Episode 160 ICP & Me

Trigger warning this episode contains discussion of baby loss.

What if you found yourself entangled in a challenging and rare pregnancy condition, not once but twice, with a heartbreaking ending? Unravel the personal narrative of Jenny Chambers, the founder and CEO of ICP Support, as she shares her painful journey through Intra-Hepatic Cholestasis of Pregnancy (ICP). From the agony of stillbirth, the challenges of conceiving again, to her unwavering commitment in raising awareness about this complex condition, Jenny's story shines a light on the importance of support, understanding, and research for families affected by ICP.

We shift gears to shed light on the essential role of diagnosis and medical support, examining a mother's devastating account of losing two babies during pregnancy due to undiagnosed ICP. The narrative underscores the significance of self-advocacy during pregnancy and the critical need for increased awareness about potential complications. We then traverse the intricate journey of ICP research, treatment, and community support, bringing in insights from leading researchers and consultants who are pushing the boundaries in ICP treatment. We engage in a thought-provoking discussion on the impact of ICP on women's lives and the critical need for empathy and understanding from the medical community and society.

In the final part of our episode, Jenny reflects on her tireless work in raising awareness about ICP, her experiences within the NHS, and her instrumental role in connecting women with research teams. This conversation unveils advances in ICP research, the uses and limitations of sodium oxycholic acid, and the potential of new medication under trial.
Want to know more?
https://www.icpsupport.org/index.html#gsc.tab=0
Please contribute if you can to help this amazing charity keep going by  donating to their end of year fund raiser.
https://bit.ly/FundingTheFutureICPSupport2023


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Thank you all for listening, My name is Florence Wilcock I am an NHS doctor working as an obstetrician, specialising in the care of both mother and baby during pregnancy and birth. If you have enjoyed my podcast please do continue to subscribe, rate, review and recommend my podcast on your podcast provider.
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Its easy to explore my back catalogue of episodes here https://padlet.com/WhoseShoes/TheObsPod I have a wide range of topics that may help you make decisions for yourself and your baby during pregnancy as well as some more reflective episodes on life as a doctor.
If you want to get in touch to suggest topics, I love to hear your thoughts and ideas. You can find out more about me on Twitter @FWmaternity & @TheObsPod as well as Instagram @TheObsPod and e...

Transcript

Speaker 1: 0:00

Hello, my name is Florence. Welcome to the ObsPod. I'm an NHS obstetrician hoping to share some thoughts and experiences about my working life. Perhaps you enjoy Call the Midwife. Maybe birth fascinates you, or you're simply curious about what exactly an obstetrician is. You might be pregnant and preparing for birth. Perhaps you work in maternity and want to know what makes your obstetric colleagues tick, or you want some fresh ideas and inspiration. Whichever of these is the case and, for that matter, anyone else that's interested, the ObsPod is for you. Episode 160 ICP and me. Today I am extremely excited to welcome to the ObsPod Jenny Chambers, founder and chief executive of ICP support, which stands for Intra-Hepatic Colostasis of Pregnancy. And yeah, I'm just beyond excited, I have to say, because, although I've done an episode on obstetric colostasis or ICP, I really admire all the work you've done with your incredible charity, and when you messaged me and said any chance I could come and talk, I was just, of course, yes immediately. So thank you very much for coming, thank you.

Speaker 2: 1:38

Florence, thank you so much and thank you for all your support over the past years. I know you recommend us as a charity and that just that's just so fantastic. That's really one of my aims that when health professionals think ICP or OC, they think ICP support. Yes, we cannot, cannot replace health professionals. Of course we can't. We're not health professionals but we have the lived experience of the condition and of course we work in research into the condition. So we kind of hope that what we're adding to is an additional support for all clinicians outside the clinical care space where they know that people affected by the condition are going to get sensible, research-based information about it.

Speaker 1: 2:31

Yeah, and that's so valuable, particularly at the moment when everybody kind of does Dr Google. It's yes to have that trusted place. So I was thinking it would be nice, if you're okay, to tell people a little bit about yourself and maybe the beginning of your journey into this. And why did you found ICP support? And I know it's very personal, so you know, share as little or as much as you feel able.

