34. Rachel Crook - caring for little ones, as a mum and a nurse!

Today we  continue the theme around support for children and families.
My guest is Rachel Crook, who is a mummy to 2 young girls AND a paediatric nurse. I met Rachel when she spoke at a recent Whose Shoes event in the Midlands, focusing on early years’ care. I was thrilled  she agreed to talk to me on the podcast and give us an insight into her ‘both sides of the fence’ experiences.

The combination of having both lived and learnt experience can sometimes be the most powerful of all …

Lemon lightbulbs 🍋💡🍋

• Being a parent, worried about your child(ren) and trying to get answers, is HARD
• It takes a LONG time to diagnose some chronic conditions; a holistic approach is essential
• Patients and family carers do NOT make this stuff up – BELIEVE them!
• Look at the WHOLE child. And then the child within the family, including mental health needs
• We NEED to join the dots. Will the new Integrated Care Boards deliver?
• Appointment delays have a huge effect
• BIG responsibility to get the most out of those brief healthcare appointments
• Loads of impacts when only one parent allowed to attend a healthcare appointment 
• HCPs: how it feels to move to ‘the other side of the fence’
• Why does it feel like a fence, a battleground - let's work together!
• In Whose Shoes, we try to explore solutions that work for both ‘sides’.
• Listen! Never have preconceived ideas about the outcome 
• Reach out! If you don’t know there is a problem, you can’t fix it
• How about recording difficult conversations?
• The last appointment of the day - can be detrimental
• Should parents be allowed to communicate with individual NHS HCPs?
• It is hard for children with food allergies, excluding favourite foods. Dippy eggs!
• Difficult balancing act between playing down concerns for the child, but having an open  conversation with the HCP
• Play therapists enable parents to speak openly and get the most out of consultations
• Find imaginative workarounds to give children with nutritional needs the same educational and social experience as their peers
• School! Give plenty of notice! Parents can’t rustle up a gluten-free, soya free, dairy free gingerbread man at no notice
• Chronic conditions are expensive AND you need to be good at maths and science!
• It helps to know what to expect. How long will it take? What is involved? Preparing a child is so important!
• Involve parents in writing letters - the right info and … language matters!
• Different perspectives: something that is an admin issue to you might be HUGE to me
• Acknowledge parents as experts, and the amount of care they are delivering
• Commissioning systems are affecting the quality of care that can be provided
• Positive changes do not have to be huge. They have to be doable
• There is an amazing global network around kindness!
• Happiness is infectious!
• Self-care and wellness are essential for professionals!
• Work together! Join-the-buzzwords – integration,  what matters to you #WMTY, personalised care and more!
• Let’s help Rachel’s important book get published! 🙏🏼
• Mega collective wisdom in the ‘Wild Card - Whose Shoes’ podcast series! 😀

Links
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Transcript

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SPEAKERS

Gill Phillips, Rachel Crook

Gill Phillips  00:10

My name is Gill Phillips and I'm the creator of Whose Shoes a popular approach to co-production. I was named as an HSJ 100 Wild Card and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of health care, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes wildcard is for you.

Gill Phillips  00:40

There's a bit of a theme going on with the podcast at the moment, and that is around children and families. I have recently spoken to Bob Klaber, a very kind paediatrician, and to Aishah Farooq, a wonderful young ambassador for listening to children and young people. Today's guest is Rachel Crook. I've been very keen to chat to Rachel on the podcast since meeting her at a recent Whose Shoes event that we ran in the Midlands, focusing on early years care. We were looking for someone with a powerful lived experience story to help set the scene at the beginning of the workshop. I was told that Rachel had some insightful experiences caring for her own children, but that she was also a nurse at the hospital. Would this be appropriate? I found this question fascinating, Whose Shoes is all about breaking down barriers and removing labels. You do not have to choose whether you are either a parent or a nurse, you are a human being and can speak as both. And indeed, the combination of having both lived and learned experience can sometimes be the most powerful of all. Rachel's talk was powerful and insightful, spontaneous from the heart, honest and just totally what we needed to hear. So, as I say, I'm delighted to have persuaded Rachel to join me on the podcast today. So welcome to Wild Card Whose Shoes Rachel, can you tell us a little bit more about yourself and what's important to you?

Rachel Crook  02:18

Thank you, Gill. Yeah, the word ‘persuasion’ made me giggle a little bit there because as I have said a few times when we first spoke about it. And again today that I'm not sure that I've got what it takes, really, I'm not sure that other people are going to be interested in hearing my story. But we're here. And we'll see where we go from here.

Gill Phillips  02:37

So I have told you that imposter syndrome is 'de rigueur' for this podcast series. So, you are in the right place.

Rachel Crook  02:45

Definitely some of that certainly today. So yeah, so I'm Rachel, I think, first and foremost, II'm a mum, I'm a mummy to two little girls who are three and five and keep me very busy. And also, I'm a nurse, I'm a paediatric nurse by background, and my job title now is professional lead, which doesn't give everybody an awful lot about what I actually do. But I support lots of community services looking after children and families in our area. So the two things do come together. And actually, both my children have been under at least one and now a second of our own services. So in terms of services that directly support, and my girls are supported by those services, as well, which obviously then makes that relationship kind of … I have two hats for those relationships. And when I call to speak to, to the teams, I will say, you know, it's Rachel, I'm ringing as mum, or Rachel, I'm ringing, you know, as professional today, just so that they know really, and I have discussed the complexities of that. So yeah, a little bit, I guess, about the girls, because that's what's that's what's led us here. Both of them have got some ongoing health needs, mainly gastro involvement, tummy issues, and here's how I say it to most people, and they have some problems with their joints. They have something called hypermobility. So what would have been previously called double jointed syndrome, and so their joints bend the wrong way. So it just gives them a little bit too much flexibility, can cause a little bit of pain, can cause them to be quite tired because they have to work hard to keep those joints in line. And it's caused lots of different problems over the years. So my eldest is five and a half just finishing reception actually. So there's been some question mark over a syndrome called Ehlers Danlos Syndrome for her and then subsequently for her sister. And that syndrome is a connective tissue disorder, which can affect all different systems of the body. So like I say, it's a big question mark. It was diagnosed last June. And then if you will, undiagnosed this year. So when one consultant says yes, it's Ehlers Danlos. One consultant says no, it's not. no they don't think it is

