the medics and facts about premature babies and the kind of common issues they might have when they come home, but also trying to get them to have an understanding of this kind of stuff. Like what it's like for a parent who's been on the NICU. When we came home, our health visitor kind of worried that I wasn't taking my little one out for walks and sort of tried to encourage me to go out for walks. And I was … I have dreamt of sitting on the sofa cuddling my baby for 10 weeks, I don't want to take him for a walk, I want to have the cuddles I've been dreaming of. So it's that understanding of how the needs and wants of a parent who's been through the NICU might actually be very different from a parent who's come home with a healthy full term baby. So there is good work going on. I think there needs to be a lot more work. But it's definitely going in the right direction.

 Nadia Leake  26:39
Yeah, we had a similar, and quite funny to look back on, comment from my health visitor during her first visit to our home. "Do you know, there's so many things you can do with baby", bearing in mind it was December, and he wasn't, you know, he was due to be born in December. He was born in August, we had a very, very tiny baby still at home. And she said, "Oh, you know, we should go to walks and you can go to the sensory rooms and you could take him swimming". And I said you mean scuba diving, right? Because he's on oxygen. There was no tailoring whatsoever to the needs of a parent whose child was born prematurely, or to that baby. And it's just that understanding of the medical vulnerability still, of these tiny babies during flu, winter season, bronchiolitis, RSV. That means, actually, these things are not suitable for us. They're not suitable for our child. So it is about tailoring, and that actually brings me back to the neonatal unit itself, you know, being told go for walk, go outside. Which parent walks away from their newborn? You know, even when you have a term, well, baby, I've seen my friends who have got little ones and they can't take their eyes off their babies, they're glued to them. Because that's just natural. And that's all we're asking for. And that's what family integrated care is, let's respect the natural and what we bring as mothers and fathers to our children, which is maybe undefinable. And I always contrast motherhood, fatherhood, to breast milk, where breast milk is lauded. And everyone knows how important it is, you know, this liquid gold, this life saving gold, because it can be analysed and quantified and you can make sense of it. I think until the day we can analyse and quantify motherhood, and fatherhood, how do we put the right value on it. That may never come but we need to understand as human beings this is the most important relationship we have.

Gill Phillips  28:32
But I think those examples that you've given come as close as you can to quantify motherhood and fatherhood, just those little examples that people can think, oh yes, you know, obviously,

Nadia Leake  28:44
You do. And I think one of the moments I had with Harrison was wanting to pick him up. So Rachel talked about not having to ask permission and some things, okay, we've got medically unstable children, okay, medical needs first, as no point harming your child. But once we're in a position to work together with our medical partners on this, let's do everything we can to support that parent. I'd wanted to pick him up. And I did ask "Can I pick him up?". And basically she said, "No". I won't go into that. But what it really made me think was, you know, there's no other way, nobody else picks up a child the way a parent picks up their child with ... it's not about the care or the carefulness. It's the love in your eyes and in your heart and that swell, that ... the closest thing must be being a grandparent, you know, where you pick up a little baby and you think "I've got your darling, and I will keep you safe, and you'll be fine with me".

 Gill Phillips  29:41
Absolutely.

 Rachel Collum  29:43
Yeah, there were little things on the unit as well. And, you can't be there 24/7. If you could, you would, but you physically can't they run ... well, some NICUs now have but the unit we were on didn't have beds. And actually, there wasn't even the right number of chairs for all of the parents on the unit, so you couldn't even sit in a reclining chair, with everybody on the ward. And you weren't allowed, again that word allowed, to sleep in the chair next to your baby. So I mean, you physically, unless you're some superhuman robot, you couldn't stay on the unit 24/7. So at some point, you have to leave, which again, like Nadia said, what parent just rocks off for the night and leaves their baby away from them, no one chooses to do this. And there was a wonderful nurse on our unit, who used to read stories to our little one while he was asleep. And she asked if we wanted that to happen, which I think is key because I'd spoken to some other parents on the unit and I'd told them that she was doing that and they were a bit horrified and was like, well, that's my job. So I think it is a very personal preference as to what kind of roles like that you want the nurses to get involved in. But we really loved that, because it meant someone was doing the things we would have chosen to do, but just could not be there to do. And again, it's a simple thing. And that's not medical, is it reading a book? that's got nothing to do with medicine. That's the additional stuff. And obviously, again, there are constraints and logistics. And if other babies needed medical attention, of course, that night he wouldn't get a story because you have to have priorities. But the fact that if they could do it, they did. I think that made a real, real big difference.