Speaker 2: 3:02

Of course, I actually had to give a talk similar to my around my personal experience a few weeks ago in Australia and I was invited over there to speak and I was very excited because it was the first time I've ever got to be invited abroad to speak and I had no idea how long the journey to Australia. So that was a bit of a shock and took the stardust out of my eye somewhat. Yeah, it was. It was interesting to go back to that personal experience because it's not something that I talk about a lot these days and, interestingly, I've just gone through an anniversary. It's the. It was the anniversary of our very first daughter, victoria, who was stillborn at 36 plus five days and it came absolutely out of the blue an incredible, devastating shock and we left the hospital without her and without a reason for her stillbirth and we were told that she was just one of those things and we were told to go away and think about another baby and get on with life. And I have to be honest and say I found it really hard to get on with life.

Speaker 2: 4:23

I was a building society manager at the time and I was hoping to sort of work my way through the ranks. And this was in the mid 80s, when it was still and still is to a certain extent today difficult for women to break through that glass ceiling really. And so I was hoping to do that. But her death just absolutely knocked me for six and suddenly the world didn't mean what it meant anymore. The work didn't mean what it meant anymore. I just didn't know where I was and I actually left that job a because I couldn't focus on it and give it a hundred percent, and I'm very much a person that if I take something on you've got to give all of you, and I didn't feel it was right to keep the job, knowing I couldn't give all of me. And also I guess, if I'm honest, that the reaction of the building society at a higher level surprised me a little bit. At a regional level, I'd had fantastic support from my manager, but I had a higher level. I didn't get that support. And when I asked for an exit interview and had one, the CEO actually shared with me his wife didn't think that women should go back to work after having babies.

Speaker 2: 5:45

Can you imagine was like hearing that, yes, after suffering such a devastating loss, and then finding out that actually you were in a building society that wasn't really behind women and I kind of thought you know what, I'm not gonna stay with you, I'm gonna go elsewhere or look elsewhere. I hasten to say that that building society has been merged now so it doesn't. Just in case anyone's out there wondering yeah, so I had this time to myself and I had this time to grieve and we started to try for another family. And that was another big shock, because that took a year for me to conceive. I conceived very quickly with Victoria, but it just wasn't gonna happen the second time round and that brought its own pressures of desperately trying to conceive not just on me but on my then husband as well, especially when you ring him up at work and say it says I'm ovulating now. But we did eventually conceive and very sadly miscarried that pregnancy at about 11 weeks.

Speaker 2: 7:01

It was actually what they call blighted over my don't know this turn these days, florence yeah, probably not as much but well it was what they called so that the cells hadn't developed and I guess that kind of helped me cope a little bit. But I had to wait for miscarriage, then ended up with a DNC and then thought, okay, this isn't gonna happen, I'm gonna have to look for another job and career. And I'm sure you've heard so many people come and to you and tell you there's a few weeks later, about a month or so later, I suddenly realized I was pregnant again and that pregnancy did last and it did continue. And what I noticed around 28 weeks was I got back the same itching that I'd experienced with Victoria. Now, with Victoria it had sort of started at about 29, 30 weeks and it was whilst we were away in France, and I genuinely thought it was prickly heat, because I used to suffer from prickly heat as a little girl when my dad, when we lived in Malta, because my dad was in the army, and so I'd mentioned it to the GP at the time and the GP had said, oh no, no, no, itching is normal in pregnancy, nothing to worry about. So I thought, well, I better mention it again to the GP. So I did and again was told nothing to worry about, and then at 30 weeks, I slipped in a shop and broke my kneecap. I had to have it pinned and put in plaster and we just couldn't cope at home. I had a bit of a circulation problem with the leg, which meant standing up was hard, and so in the end the hospital that I was under at the time said look, this is Darth, come on in, we'll look after you. You're not high risk, but come on in, we'll look after you, which they did. And I told them about the itching and they said oh yeah, we can see from the notes from your other hospital. You did this before and it is normal, nothing to worry about, but we'll do some blood tests and this will tell us if there's a problem. And they came back and they said the blood tests were normal and I just accepted that didn't occur to ask what these blood tests were. I had no medical knowledge at all back then and at 38 weeks they induced me and my eldest son, alex, was born safely and I thought all my Christmases had come at once. It was just an amazing feeling.