Rachel Crook  03:13

So it's one of those very difficult chronic conditions that can take years and years to be diagnosed. Looking at her symptoms, looking at the whole of her, and reading up on Ehlers Danlos, she certainly does fit some of the criteria and the boxes, but not quite all of them. But like I say to lots of people, it sort of doesn't matter. She doesn't need to be put in a box, she doesn't need a label, it's about managing her, her symptoms. It's about managing how it affects her day to day. And my biggest stumbling block, I guess I've come across as a parent particularly, is somebody looking at my child holistically, you know, looking at the whole of her. As a nurse, that's what I was trying to do. That's, you know, our bread and butter, part and parcel of the whole thing. Don't ever look at one part in isolation, look at the whole child. But unfortunately, my experience of services hasn't been that. My experience of services has been quite specific to that individual need, they haven't considered anything else. Nobody's connecting all the dots. So then you end up under lots of different professionals. At one point, between the two of them, we had six or seven different professionals involved with the girls. So a couple of different consultants, dieticians, podiatry, physio, commuter paediatrics, we've got lots of different people involved, they all seem to be doing different things. Not quite tying it all together. You know, there's a little bit of involvement of teeth with both Sophia potentially, you know, we're not certain but there is a normal element with Ehlers Danlos Syndrome, it appears could be having some impact. But we're not certain a lot of these things, we have to see how she grows a little bit of involvement with hearing, we're not certain she's hearing as well as she could, you know, audiology wait is quite significant. So that's another another service that we're not quite there yet. But we're you know, we're in the, in the waiting for that. So there's all these different people, but nobody seems to bring it all together. I've spoken to the GP a couple of times, and in fact, we saw them yesterday, just to say, you know, these things are ongoing. She tells me multiple times a day that she has a sore tummy. You know, she's five and a half. It's difficult to hear that so often. And I did say I was honest with the GPs, I'm running out of things to tell her we're running out of things to do. The Calpol doesn't help, you know, we, we go for hot water bottles, sometimes she has a rest. It does stop her play and it does stop her doing things. It stops her in her tracks and stops her activities. School have rung a couple of times to say she has been upset today or I pick her up from the gate and they say she's told us a few times today she got sore tummy. know, but we're not getting anywhere. She has been under gastro since she was just over one. So that's nearly four and a half years of gastro involvement. And, you know, we haven't really got anywhere. So, you know, it becomes really quite challenging for me. And I feel as though it doesn't, it's not directly the same as Rachel. I think it's ‘Rachel Rocking Two Stomas’  you've got a few Rachel's haven’tyou 

Rachel Crook  05:27

A lot of Rachels. Yeah,

Rachel Crook  08:00

I think it was Rachel Rocking Two Stomas that talks about not being believed and it's very different to her really because obviously you know she's actually got the stoma and can show people it is that, and people are choosing to potentially not believe her which is just crazy. But I think because the girls present happy, smiling, playing, they go to school they get to nursery, you know, that 30 minutes snapshot of a consultation or possibly a little bit longer if you know if it's a first appointment maybe they don't see the night times when they're distressed and the numbers of times we’re up every single night you know they don't see the times when she wants to play and then curls back up on the sofa because actually her tummy’s hurting too much you know they they don't see that. They see a happy smiley girl she lets them prod her tummy,, she's you know, she's quite amenable, they don't see it, it makes me then become quite paranoid, if that's the right word about people thinking I'm making this up. And I think that's where perhaps my background isn't helpful you know, in terms of knowing of things like you know, fabricated illness, and that's always kind of sat in the back of my mind since having Sofia and this might link with some of your maternity work so since having Sophia who's my eldest, and like I say, she's five and a half she'll be six in October, I have been diagnosed with OCD, obsessive compulsive disorder, which is not what I would have thought it was. You know, I think I perhaps, I just had that generic … people that like everywhere tidy you know, when the cushions in the right direction and the carpet nice and you know, … unbelievable. That's not what my house is like we've,, we've heard and it's not that at all, and a lot of the obsessive thoughts in my head and my concerns. They lead me down some quite dark avenues and actually Given that I've had professionals not really wanting to act, I've had people I've sent videos of them crying at night to that have said, “Oh, you know, it's not that significant” have made me feel like, this is me, this is me, we're not getting anywhere, nobody's diagnosing anything. Nobody seems to be interested, they're gonna think it's, it's all me. And that's quite a lonely place to be, you know, and this is me being obviously completely honest about our experiences here

Gill Phillips  10:28

I really appreciate that, it's a very powerful … that's a family isn't ,it together as real people, not divided into this specialist or that problem within the family

Rachel Crook  10:40

exactly at that dividing of the child. And then now we have the dividing of the family, because only one of us can go to appointments, so only one parent can attend appointments, thanks to COVID. You know, and that obviously started at the beginning of COVID. And lots of hospitals are still ongoing with that it does, it does vary, some are now allowing a second, but for a long time, it was only me, or it was over the phone, and it was only me, you know, and I'll come back, and I'll say things to my partner, and he'll be like, “I can't believe they said that, or, you know, I'm not happy with this. I'm not happy with that.” But he's not able to be there and, and have that conversation as well. And one of the things that I picked up on in Bob Klaber’s episode with yourself. He talked about how the time with professionals is actually quite minimal within a patient's life. Tiny really? Yeah, yeah. And it's tiny. And it was really interesting. I was running actually, when I was listening to that one. And I actually stopped and got my phone out and thought now I need to make a little little note to myself about that. So that I don't forget, because sometimes there's so much powerful inspirational stuff comes out in a podcast that, you know, if I don't write it down my brain’s , like what was it that I wanted to kind of think more about? And I think from a parent perspective, I could almost flip that entirely on its head. So he's right. It's a small portion of that child, which is kind of linking to what I've just said about seeing a happy, healthy girl in those 20 minutes. But actually, you might wait weeks, months, almost a year, you know, for that appointment. So actually, it's massively significant sometimes. And you feel like you've built yourself up and built yourself up and built yourself up, and then you come out of the appointment and think I didn't say this. I didn't say that. Should I have challenged them? Should I have pointed this out? Should I have said this? And then you feel like, You've almost wasted it, like you've wasted all of that time for it. And, you know, certainly like in in COVID, I look back now through some of the letters. And there was such a long time when we weren't seen, you know, I  look particularly at … so my youngest was quite…We had quite a difficult time through COVID. And for a whole year, she wasn't seen. They were all phone appointments. She was dropping weight, because it was her red book I was looking at, with her weights in , and before she had preschool boosters yesterday. So I'm probably .. my eyes open with matchsticks today because they they haven't gone down too well. We've had a bit of an unsettled girl overnight. But yeah, I was looking at that. And I saw the two weights over a year apart, where the second one was less than the first and I thought that was what I was banging on about to anybody that would listen for a whole year. You know, when we didn't get anywhere, it took a really long time. We ended up removing lots of food from her diet under dietician advice. And she is now, you know, she's now got the weight back on. She's right at the bottom of the chart, but that's fine. She's following a line. But it took a lot of fighting. And that also kind of links with I think that might have been the Rachel from the schools. Yeah. The head teacher.. Rachel Tomlinson. Yeah, fantastic. Yes. And I absolutely loved that. And she talked about batting for the child. And that just made me think, well, yeah, why is anybody batting at all? Why is it, why is it sides? And I talked, I think, at the Whose Shoes event about experience on the other side of the fence, you know, and yeah, that was kind of a flippant, just off the cuff comment, but actually, it does feel like two very different sides.

Gill Phillips  14:21

And I've heard that over and over in different settings, you know, the social worker who's suddenly looking after her own mother or this expression, sadly, around, I suppose the words around fights or around being on the other side of the fence and that they do go right the way through Whose Shoes work and why does it need to be like?