 Gill Phillips  31:25
So you've got different members of staff, different attitudes, different skills and talents, different levels of trust.

 Nadia Leake  31:35
So I think this is commonplace. And you'll hear parents say this, I think still now. We're all human beings, right. So this may be some people you want to more than others. Or you do have the difference, in practice. You have that individual healthcare professional's level of confidence with what they're doing as well. So you'll hear parents say that, quite often, the day they would have with their child would be dependent upon who was in charge, or which nurse was responsible for your baby that day. If one of them was more open to you picking your baby up, then maybe you could. If another one, maybe less experienced, thought no, that's not how I was trained, then that wouldn't happen. Then you have people who are more willing to question the unwritten rules or protocols on the unit to accommodate your needs as a parent. So there's definitely still a variety of responses you can get when there's something you would like with your child. We're lucky, every region now has got PAGs with quite new parents who have come off of wards and joined the PAG. So we're speaking really of something that still happens. Okay, so our experience was some time ago. Rachel's coming to four years now since, but we have parents that we speak to who say, "Oh, gosh, that happened to us. Did that happen to you nine years ago?". Yeah. You know, but I truly believe we're getting there. And the point again, of family integrated care, is that standardisation so that you can have confidence and you can have some certainty of what's going to happen during the day. Because not knowing is also really stressful. Not knowing who ... you know, I've walked onto the ward and seeing who was looking after the child, and went oh man. You know, and had to steal myself to put a smile back on and say "Morning", when my heart was sinking. Like, here we go. There's goes our day. It's an important aspect of family integrated care and neonatal care is acknowledged and there's certainly work now and the northwest, they're doing amazing work. They've got a family integrated care accreditation scheme for their 22 hospitals across the ODA. So seeing that type of thing, I know Wales have got an all Wales programme. There are other neonatal networks. We're very much ... there's a network approach to family integrated care. So this shouldn't be that level of difference between hospitals and certainly not within a unit. We're definitely getting there, there's just work to do in pockets of improvement still.

 Rachel Collum  34:07
Yeah, I think that kind of nurse lottery is something that, hopefully all of this work around FICare, will gradually reduce and I think it's not like it's a particular type of nurse. So it's not like all older nurses or nurses who were trained at X institution or whatever, I think it is just some that really get FICare and others that maybe don't or have been doing the job so long that it is a really difficult shift for them because it is a whole different way of working. Like asking mum and dad, you know, what do you think is up with baby today? Or how do you think baby has been like this morning and allowing, again that word, but allowing parents to be more involved in what I suppose have been considered medical routines. So on the unit, we could take temperatures but, quite often, a nurse would then take the temperature after you, just to double check. So it undermined the whole 'we trust you as a parent' thing. And again, I guess maybe there's an argument for that because obviously, if a baby has a raised temperature, that can be a marker for infection, which you need to get really early. But if you are just putting a prong under baby's arm, can you do that wrong? Or when you get baby home, you're probably gonna do that, right. So it's those little things. And again, like giving certain medications down the tube, we were able to do but not other medications. But you know, they've all been measured out and they all just go down the tubes. So I never really understood what we were allowed to do and what we weren't and what the reasoning was. And I think that's ... that could make a big difference. Just having someone explained to you, "Well, we can't let you give this medication because if you give even a drop too much it can have really significant effects" or whatever it might be. Just knowing the reasoning for a lot of things would help. I never understood the rationale for the whole 'you can't sleep in the chair next to your baby' thing, I've never understood that. I can understand holding your baby, you're not meant to be going to sleep because that could be dangerous. But at home, you would nap next to your baby. And I've never ... and that probably is one that's bugged me the most because I never have understood what the reasoning was. Was it just a practical thing that there weren't enough chairs, was it that we were in the way of nurses needing to do procedures, but having a bit more information about that would have helped us feel more empowered. And then I think, if we didn't agree with that rationale would have enabled us to challenge it and have conversations around it. But if you're in the dark about why these things exist, you've got nothing that you can base your conversations on. So I think yeah, very often just having things explained, would have made a big difference as well.