Speaker 2: 9:43

What came after that was also the realisation that he wasn't going to replace Victoria, and I think I'd naively thought that his arrival would make up for everything and of course it helped. But I suddenly realised and it felt very selfish that I wanted both of them. I still wanted her and I realised that was going to be something for me to have to get used to, to have to come to terms with in some way. But life did get good and I'm still not working and looking after Alex, and we decided to try for a final baby and that took about six or seven months and again pregnancy, just like the other two. The itching came back about 26 weeks, this time 27 weeks, and I mentioned it to the hospital and they said no, it's fine, you've had this before. It's absolutely fine, jenny, it's nothing to worry about.

Speaker 2: 10:51

But by this time I was friends with some of my anti-native class, maintained friendship, and they had husbands who were GPs. So they asked their husbands and they said, no, no, we think as far as we know, itching is fine in pregnancy, nothing to worry about, the hospital's right. But none of my friends who were pregnant had ever itched like me. I just wasn't finding anyone who was scratching themselves raw at night like I was. For me it did start on the hands and the feet and then it became more generalized and it would just keep me awake at night. It would really click in. I'd notice it odd periods during the day, but at night around about six o'clock it would start with a vengeance and just wouldn't go away until about five or six in the morning. So I was becoming more and more tired, more and more anxious and I can see I was becoming depressed as well because I was having a toddler to look after as well as cope with itching.

Speaker 2: 12:02

And I repeatedly asked at the hospital and with my community midwife, why can't I have this baby early, why can't I have this baby at 38 weeks, like I had Alex? And I kept being told there's no reason to Jenny, there's nothing wrong with you. I even had one of the midwives at the hospital say to me look, I know, I know you've got special care and attention last time, jenny, but you don't need it in this pregnancy. You're absolutely normal, like you're like any other pregnant woman. And I kept saying how can I be like any other pregnant woman when I've had a stillbirth? That isn't making sense to me, especially when you can't give me a reason for that stillbirth. But, florence, I was like trying to turn back the time. Yeah, I knew I couldn't do it and I couldn't get people to listen. It's nuts, isn't it?

Speaker 1: 12:59

Yeah, and.

Speaker 2: 13:00

I tried. I tried so hard, but I had nothing to back me up other than this gut feeling that this ish wasn't normal. Eventually, they said I could be induced. At 39 weeks and a couple of days before I was due to go in and be induced, I went to the community midwife who was going to do just a routine check.

Speaker 2: 13:24

Now she knew that I had still remained anxious. She knew that I was still worried it could happen again. So she always tended to spend a bit longer listening into the fetal heart using her sonic aid, the sort of that portable and vice that you listen in to baby's heart beats with. And I can remember that appointment. It was in the afternoon, the heartbeat was there, loud and clear and strong, and it wasn't mine, it was the baby's, and she was happy and I felt reassured that it was there. A couple of hours later I went in to labor.

Speaker 2: 14:02

We got to the hospital around seven o'clock in the evening and the midwife listened in with the pinout, that handheld device that they sometimes used to listen into the heart beat with, and she recorded a fetal heart. And then we talked about pain relief and they did a vaginal examination which only revealed I was one centimeter, which, to be honest with you, florence, I was gutted with. I was at all this pain, regular contractions, one centimeter. So they talked about pain relief and I was going straight for the epigerual yeah arguments, straight for the epi. I was a real epigerual fan, had it with Alex and I said to them every year on the way oh Jen, how about look, how about we run your bath? We're going to do in the water because that can help pain and we can get some pethidine, but you're doing so well, why don't we think about that? And I kind of went, yeah, right, then, whatever, yeah, just get the. Okay, get it going.

Speaker 2: 15:08

And in the midst of all this they got. Well, I started to run the bath. They were getting this going and they said, right, so what we'll do now you've had these before. I had a quick, longer trace of the baby's heart on the CTG machine cardiac toker craft machine. Yeah, that's fine. I was an expert on CTGs because I'd had them all the time with Alex in hospital. So they got it set up, put the pads on and there was nothing. I could hear, just silence. And I knew just devastating.