Rachel Crook  14:40

that feeling like a battleground, you know, that, that sort of thing. And that's what I've heard, you know, I've worked in the community we have children and adults as well because our service does cover adults, with children, adults with complex needs for 15 years now. And that is the same now as It was then when I first started, that families see it as a battleground. And part of me thinks, what is it that we do that makes it a battleground? How can we come through that? You know, is there a way of changing that so that it isn't seen as a battleground. So you don't feel like you've got to go have a fight. You know, I've gone to appointments, we've printed out NICE guidelines, and all my notes and all sorts of things, because I felt like I need to go prove myself at this appointment. But equally, that professional is in that profession, because they care, because they want to make a difference, because they want to do the best for the child. So I'm not dissing any of the professionals that we have been under, because on a day to day basis, they are doing the best that they can do. But, and I'm not trying to say their best isn't good enough. I guess I don't really know what I'm trying to say. But I think ultimately, there is a better way, as a collective to look after our children and our families that need that support. I do think that there's there's a better way because I did say, when I spoke at the Whose Shoes event, that each individual person has been lovely, has listened. But you know, have they really heard or don't know, one thing that I have found a few times is I feel like they come with a preconceived idea of what's going to come out of the appointment. And I think, you know, they might have read over letters, which is good, good preparation, but then I've felt like then they haven't really listened to me. And my reason why I'm not sure that those letters really are giving us our answer, you know, and why I think the conversation needs to go further.

Gill Phillips  16:39

Because there's so much talk about integrated care,

Rachel Crook  16:43

integrated care boards now Gill, as of the first of July.

Gill Phillips  16:47

Yeah, I'm trying to work out what ICBs, and ICC's are, and then you get into the International Cricket Board. I get confused with acronyms.

Rachel Crook  16:57

There may be some similarities? I don't know.

Gill Phillips  17:01

Well, certainly the batting. So I think what you're saying I'm picking up really on so many different aspects. And I'm just thinking of that, okay, you know, make it simple, that one consultation and you go in, and it's so important, and you've waited so long. And I mean, a year, a year for anybody is an eternity. But for a child, what proportion of their life, their very short young lives is that?. So you go in, but you're not allowed to go with your partner because of COVID. So the responsibility of saying the right things, and then reporting back home fairly, you know, what was said, and then him questioning you to find out a bit more. And so one thing and I mean, this is something that's come up in other areas of my work, is it possible or would it be right to have the opportunity if you wanted to, to have a recording of that consultation? And then it wouldn't be your second hand …It wouldn't be you having to have that responsibility. And sometimes, and especially I think any of us if you hear bad news, you need that second person, perhaps to say, what did you hear? Yeah. You know, we've had some scenarios around someone's given difficult news, bad news. They perhaps don't hear anything after that point.

Rachel Crook  18:24

Absolutely. Yeah.

Gill Phillips  18:26

But to be offered, perhaps a recording so that you could go home and play it with your partner or with your daughter or whoever it might be. You haven't got that sort of pressure really to hang on to every detail, or lose it?

Rachel Crook  18:41

Absolutely. Right, that half hour is critical. Isn't that half now that Bob said was only a tiny part? Yeah. And it is only a tiny part? He's absolutely right. I'm not trying to say that, that he isn't, it's just interesting that you can look at that from a completely different perspective, you know? Yeah. And James often says, that's my partner. That's the, you know, daddy in this. James often says, for that individual on that day for that consultant, or whoever it may be, whatever professional it is. That's one conversation that they're having that day with many, many, many, many people. For that individual, it could be the most significant conversation they have in a long time, you know, and it's whether that is considered or not, I don't know, James talks about that within his own work. He gives each person that he speaks to the time and respect and thought that they require the same for each person, you know, and we are but I have had examples where we've been the last person of the day, they're already running really, really, really late. You know, that really, they're not with you anymore. You know, I have had that mentioned of, “I'm on leave next week”. I've already kind of checked out you know, And that's been said in a in a, you know, ‘professionals having a bit of a joke’ kind of a way. And I'm not saying that's wrong. But as a parent, you might then think, oh, okay, well, actually, we've waited a long time for this appointment, it really matters, it does really matter to me. But yeah, your idea of recording I think, is quite interesting, because I don't mind saying like, I've been open about the OCD diagnosis, which, you know, took me a bit by surprise, I have got upset in appointments, many times because I'm, I've arrived at that point. absolutely exhausted, often, you know, we've had such significant sleep issues, due to reflux and pain, and you know, some of it now being learned behavior, I have no doubt, you know, some of it now will be a behavior thing. But other times, it's a very definite issue of discomfort. So I can arrive at this appointment, absolutely exhausted, absolutely desperate for somebody to give me some sort of answer, that's going to make a difference. And then they might say something that I disagree with, or that I find quite dismissive. Or, you know, they say, well, actually, we've discovered this, we'll do this first, and then we'll come back to that. And I've cried, I've got really quite upset. You know, sometimes my upset has come out of a place of being cross, and it's channeled itself in that way. And then, you know, I'm frustrated with myself for crying because I feel like I've lost my point. But that's the reality. And those times I have been on my own. So it's just been me, and one of the girls, whichever one it may be. And then whatever that professional said, After that point, whether I've heard it, I don't know, whether I've misinterpreted it again, I don't know. I can say things. To James, for example, like we talked about, you know, the girls, obviously, quite a lot, I will say some things to him, and he'll totally misunderstand or misinterpret what I'm saying. Now, that could be me and the doctor, if we were both there, me and James, that's two of us to interpret what is said. So maybe a recording would help with, with those kinds of things, you know, and I think, increasing communication in whatever way you can of that two way street. Because, you know, and again, I feel like I'm picking out all your past guests, but I have listened to all the podcasts,

Gill Phillips  20:24

which is amazing. Thank you.

Rachel Crook  22:15

I have really enjoyed them all. And they all kind of have inspired me in a different way and interested me in a different way. But one person that I've linked with as well, via Twitter is Miles Sibley from the Patient Experience Library. Fantastic. Yeah, you know, and obviously, during the episode with him, you talk about, like, the language we use, you know, it's a PALS complaint, or it's a concern, or, you know, whatever. Whereas, if it's the professional making the point, then it is a report or, you know, it's an incident, that sort of thing. And that really has made me think and I'm trying to bring a lot of this into my own work with the services that I support in terms of how can we hear this patient's voice? Recently, we had a letter that came after an appointment, and it had a fair few inaccuracies in it. And I have to say, I was quite disappointed. It made me quite frustrated. So I rang to try and you know, have a conversation about it, just to have the letter corrected. I mean, at the very basic, it was being sent to the wrong hospital. So it was being sent back to the referring doctor. But this wasn't actually at the right hospital. So you know, I needed to make sure it went back to the correct doctor.