 Nadia Leake  37:00
I think the point you make there, Rachel, about knowing what's going on, because that in itself is a source of stress. It was for me, not knowing why or being fobbed off, you know, all I'm asking is to be given space to parent my child. I don't think I should be fobbed off about that. Or help me understand why. If I understand the rationale, I can walk away with that easy, but it's all these little things that then build up, build up, build up. And, if you like, put layers between parenting and increase the separation between you and your child, when all of the activities you wanted to do is to reduce the separation between you and your child. So anything that takes away from that will just help me understand it because this is a big deal. You know, if we're talking about how I bond with my baby in this environment, in this alien, non home-like environment, I think you're right, we have the right to have that explained or just help me understand. And I can sleep a bit easier tonight.

 Rachel Collum  38:04
Exactly. And this label of 'difficult parent' as well that I've heard mentioned quite a few times in different contexts. That is probably my biggest bugbear … a parent who asks questions, because they want information and they want to understand what you were doing to their brand new baby, is not a difficult parent. That is a parent who cares about their baby. That is a parent who has the right to know what you're doing to their most prized … possession. Possession is not the right word, but it's not difficult. I could rant about this for hours and I think it's that ... it's helping staff and professionals to understand or take a minute to put themselves in the parents' shoes of what it must feel like to not know why a needle has been inserted or to not know why the oxygen levels had to go up, to be told "No you can't have a cuddle today" when that's the one thing that they can do to really bond with their child and that keeps you going through the days. Like those cuddles are everything when you're on the NICU because that's it, that's what you've got to be with your child. So, I think, yeah, this idea that you're a difficult parent, because you ask for things or because you challenge things or want to know things is ... It's the culture that really needs to change around that. And I think FICare is all about helping professionals understand why parents ask these questions or how parents feel in that situation. I know, I've spoken to a couple of neonatal nurses who've had premature or poorly babies themselves, and they have all said it completely changed their perspective on things. And they've actually gone back to work as, like in their words, kind of different nurses, because they feel like they've got so much more empathy and understanding of what it feels to be like on the other side. And obviously, you don't wish that neonatal professionals go through that experience. But just maybe talking more to parents and spending more time listening to people who've been through it, I think could really help that as well.

 Nadia Leake  40:18
I agree with you. Where I have a different thought, though is ... We've had many, many, many years now of parents saying how it feels. And I still feel there is some disconnect, that we don't fully understand, you know, how does it feel to be a healthcare professional being asked to implement family integrated care? Does it feel dangerous? Does it feel … actually I've got these parents picking up their baby when they want and let's go to the extreme here, you know, and just deciding to turn the oxygen up or down, does that put this baby maybe in danger? This is my job. This is my responsibility. This is what I've trained for. So I think ... and you know, Nikki Crowley, did a great piece of work for her Darzi fellowship, where she did ask the healthcare professionals at the hospital, what are your needs, wants and fears around implementing family integrated care? So when you see some of that feedback, and it's talking about there might be a slip of standards. How do we know what's happening all of the time? Is it going to make our jobs harder? Are we gonna have to explain everything? So when you hear that type of feedback, I think, yes, we can still explain what it feels like to be a parent on a neonatal unit, but we've been doing that a lot. I think there's a step forward now. Let's understand what it feels like to be a healthcare professional on a neonatal unit, and support that learning as well, from an emotional point of view. You know, because if something feels like it's going to be difficult, why would you do it?

 Gill Phillips  41:48
And I guess this is where our Whose Shoes work comes in, because people think it's about putting yourself in the shoes of the people, the parents, the patients, but it's about, really everybody, every which way understanding other people's points of view. So exactly what you've just said there, that family integrated care. If you explain it to a lay person and think well, that makes sense.  Then you could think, well, what's the problem, but it's digging into that, isn't it, all those professional standards, and medical learning and communication using certain language and not other language is a big, big shift for people to make, and to understand that then puts everybody in the same place, working together, rather than perhaps being defensive. 