Speaker 2: 15:50

I knew it had all gone wrong again, sorry. And I remember saying to my husband, richard, you better come and hold my hand because it happened all over again. And his face and he was saying no. And the mid twice ago, no, jenny, jenny, just just bear with us, bear with us. But I knew Florence, I knew. And they brought in a scan machine and they did a scan and said, yeah, jenny, I'm so very sorry your baby has died. And genuinely, florence, I didn't know how I was going to get through the next few hours. I just didn't know how I was going to get through another birth Holding my baby wasn't going to get to take home. I just couldn't see how I would go. But those midwives were amazing, absolutely amazing. One of them, barbara, shared some information with me about her own history and I thought right, okay, barbara, you're still here practicing, despite what I know you've gone through. So I'm going to hang in there and, with her help and with the midwives, it really was not long after all of that that I actually gave birth to Olivia, my heaviest at seven pound, for my grumpiest looking baby and my baby who had the biggest feet so far, enormous feet. And again, we left that hospital being told that they had no idea what had gone wrong. But they recommended.

Speaker 2: 17:46

I came back and saw a different consultant. I knew of this consultant. She had been doing war drums when I was in with Alex, so I knew who she was. I'd asked the midwives Because she was quite stern. Her name was Judith Weaver and she was stern. But they loved her and all the midwives opted for her. And the irony was that at the beginning of the pregnancy I'd asked my GP, could I see her? Because that actually never seen my consultant during the pregnancy. And the GP said oh, no, no, no, they don't, they don't like you swapping, they don't like you doing things. Again, it's this etiquette. And going back, yeah, yeah, 1991, it was in place at the time. You couldn't. You couldn't sort of asked to see another consultant and I was only asking because I saw that she did regular war drums.

Speaker 1: 18:46

Yeah, you might actually meet her.

Speaker 2: 18:50

Yes, but he said I didn't fight it, one of my biggest regrets. But anyway, six weeks later went to see her and she looked at my notes and first question she asked, which I thought was a bit of an obvious question, but she said what? How can I help you? What do you need to know from me today? Well, I'm sure you think he was a bit obvious, but there we go. I'll give you the benefit of, because I was feeling a bit angry, to be honest, by then, florence, I was not surprised. Yeah, I wasn't in the most receptive of moves, but she, she was really calm and I said Well, I want you know, do you have any idea, when my babies died? And she said, yes, and I know exactly why your babies died.

Speaker 2: 19:42

Do you remember you itched. I can't forget that itching. And you were told it was normal, weren't you? Yes, she said, well, it's not normal for all women. For a lot of women in pregnancy, yes, it is, women do itch, but for some women it's the only sign of a condition, a liver condition called obstetric colon stasis. And I said, okay, and she said Do you remember you had some blood tests?

Speaker 2: 20:12

I said, yes, they were all normal. She said, no, they weren't normal. They were what we call liver function tests and at the moment it's the only way we know how to diagnose the condition and all of yours were abnormal. You had two in this pregnancy, you had several in your other pregnancy and we can even see one from your other hospital from your first pregnancy, and every single one is abnormal. And we know that you have raised levels of a liver enzyme which tells us that your liver was inflamed at the time. But they also help to diagnose the condition at the moment. And she said and I think I should just give you all the bad news at once Do you remember you asked for 38 week birth. I can see in your notes you repeatedly asked. I have to tell you that the only way we know to manage this condition is to induce babies early and no later than 38 weeks.

Speaker 1: 21:28

It's crushing.

Speaker 2: 21:30

Yeah. And it was interesting the emotions at that time, because for one split second I had that feeling of yes, I was right, I was right, yes. And then the absolute realisation that being right had come with a massive price yeah, massive and she was just amazing. She was amazing and she said I don't know how you feel about having another baby. And I was saying, well, we both decided we want to. We both said at the time Olivia was born, we'd never do it again. But within hours we were saying we wanted to and she said if you do decide for another baby, I would be very happy to look after you. And I'd also like to introduce you to a liver specialist called Elwin Elias. He's from the Queen Elizabeth Hospital in Birmingham and he also has an interest in this condition, like me. And that's how it all started.