Rachel Crook  23:26

So when rang, but I couldn't, I couldn't be given an email address to communicate with the individual or a phone number to speak to the individual, which I do understand to a point. So they had to put me in a clinic appointment. So I had to then be booked to clinic appointment, which was not that far in advance two or three weeks. And then it was a telephone clinic appointment. They were very apologetic, they've changed the letter, we've subsequently added a new one. But to me, it just feels like there could be a better way. But I do also understand you open up those channels, you know. So if we're looking at from a professional perspective, you open up those communication channels, those professionals get bombarded, you know, and how do we manage that for them when they've got such a busy and active caseload? I don't know what's right. But it just feels like we're not quite there in some ways.

Gill Phillips  24:18

And I guess that's exactly the sort of thing that we try and explore through Whose Shoes that to find something that is realistic and actually works for both sides and to have someone like you, Rachel talking on the podcast, that's why I was so keen. You've got not just theoretically, you know, I wonder what it's like to be on the other side of the fence, but you're realistically aware and involved in both worlds. And it's an incredibly rich perspective. And I hope that your voice goes a long way in terms of helping resolve some of these things and improve them. And then we've gotten them when you were talking earlier and I just got such a kind of rich picture of you at that one half hour appointment. But when you said nothing you mentioned that you know Obviously, if it's an appointment about your little girl, obviously, she's there. And I'm thinking, you've also got the question about what you can say, with a child that's, you know, getting older and getting more aware without worrying them. But you want to take that opportunity to talk to the health care professional about what you're really concerned about. But without worrying, you're a little girl. Is that an issue?

Rachel Crook  25:21

Yeah, it definitely is. It definitely is. And, and this is where I think there is value in the telephone appointments as well. Right? Because actually, you take them along to these appointments, and they weigh and hide them and do those things occasionally do observations before the appointment, which is needed, then they sit eating snacks, coloring in doing whatever, while we chat for however long and then they might feel that tummy, watch them walk, this is dependent on the appointment obviously, if it's something like physio, then it’s hands on right from the beginning, but I mean, like  the dietitian appointments are mostly talking, so we may just do a lot of talking. And as much as they try and include the children in that conversation, then that does become quite tricky. You know, and certainly with the girls having lots taken out of their diet, when we're talking about reintroducing things into diet. So the eldest, Sophia, she's very wise, she's very aware. And she's all hearing when she wants to be, as in, you know,, if she's there and listening, like so we do, potentially have some issue of hearing. But you know, in terms of, if she’s sat right with us, and we're talking, you know, if it becomes something interesting …

Gill Phillips  25:32

Absolutely, as children do yeah

Rachel Crook  26:18

You know, then she then she tunes in, but she is absolutely desperate to be able to eat eggs again, absolutely desperate, she used to love having dippy eggs. Now the eggs were removed out of her diet because we weren't certain that they were agreeing with her. It was felt to be one of the things that was causing her the discomfort, causing the constipation and all the other problems that she was having. But we're going through the process of trying to reintroduce, that's a very slow progress, like you have a little bit of something that's got a little bit of egg baked into it. So it's a very long time before you get to a dippy egg. But she just heard reintroduce egg and wondered why I didn't give her a dippy egg the next morning for breakfast, you know, and it's those things that they hear during those appointments are quite difficult. So I don't know, in some appointments, when I was a student nurse, you might go to some appointments, and they'd be loads people there, and they'd have a play specialist there and they’d play with the children. So you could then have that open conversation. You know, I don't want it to be worrying them. You know, I don't like to put words in their mouth. So I don't sort of ask them. Is it hurting? Is something hurting? You know? Because then they'll just, they'll just be like, Yes, mommy, yes, yes. If that's going to get me something,, you know

Gill Phillips  27:52

Yeah.

Rachel Crook  27:53

So, you know, I try not to put words in their mouths. And I think sometimes if they're listening to a whole consultation, they do pick things up, we perhaps don't intend them to or, you know, like, making an issue out of something. So, you know, Sophia, is of an age now where she's more aware of things, you know, like soiling and we have a bit of a problem with that. But whereas I want to play that down to her and tell her “Don't worry, it's fine. We’re sorting that out, aren’t we?. It's sneaky. It doesn't, you know, you don't know it's happened, it sneaks out, don't you worry about it.”  Whereas to the doctors, I want to say “Everything you've told me to try has made no difference. This is continuing, she is getting older, you know, she's getting more aware”. And I want us to try and know what's going on, you know, and there's been conversations about whether she's got sensation or not got sensation. She's now being referred elsewhere for kind of a second opinion, really, because we've been bouncing around for so long ago and sort of not making any progress. So what they're actually going to look into now, is this something called Hirschsprung's, that is a word that's been bandied around since she was tiny, because she was constipated in the neonatal period. And I don't know whether it's that or not, but there's definitely something odd seems to go on with her bowels. But if it does turn out that she's got Ehlers Danlos, that has massive gastro significance.

Gill Phillips  29:17

So that must be really hard to manage. I mean, you're really trying to say the opposite. Really, you're trying to really reassure the child, but get the health care professional to take it really seriously and work with you.

Rachel Crook  29:29

Yeah, yeah. It's, it is incredibly, incredibly hard. Because, like I said, I don't want her to feel like it's a big deal. I don't want her to be worrying. But then at the same time, you have that little snippet of time to get that professional to, to listen really and to hear that that's a concern I've got and that sort of a flippant comment about she may not have sensation, to me is actually quite a worrying element. You know, is there anything that we can do about that? Is there not you know, and if this is something that's going to happen because of the significant constipation she she has had for sort of all of her life, you know, then that's just something we have to manage. But if there is something that can be done to improve this situation, then I would want to do it, you know, because she is, you know, getting to that age where she is more aware. And, you know, they do move on from listening to me to listening to everybody else, don't they? And all their peers and other people have a voice in the classroom, you know, and, that would be my concern if it becomes a known thing at school, that I would worry about that. So, so yeah, so we just hope that at some point, somebody's listening, and they're gonna look into it for us to find out, you know, is there. Is there something that can be done? Is there not?

Gill Phillips  30:48

And does that bring us to school? We've mentioned Rachel Tomlinson, the fantastic headteacher, batting for the child. And is it good enough for your child, aspects of that as well. How can the school help in this kind of situation? Or how does it work out? And I think you were talking when we were talking before about a special event at school and how you might need a bit more notice for that or planning for that. Tell us about school.