Rachel Collum  42:35
It links to the confidence of parents thing as well, because some of those points Nadia was making there if, like, the oxygen, okay is an extreme example, but can the parent just decide what oxygen level a baby needs? Probably not, because they need the medical training, they need an understanding, but can a parent decide when to give their baby a bath? Probably more so, if they have the right information. So if they understand that they need to regulate the baby's body temperature, and the wrapping is really important. And if they're shown how they can do that safely, then probably that is something that they could actually just decide it's bath time for baby and get everything themselves. And that's something that probably there's lower risk of than anything that does involve oxygen or medication. So I guess in understanding the fears of the medical professionals, we could work out which things they're less worried about. And of those things, which things is it to do with their trust in parents doing it right, and we could actually then help the parents to do it right through training. Because like I mentioned before, you're on that unit for so many hours in a day. You don't want to spend a lot of that time away from baby but maybe for half an hour here or there, you might be amenable to going with some other mums and dads and learning how to wrap baby during bath time or how to give medication or whatever it might be. Especially if that means you can do more of it and you can feel more like a parent. So I think linking those two things together to think about what training we can provide for parents would really help to make some practical inroads into FICare and how it happens. 

Nadia Leake  44:16
Yeah, yeah,  totally agreed. I think this is where the BAPM framework brings in so many ... I keep hearing the same words. So you know, everything's on the right page, we're all on the same page, and trying to move this forward. And if you think about the five pillars of the BAPM FICare framework, you've got that empowerment, Rachel, is what you're talking about education, and that's a key pillar, and family integrated care, and implementing it in a sustainable way. Educate everybody, make sure everybody is empowered to implement family integrated care, and to really drive that bonding between parents and their children or carers and their children. The BAPM framework talks about partnership with parents that, again, is what you're saying, how do we do this together? It's not our environment, it's the healthcare professionals environment, when you think about it, as much as I thought that was our bedroom, or an extension of our home, it's their environment. How do we make the environment conducive to family integrated care. Culture, you've mentioned, Rachel, well being I mentioned right at the start, because that trauma and stress that continues for years after is something that we can, again, using the term, we can avoid, where possible, just through education and working together. So it's good to hear really just in our randomly formed conversation that we have picked out those five pillars of the BAPM framework. And that's something that Nikki and some of the healthcare professionals, maybe will talk about down the line. But they really are, for me, the five key things if we can partner, right in the centre of everything, partner with healthcare professionals, and have that two way understanding. So that's something I'll be doing a bit of research on in the coming years just have that two way understanding of what's important to healthcare professionals, when they're being asked to implement family integrated care, it's more likely to happen.

 Rachel Collum  46:03
Yeah, and things like burnout as well. I've seen a lot about that from the neonatal nurses association recently. And like just how stressful COVID has been for neonatal staff dealing with so many changes, regulations. And the vast majority of those people have actually felt quite heartbroken that parents haven't been able to come on the unit. So they don't want that. And they know from all of their training, the developmental and sensory impacts not having parents around is going to have on babies, like it's just going to be ... just don't even want to think about it. And then neonatal staff have gone into that profession because they want to see babies thrive, and they want to send healthy babies home. And I think as a parent, I mean, I haven't been on a neonatal unit during COVID. And I probably can't imagine what it's like to a large extent. But probably all you see is being told No, you can't come into visit. No, you can't touch baby, you need to wear all this PPE, sorry, we know it means you can't really bond very well with baby. But this is how it is. But I guess they've done the best they can in what's essentially an impossible situation. But again, I think helping parents understand why all of these rules have existed will go some way to maybe buffering it slightly. And I think you're never, with COVID, you're never going to be in a situation where parents are happy with the way things are. Because things are just terrible. There's no other way of looking at it. But I think it's that understanding a little bit. Yeah. 

Gill Phillips  47:38
So oh, my goodness, there's a whole extra dimension there, obviously with COVID. I think we can't go there, at the moment. It might be that for another episode, we could get some parents who've actually had that experience. Wouldn't that be amazing? But I think to try and tie up the session today, which has been amazing and I think has started our conversation so well. Flo and I are doing a coproduction session for NHS England called Shine A Light on Coproduction. So have you got any examples. I mean, just something simple that we could perhaps include as a clip, as what is coproduction with parents, just a vibrant example of a couple of things that you're doing or that might work.