Rachel Crook  31:12

School overall is great, it's great. They're very supportive. They are really good. We've just had her first report, and you know, her attendance is lower than they would have wanted. But I was talking to a teacher yesterday and she said, we have a recognized need. We understand that that's okay. But it is lower than than they would want ideally. But they are the generally great. But there have been occasions when they haven't informed me of things that are happening. There was one day when I got told at 8.40 when I dropped her off, that she required a cake for a teddy bear picnic at 9.30. So the problem with being gluten free, egg free, dairy free, and soya free, is that shop- bought cakes are incredibly hard to find. In fact, if anybody knows of any, please let me know. But having a stock of cakes is really quite a challenge. So on that day, I left school, hotfooted it back home. And yeah, long story short, I had a warm cake that I was delivering to the reception of school by 9.25 with the chocolate icing on the top melting down the sides, but you know she had a cake because it's really important to me that she has what her peers have, you know, it's really important to me, I don't want to say oh, she can have a biscuit instead. Oh, she can just … don't worry about it. She'll be okay. No, no, no, she needs the same. There was another day when it was gingerbread. And I knew they were making gingerbread men that week. Nobody told me which day and I dropped her off on the Monday morning we'd had a hectic weekend, dropped her off the Monday morning said to the TA please tell me you’re not making gingerbread men today. And she was like, Oh, really sorry. It is today. And you know, Gill, I burst into tears. It was one of those days where there was just too much the weekend was hectic, I don't think Bethany had been very well. I think sleep was at a, you know, low ebb. So um, so yeah, I burst into tears. I think I came home, I asked them when they were gonna be making them I came home, I made some gingerbread men. And she had some gingerbread men. Not quite at the same time, a little after in time for the school ones to cool. So when they were decorating them, she could decorate hers. They all decorated the others. So she was involved in making the others that she couldn't eat, but actually got her own to decorate, you know, and that …the TA is absolutely lovely. I love her. She's amazing but she said to me, Oh, it’s fine, she can still be involved in making them. And I wanted to say to her, would you want to make a biscuit you couldn't eat? Would you? Would you really? Do you know what I mean?

Gill Phillips  31:20

And especially age five,

Rachel Crook  33:56

Make it put it together, smell it cooking, but not be able to eat it? Seriously. So thankfully, I was able to her one there by the time anybody else was going to be eating it. And those are the things that mattered to me. But since that day, we now generally have a little stock of little chocolate cupcakes that freeze quite well, that defrost well. We've got some chocolate icing and that's that's, you know, free from all of that, that can just go on the top. So hopefully won't be caught out in that way again, because that was just lucky that day I wasn't rushing back home to start a meeting straightaway because sometimes I am. But yeah, that's the juggle I think between being a working mom being a mom of a child with multiple allergies trying to juggle that and these are like, there are loads of unseen, unspoken elements. We must spend, I would say maybe between 10 and 20 pounds a month on pain relief for our girls. You know, it's a lot of money we go through and I say Calpol, but actually I buy the cheap as chips stuff. But it's still not very cheap. You know, and we go through it, because they are in so much pain, such a lot of the time. I make this sound dreadful. They're really not, you know, they're not sitting in a corner sobbing all the time, but they … it has an impact.

Gill Phillips  35:19

Any pain is miserable isn't it , it doesn't have to be acute.

Rachel Crook  35:23

Yeah. And they need that. And then you've got your, you know, your normal illnesses, and they seem to be particularly good at picking things up, you know. So, so they’v got all your normal illnesses and your temperatures, and Bethany particularly quite likes a temperature above 40. She does like playing that game. Bless her. So, you know, we go through the Calpol, we go through the ibuprofen, and we spend an awful lot of money on it, you know. And then they've got their prescribed medications. And there was a mixup the one time with Bethany’s Gaviscon. Because she did end up with two different types of Gaviscon on her repeats, I’d asked for the sachets, they dispensed the liquid, we ran out of the sachets, so I had to buy them over the counter. That was 12 pounds, you know, and they said, Oh, they're really expensive. Are you sure you want to buy them? Well, she needs them. And the wrong ones come on prescription. So unless you can fix that between now and seven o'clock tomorrow night when she goes to bed, which they couldn't at that point, you know, because it was because it was Friday, I think it was the weekend, you know, and so I had to I had to but no, it was bank holiday. That's what it was. It was it was a bank holiday. So I thought I'd got my request in early enough to beat the bank holiday issue. But unfortunately, the wrong one had been dispensed, you know. And I had to buy it because what we have discovered is the combination of a ppi, which is a you know, one type of anti reflux medication, and the Gaviscon in her milk, even though she's three and a half, and you wouldn't expect it to need it. But the combination of the two is actually managing her reflux better than it's ever been managed. But I wasn't going to let her go without for a couple of days, just because I had to pay 12 pound or 11 pound or whatever it was. You know, one of their medications has to be mixed with 50 mils of water and then you give 7.5 to one of them, 22.5 mils to the other one because Bethany's dose is quite considerable. Nobody gives you syringes to mix this up with. So we buy 30 mil syringes, so we can measure the 15 mils accurately, we can measure what we need to give them accurately, the pharmacy don't dispense things like that, syringes that that you can mix that with, you know, so there's, there's all these hidden costs, you know, we're now under Birmingham Children's Hospital, which is great, you know, we've been having some investigations finally for Bethany, which is, you know, really, really useful to kind of get some answers. But with Birmingham Children's Hospital comes a clean air zone, if you want to drive to the appointment, So yeah, and it's incredibly hard to park there. So your parking could be … so the first appointment, I took her to, the parking I managed to get was four pound 99 an hour. And we paid the eight pound clean air zone. So that was quite an expensive appointment. Yeah, so the eight pound clean air zone. And there was, yeah, that two hours of parking. The second appointment, thankfully I took her on the train, which is 15 pounds, which is about the same price but meant that I didn't have to worry about how many hours we were there, which was a very good job, because there was not enough information shared ahead of the appointment. And although you know, some would say well, you’re a paediatric nurse yourself, why didn't know this, but I didn't know she was going for what they call a Barium Meal. So she was having to drink a certain drink, like a chalky drink. And they were taking x rays of it as it went down into her tummy, into her bowel. Well, that was the idea. She didn't exactly play ball. But we got there or there abouts. And unbeknownst to me, they'd be doing these activities till four o'clock in the afternoon. And we arrived at 10. So it was incredibly long day. She had to start the day starved. So they told us obviously of having to be starved but nobody told me the X rays could go on that long. You know, and I don't know whether they always do that. I did say do you always do this, or is it because you're worried about something? Oh, no, this is quite regular. We do it, you know. So it made me think that little snippet of information, just one line in a letter and they'll have a generic Barium Meal letter, I'm sure. One line that said these X rays could be ongoing into the afternoon. Because if I had gone in the car for that appointment thinking she drinks the drink, they do the X rays as it goes down. We'll be there for an hour or maybe two, I’d have been paying an absolute fortune to stay till that point, or making the decision because they asked me what are your parking arrangements? Are you able to stay in Birmingham for another two hours for us to do another x ray at like quarter to four, four o'clock? And I said it's fine. We've come on the train. But if I knew that information ahead of time, that would have been really useful. And to me, it's quite, quite simple and straightforward, you know that it's a line to put in a letter, but that obviously isn't considered also, you know the line in the letter that says your child will be expected to drink this drink lying down with an X ray machine over the top of them because she did not like that at all. And I hadn't prepped her in that way. I've told you, you'll have to drink special drink and they take some pictures. I didn't realize they’d expect her to drink it lying down with the X ray machine over the top of her. They had to do the later X ray standing up because she absolutely lost  it. Bethany likes to know what's going on. She gets quite upset when things aren't as she thinks they're going to be. And if she doesn't want to do something, she will not do it. And especially when you're talking getting her to drink something, they have ultimate control of that, don't they? You know? It was down her, it was down me, it was over the nursery Teddy that they'd given us to take with us, as a bit of n incentive. But in the end, I had a little like, lightbulb moment, I had a lightbulb moment and she's got a very close little friend, who is a little friend of one of my very, very close friends. So I rang my friend, I was like, can we just do a video call? Please, please, please? Could she talk to Lottie because I've just said to her, will you do this for Lottie? Why don’t you show Lottie your special drink you've got to drink.

Gill Phillips  41:20

Oh, wow, that's clever,

Rachel Crook  41:22

Before they do their their pictures. And unfortunately, the video call wouldn't work. But just talking to Lottie was enough. There wasn't enough signal in the hospital to do a video call. But just talking to her was enough. And hearing her voice and me saying maybe we could go see her later. This was when I wasn't aware the X ray was gonna go on till four. You know, and then she did drink it. So one three year old to another, she drank it for her. Not for me,

Gill Phillips  41:47

I can totally believe that. Not for you. But yeah.

Rachel Crook  41:50

Not for me, the doctor, the nurse, anybody else. A promise of a treat. A promise of anything. I would have done anything to get her to drink it. And no, not for me. But for a fellow three year old. She did it for her. So yeah,

Gill Phillips  42:03

That's amazing. Yeah. And there's just so much learning here isn't the? As you know, a lot of my work is around like little things, simple things, you know. To say we haven't got the money or we've got staffing pressures and so on. Obviously, those are massive problems and true of so many situations. But I think this comes down to expectations, doesn’t it?

Rachel Crook  42:22

Absolutely.

Gill Phillips  42:23

That letter being clear setting out…. We did some work with Kingston hospital around admin, which was really, really interesting. And I can remember a kind of similar but totally different context scenario about a guy who was told, I think at the reception desk, just checking that he hadn't had anything to eat or drink or whatever. And I don't know whether it probably was in the instruction letter. But something like that you need to spell out: “we will not be able to do the test. And you will not be able to have your … I think it was…

Rachel Crook  42:56

It might be fasting bloods. Something like that …

Gill Phillips  43:02

The net result was, he was self employed. And it meant that he couldn't have his pre arranged operation. And he'd cleared two weeks in his diary. And it was seen as an administrative mistake or complication or whatever it was, rather than actually, this is screwing your whole business. And if that had been communicated better, or you'd known the significance, then that wouldn't have happened. Or a cancellation or you know, these kind of things. That juxtaposition between, for one side of the fence, it's an administrative change. And for the other side, it's all those, you know, where you parked your car, or how long you are going to be there for. And it's huge. Yes. And I mean, something I'm proud of is we've got … so a shoutout really to, Leigh Kendall who worked with us on the Nobody’s Patient project. And one of our case studies from that was re-writing a letter to bereaved parents, as sadly, Leigh was, who lost her baby Hugo and helped us considerably with the Nobody’s Patient project, to be more empathetic. And to get the, you know, the patients or the people who've had that experience to actually be involved in writing those letters. What is it you need to know, and the actual information but also the tone and the, you know, the simplicity of the language or, whatever to just make it so that it's not two sides of the fence.

Rachel Crook  44:29

And language just makes such a such a massive difference, doesn’t it? The words we use, and it can sit with somebody forever, you know, and it is so important. One of the things that I'm getting a little bit more involved with over the last few months is is the palliative care arena, if you will. And we're developing in our area, sort of a system wide children's palliative care pathway. And I've been involved in that work and one of the consultants that's involved is doing some research around how palliative care impacts on families, the level of care that we're delivering within family homes, the level of care parents are delivering within family homes. And acknowledging parents as experts has been talked about for a very long time. But I think acknowledging the levels of care that they're actually delivering, there hasn't been research, particularly around that in the way that this consultant is looking to do it. Following an education conference I went to last week, it's really sparked my interest in research, actually, and then the impact of that on our clinical roles and how we can change what we do to better ourselves on the back of the research. So yeah, it's an email I've sent only this morning actually to say to I'm reallyr interested in being involved in this research, my links within our community, children's nursinge services, and our complex care team, you know, we know firsthand the sort of intensive care that is being delivered in these families, homes, by families, by support workers, by nurses. And actually, that recognition of it and the research around it will be extremely valuable. And I'm really, really interested to be involved in that. So that's something that sort of, I'm getting more and more involved in that  side of things at the moment.

Gill Phillips  46:23

And they couldn't hear from better people than yourself. Interestingly, actually, I've got something that started on Twitter, I think, yesterday or the day before, and they were talking about language. So coming back to that, and involving the BBC. There's something next week. So Sally, one of the Darzi fellows that I've worked with in the past said basically Gill at Whose Shoes is your person. And I've sent them a shedload of different suggestions of people as to who they might talk to, depending on obviously, what kind of slant they want to take. But you'd be amazing with that as well, Rachel and when so many people have got so much first hand experience of language that makes you feel not listened to. You've come up with such great examples, sadly, of your experience of perhaps not being believed or because of your own OCD and so on. Having an extra kind of layer of worry and yeah, let's believe people Yeah, I think that came up actually in Yvonne, Newbold’s podcast. Or, Janina Vigars, I think it might have been your parents basically saying, we wouldn't be making up a narrative like this,

Rachel Crook  47:29

Why would you?

Gill Phillips  47:30

We want to be telling you, our children are wonderful. And, you know, everything's happy and healthy., so just believe …

Rachel Crook  47:38

Trying to juggle work around various appointments in various differen parts of the Midlands, you know, I certainly wouldn't be doing that by choice. And I wouldn't be buying all the ‘free from’ food by choice, I can tell you for free. You know, it's it's a real challenge. And I think, considering the child within that context of the family as well, because, you know, I don't know how many of the professionals involved with the girls actually are aware of my difficulties. And some might say that's not relevant, but actually, in a way I think it is, because it sometimes makes me more apprehensive about what I share with them and how I share it. And I don't want to make too big a deal out of this. I don't want to be seen to be asking for investigations, I do think it's a useful way of looking at things, the child within the family and not just, you know, because like I've said they're not, sometimes they're just looking at a part of the child, they're not even looking at a whole child. So then, you know, it's important to look at the child within the context of the whole family. But yet, I appreciate like I've said earlier, we're struggling enough to get people to look at a child holistically. So to push them to look at the holistic child within, you know, a family context, as well is maybe a step too far. But it's so important. And actually, it was a health visitor that I would say supported me in getting some help. She pointed me in that direction and gave me a phone number to ring. But nobody ever rang to follow that appointment up. Nobody ever rang to make sure I was okay. It was a formal check or something. When I got upset, and we talked through a lot of things, she told me it's a self referral service. Here's the number, go ring, go refer. I'm really concerned, I think you need to be be speaking to somebody but the health visiting service never followed that up, which is just an example of the way that services have changed. I'm not saying that what they've done is wrong or working outside of, you know what they're commissioned to do, they will have done exactly what they were commissioned to do. And that's the difficulty. The commissioning of services is so, so strict and has become stripped down in so many different areas. And that, in turn, is affecting the quality of the care that we're able to give I think, you know, and again And it links with things like looking at KPIs, key performance indicators, outcome measures, you know, I really am interested in looking at relational outcome measures, certainly with one of our teams, where we talk about outcome measures being a little bit more difficult to actually achieve as much as they're not my favourite thing to talk about. Unfortunately, it's a bit of a necessary evil in some ways, because we do need to be able to sort of demonstrate a worth if you will demonstrate, you know, positive impact. But if we can do that in more of a relational sort of a way, that I think that will be really, really interesting. And one thing this is going to pop sound very sound a little bit crazy.