 Rachel Collum  48:20
And we've got some really great work happening at the minute to our Parent Advisory Group in the Northeast. I think that's pretty much what the group is about, really. So we're very lucky that the care coordinators who we work with, absolutely want to know what parents not just think but what ideas they have and what they would like to see happening on the units. So they will often bring us, I guess, a problem or an issue that they've seen parents struggling with who are currently on the unit. And then they've basically asked us to run with it. So we'll have brainstorming sessions of things that we experienced. And that's nice as well because there's so many different perspectives on the parent group. So you've got some people whose babies have left the unit very recently, others who were there during COVID. You've got some whose babies came home perfectly healthy, others who babies came home with more complex needs. We've got parents of multiples, I think we've got one set of parents whose baby sadly died. So you've got so many different perspectives. And we really work with the care coordinators. And it's not a tick box, naturally, I would say, we tell them what we would like to see happen, and they really take it on board. So from that we've developed, it's currently in progress, we're developing what's been called a parent passport, which is the idea that when you come home, there are certain things you want to feel confident or empowered to do with your baby. There's been a lot of different iterations of these kind of booklets or leaflets for coming home within the past, and they've been quite heavily competency based. So it's almost like a tick box kind of discharge thing. You know, can mum feed baby, can mum keep baby warm, Does mom know who to contact if baby's not breathing, this kind of thing. The feedback from the parent group has really been about moving away from that idea of competency, which feels quite judgmental when you're a parent and again, is about almost like, are you capable of looking after your own child, which is not how you want to feel when you're about to come home after a 10 week stay on the NICU. So it's much more about what support is out there. What can we do to help parents while they're on the unit so that when they come home, they can feel more confident. So that's been a really completely coproduced booklet. Similarly to that there's another project I've been involved in, that's been completely parent-led to develop some aids to use on the neonatal unit. Again, all about empowering parents and helping them ask medical staff the questions they want to ask and feeling more involved with their baby. And that's been completely parent-led, the ideas came from parents based on focus groups, and interviews. The design of the aids was all driven by parents. And it's come through a few different iterations now. And each time it's gone back to parents to get their input before we fed it back into the unit. So what you end up with is a product developed by parents, for parents who really get it and get what that experience is like. And I think the parent advisory groups are just invaluable. And I know there's some brilliant ones across the country, because it means parents have been given a voice and an opportunity to get things out there on the unit like that. 

Gill Phillips  51:28
That's such good examples, Rachel, it makes me feel quite proud in a way in terms of some of the earlier work we did with Nobody's Patient and how some of these things are leading in the same direction. So Leigh Kendall, who was one of our MatExp leaders, a mum, who sadly her son Hugo died, having spent time in a neonatal unit, the same stories we're talking about. Medically, things were very, very good, but in terms of the things that can be learned from experience, and Leigh got involved in helping the hospital rewrite letters to parents, because she was aware of how that communication again, and how things were, how she felt receiving a letter and how much better it could be to rewrite things using better wording and so on. It's wonderful to see really wonderful to see these parent-led examples coming through and people listening now. So I think you've really set the way for further podcasts. I think the parent passport lends itself very well as a kind of segway to transitional care. And we've got some wonderful people who might be prepared to come along and talk to us about that. Nikki and Katie, just dropping a hint. What do you think? 

Nadia Leake  52:39
I'm sure they would.

 Rachel Collum  52:41
I think that would be brill! 

Gill Phillips  52:42
That'd be brilliant wouldn't it. Okay, well, let's see where this can lead. And thank you so much, Nadia, and Rachel for so generously and courageously sharing just a small part of your stories with us. But with that aim of helping other people and getting family integrated care properly integrated into everything that happens.

 Nadia Leake  53:02
Thank you. Thanks for having me. 

Rachel Collum  53:04
Yeah, thank you. We could talk about this for hours. So yeah.

 Gill Phillips  53:09
Thank you.

 Gill Phillips  53:10
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.

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.