Gill Phillips  50:44

I love Crazy things. Yeah, go for it.

Rachel Crook  50:47

I think if James could hear me from the other room. I think he'd kick me out. But um, you know, I've listened to a couple of presentations, at conferences, from people from the Art of Brilliance. Now, I don't know if you've heard of, I think it's Andy Cope, the original, the Art of being Brilliant. And what Andy did was he did his PhD in happiness. And, you know, so they present, and we had one last week at this conference. And Andy presented at something just before Sophia was born, so we're talking about six years ago now. And it's kind of sat with me and I've listened to some of his podcasts. I've got a couple of his books, you know, but he did a whole PhD around happiness. Maybe, maybe I could do a whole PhD around kindness, you know? Because if one can be done around happiness, because kindness is massive, you know, it links with obviously, that thing that Bob was talking about. I've always been a massive fan of Yvonne Newbold for years and years and years I've been a massive fan of Yvonne,

Gill Phillips  51:46

Yvonne is the kindest person you can meet, isn't she?

Rachel Crook  51:49

She really is. And I've often used her YouTube videos, as training materials, when I've done study days, you know, and she talks about finding people that are swimming against the tide, which makes me incredibly sad that we're looking for people that are swimming against the tide. You know, she talks so much about kindness, as does Bob, and I think, kindness to each other kindness to ourselves, kindness to professionals, kindness to families, kindness to children, you know, there's, it's massive, it's absolutely massive. And like I say, I have a feeling, I can hear that James is in the room next door at the moment. And if he could hear me suggesting that I might do a PhD, he would actually kick me out, because I wrote a dissertation when Sophia was tiny, and she only slept for 45 minutes at a time because her allergies hadn't been recognized at that point. And she was a very unsettled, baby. And I wrote a dissertation for my masters at that point. So yeah, it was quite challenging. So if I told him I was going to do PhD, at the moment, before, we've got Bethany sorted, and she's still struggling a lot at night, I don't think that conversation would end well. But you know, it's something to consider, isn't it? Something for the future?

Gill Phillips  52:55

Yeah, you don't have to do it now. But if and when you do want to do that, Nicki Machlin, who's one of the people that we've met through Bob Klaber’s, fantastic, monthly kindness sessions, is doing a PhD on kindness in New Zealand,

Rachel Crook  53:10

Is she?!

Gill Phillips  53:11

She’s very much part of that network. So perhaps a smaller immediate ambition would be …

Rachel Crook  53:16

To link with her

Gill Phillips  53:17

Come along to Bob’s sessions,, and link with Nicki?. And see where it goes,

Rachel Crook  53:23

It was funny, I was listening to Bob's episode the other day, and it was talking about the Thursday meeting that they have. And I could, I could try and get involved in that. And then I realized this Thursday, as in last night, because we're recording this on a Friday was meet the new teacher at school. So, you know, there seems to be always something at school at the moment. But yes, I will certainly bear that in mind and see if I can make some kind of connection with her. Because I think it's, I think it's massive, and we talk about change, and we talk about making positive improvements. I think people always think they've got to be something massive, you know, and actually, I don't think they do, I think they've got to be doable, you know, and actually to be doable, the smaller the better in some ways, but it can have a real ripple effect. And that's something that was being talked about on on an Art of Brilliance podcast, I was listening to the other day. And he was saying, you know, if you start your day happy, then those that are like in your immediate vicinity. So like, say you come to breakfast, and you are happy, you know, I've decided today, I’m gonna be in a great mood, then those that you live with, are already 16% happier. Because you've started today happy, it's infectious, isn't it? And then the people that they meet along their way at school or college, work, whatever, they are, then 10% happier because the person that you made happy, is happier. And it goes on and I might have got those percentages wrong. But you know, that ripple effect is quite. It's quite considerable, isn't it? And that's something that I want to think bout, I'm looking at organizing a conference, I've got your name on my list Gill. So I would like to talk to you about whether you could come along.

Rachel Crook  54:38

And I'm meant to be saying no to things. But that's already probably an immediate Yes.

Rachel Crook  55:12

Well, I was going to invite Yvonne as well. So you know, you could,…

Gill Phillips  55:16

And she'll be the same

Rachel Crook  55:17

Yep, you could chat to Yvonne. But well, I have invited Yvonne. I'm just waiting on the response, because I know she's really busy. So yeah, I'm looking at organising a conference, I've contacted Bob actually,, and I knew that, I just want to get this message out within our trust. So this is me talking as a professional. As professionals, we're not very good at looking after ourselves, we are really, really good looking after other people, we're not very good at looking after ourselves. And I want people to focus on that a little more. And to really think about that, and things like conferences, things like continuing professional development and study days. And all of those are so so so vital. But with how busy services are, people feel guilty, they feel they shouldn't be taking the time, they shouldn't be going and doing this or doing that. So I'm really, really trying to push that at the moment. And I thought, if I can pull a conference together, that has got some real inspirational people that can help me to push some of these messages of, we need to look after you because it brings it back to the flight kind of analogy, if you got to put your own oxygen mask on first, you know, and if I can do that, then maybe we can spread some of that if I can get my message to a few more teams of, you know, you have to look after yourself, develop yourself, look after yourself , make sure you are taking the time out, because by doing all of those things, you will be a better nurse, you will be the best version of yourself. And then that opens up all of those doors and also opens up the conversation of I could make some tiny little changes that might impact on the service. You know, we don't need to write a big paper about it. We don't need to develop something massive, and you know, and have it on some kind of national stage, we could do something really simple. I walk into the office with a smile, and say good morning and be happy. And ask somebody, are you okay? You know, you don't look yourself, show that kindness to each other by showing it to yourself first. Actually, we can make a massive, massive difference. So I just hope that I can try and get that message across. And I think by inviting all the right people to a conference, I'm hopeful that I can try and do that. And with my links with the RCN, because I am an RCN learning rep,, I'm hopeful that we can kind of bring them in as well, maybe to maybe with some money to help with some of the funding along with some CPD money perhaps. So that's my, that's a little dream, I've got, that I've got your name next to, Gill

Gill Phillips  57:55

So that's brilliant. And Rachel, I promise you, you will do,  because I can see you smiling here now, I can see your passion to make these things happen. I can see how all of these things are, whether you like it or not almost linking up for you in your life and your family and your professional work. I'm just so delighted that we've had this conversation, because I've had lots of lemon light bulbs. And I'm thinking back to for example, you could take the obvious message, say with schools, you know, give parents more notice. And I see my children and their friends you know, moaning about, we didn't get any notice for x y z. And I'm immediately back there. As myself as a parent of three children, it was fancy dress, that always did me, I wasn't good. But you know, if you add in those layers of actually, this really matters because you can't just whip up any cake, grab one off the shelf, you know, it matters for your child and to include them fully. And I think the other thing … now see how this sounds to you, my challenge for the Integrated care schemes. It goes back really to the roots of Whose Shoes where I heard people talking about personalisation as if we all knew what it was. And it was easy, and we just needed to do it. And I saw tensions between …  Okay, fantastic for people to have choice. But how does that work in a risk averse society and that's really like the roots of Whose Shoes to try and look at things from different perspectives. So my challenge, our challenge for the integrated care system is to put these buzzwords together. So what matters to you, personalized care for a child but the child has got not just one need that you can kind of like fix but multiple needs, but actually their one child, and that whole kind of holistic thing. And they're a member of the family and that the family are real people who've got jobs and perhaps got, you know, one or two health concerns of their own and they need to function as a family unit and to have a consultation whereby…  and letters and so on whereby those kinds of things are just taken into account. And it works for people.

Rachel Crook  1:00:06

Yeah, absolutely. And it's, it's a challenge as well,

Gill Phillips  1:00:10

it is a challenge. And it's real. But I think there's so many people out there genuinely wanting those things to happen. But they might be focusing on one bit, and then there’s silo thinking, and it's hard to get people to think outside their own worlds, isn't it and just join things up a bit more.

Rachel Crook  1:00:29

Sometimes it's just talking to the right person. So you know, this issue with the letter for the barium meal, you know, it's been going through my head should In…. What if I contact the secretary for the gastro consultant? Would she be the right person? Or what if I contacted PALS, but then I don't want them to see it as a complaint. But then PALS might be able to get her message to the right person, you know, I'm just thinking, those are the things that kind of go through my head. And then unfortunately, sometimes things like that go through my head, and then they never get done, because I'm so busy. And how many of the parents think, Oh, that would have been really useful in that letter. But they just don't have the opportunity, the time or the, you know, they don't know where to go with that. So the message never gets fed back. So then, if you don't know there's a problem, you can't fix it, can you , so the hospital may never have been told, and we can only do what we can do with the information that we have. If they're not given it, they can't, they can't fix it.

Gill Phillips  1:01:21

So it's picking up these small things that aren't as big as a complaint, should never need to be a complaint is just : hear me, that was my experience, and it might help prevent it happening to somebody else?

Rachel Crook  1:01:33

Yeah, absolutely. It's that two way communication again, isn't it? It's a big word. It comes up a lot. But it makes a huge difference.

Gill Phillips  1:01:42

It does. It really does. Yeah.

Rachel Crook  1:01:46

So Gill,  there was one other thing that I wanted to that I wanted to mention was that actually …

Gill Phillips  1:01:52

Go for it! 

Rachel Crook  1:01:54

You can laugh at this one as well probably

Rachel Crook  1:01:56

I like laughing.

Rachel Crook  1:01:57

I'm actually writing a book, which is a book of our, I don't know whether it's  a memoir, or you know, a bit of a reflection, but it's kind of a book of our journey and our experiences. And I've called it many things. It has lots of titles at the moment. And I don't know if it will ever come to fruition. But for me, it's almost almost a bit of therapy, really, in terms of documenting some of the girls’ journey, my feelings, how it's gone trying to make some of it a bit light hearted. So yeah, it's, I enjoy doing it. And some of it is often written in snippets on my phone. So perhaps, when I've been dealing with, you know, Bethany being unsettled, and we're finally got her to sleep on the recliner, which is quite possibly the best money I've ever spent in my life and the recliner, to keep us a little bit, a little bit of sanity. And I've perhaps written a bit as a note on my phone. And then I've emailed it to myself, and it's gone into the book, there was another bit that was written, lying on a hospital bed, staring at the ceiling, when we were admitted. And we were waiting on a results on her platelets after some dodgy bruising and me knowing a little bit too much about being placed on an oncology ward, you know, and so it was kind of the what was going through my mind at that moment that's then, you know, going into this book, so I guess this is a bit shameless, really,

Gill Phillips  1:03:19

Go for it. Yeah, I'll be reading it.

Rachel Crook  1:03:21

Just if there's anybody out there that has any links to like, you know, who I could possibly talk to about it as it possibly hopefully does develop, like, say, at the moment is kind of like therapy for me, and it almost helps me to wind down to, to kind of get things off my chest. The Good, the Bad, you know, sort of, it's funny. I just wonder if you've got any contacts out there that might listen to this that might say, oh, you know, you want to talk to this person, you want to send a bit of it to that person to get their opinions on it, then that would be great. Thank you very much.

Gill Phillips  1:03:55

Let's make that a challenge as well, who can help Rachel publish what I'm sure being will be an extraordinarily insightful and entertaining book. And it is funny, I mean immediately and I'm actually sitting in my little study and on that top shelf up there I've got the ‘life in the slow lane’ book that I started when my children were young, and never got published, but I didn't have the advantage of like flicking bits… forwarding  bits to, myself from my phoney and all the modern … I had to actually sit and write it and you know, hadn't got the staying power. So good luck!

Rachel Crook  1:04:28

It is one of those where I've got it, you know, it's on the OneDrive thing. I don't really understand the technolog , James does the technology, but it means that I can look at it on my phone or on the tablet or you know on the laptop so if I've got a few minutes I might … or something just brings to mind I'll just throw out a sentence or a paragraph or even just a title, make sure you put this in you know, sort of thing.

Gill Phillips  1:04:49

So that immediacy …

Rachel Crook  1:04:50

so yeah, I don't I don't know if it'll ever come together. I don't know if it'll ever come together. But you know, it's something that that I fancy doing to maybe help other families. You know, one of the titles it's hard it's been A journey to a diagnosis, you know what it may be that that's what it is, it may be a journey to a diagnosis, it may not be, there may never be a diagnosis, the latest thing that's been thrown around is something called functional abdominal pain. And that actually, it's just one of those things. It just happens. There's no treatment. And she did say it can be debilitating. But you know, there's nothing we can necessarily do. So it may not be a diagnosis in the end, but it's there. And like I say, it's very easy for me if nothing else.

Gill Phillips  1:05:26

And it's a journey and other parents go on journeys. And  I think, you know, that's something that we're getting a lot better at, whether it's through blogs, or whether it's through podcasts, and other people actually sharing their stories, and you don't know who you reached. So good luck with that.

Rachel Crook  1:05:43

Thanks.

Gill Phillips  1:05:44

Well, thank you so much, Rachel. I think I'm just delighted we’ve had this conversation. It's been a very free flowing in all directions. And I think there's some absolute gems within it and definitely adding some very new material to the podcast series. So huge thanks. And I'm glad I persuaded you.

Rachel Crook  1:06:01

Thanks very much Gill. It's been brill.

Gill Phillips  1:06:04

I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favorite 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.