Speaker 2: 22:33

Wow, I was looked after by Judith and Elwin in a subsequent pregnancy and by then I knew I wanted to do something. I felt I had a responsibility to do something with this knowledge, because it was really becoming apparent that very few people knew about this condition. My friends whose husbands were GPs they were. They were devastated. They had no idea that this condition existed. They never had anything in their training and, you know, it became. It became apparent talking to other women that they'd never heard of this condition and that they were being told that itching was normal. So I felt very much a responsibility to do something about this. I just, yes, I had an answer, yes, we were going to have another baby, hopefully, and yes, I was being well looked after. But I couldn't walk away, I couldn't leave it and not try and get the word out there. And I asked Elwin and Judith would they help support me, do this by being the expert opinion behind me, by my medical evidence, if you like, for getting awareness out there. And so I started to raise awareness in the old fashioned way, because there was no Snapchat, zoom, tiktok threads, twitter no, no, no, no, no. Xface, but there was nothing like that. Had to do it the old way of phoning up magazines and newspapers and telling them my story and say would you please do an article on this so that we can raise the profile and hopefully reach more people who might be affected.

Speaker 2: 24:17

And that started to go well and I eventually set up a support line, a separate telephone line in the house so that people could phone me and I was sending out, to start with, a couple of papers from other parts of the world because there was nothing in the UK out. But I also persuaded Judith and Elwin to set up an informal research group and I was kind of like the late representative and then and we all worked together and then that eventually lead led to the publication of a review from Nick Rain Fening and Mark Kilby, called at Stetric Colostasis, and Cambridge University Press gave me permission to send it out to everybody who contacted me, rather than have to pay a fee for copyright, which can exist sometimes in research papers. Yes, so I would send that one out. And then we finally got an instance, judith and Elwin, we've got an incidence for the condition in the UK which still stands for the moment. Around 5500 women a year will get it. That's 0.7%, and more recently we now know that that percentage almost doubles for women of British South Asian women, and we also now know because of research that's more likely connected to a different genetic change or variant that they may hold.

Speaker 2: 25:44

So this research started and I started to become more and more fascinated by this condition. I also took part in research, so I donated loads of blood, loads of urine. I donated my placenta and I tried a couple of meds for Elwin and Judith. The first one didn't work very well and had some rubbish side effects, cause a lot of abdominal pain, so I thought I was going into labor, which you can imagine was a bit scary. But then we settled on a med which is still used at the moment, called a sodium oxycholic acid. So I was one of the first to try that for them, and that was really my first introduction into taking part in research and beginning to understand that if we were going to get this condition noticed by other health professionals, it needed the research to back in.

Speaker 1: 26:44

I think so in preparation for today. That's such an amazing story. But I was looking at your timeline on your charity website as well and I was thinking, in some ways your timeline sort of matches my career, because I was starting out in OMG in the early 90s, and it made me remember. Oh yeah, there was this weird time where you could only get bile acids done by sending them to Birmingham and it would take a week to 10 days to get an answer. And then we went to this thing where you could do it twice a week, on a Monday and a Thursday, and then now we can do it whenever I want.

Speaker 1: 27:29

And I think I hadn't really appreciated till I looked at that and I looked at my kind of experience of ICP and realized, oh my God, everything I've learned and done over the years actually comes back to the work you've pioneered.

Speaker 1: 27:48

So I think it's incredible what you've achieved in terms of any obstetrician or midwife certainly in the UK would know what is ICP and what are the tests we need to do and there are risks. And then we went through knowing that and thinking, oh my God, we have to induce everybody, yep, yep. And now you've refined it further. So we're like these women now don't need to worry because their bile acids are lower and we can actually focus on the women that need it. So it's been an amazing journey over the last 30 years that you've kind of taken everybody on and led, and I love the fact that I do a lot of work with women's experience and co-production. And for me, I think one of the reasons I really wanted you to come on was this idea that to convince people, you needed the research and you needed to work from the very beginning with the researchers. Yes, yes, which is just so fundamentally changed what we're doing.

Speaker 2: 29:01

Yes, yes, oh gosh. Yes, I remember bile acids coming in. Elwin set that up. Elwin and Judith set up bile acid testing and that was phenomenal. And that was quite exciting too, because I then started to learn how research you can get samples, take samples, freeze them and use them years later, because Elwin tested my frozen blood and we discovered Tim's bile acids have been in the hundreds Right and he was induced. He was born just under 35 weeks and although he had to spend some time in the neonatal unit, I look back and think that was absolutely the right thing to do now for him.

Speaker 2: 29:39

And yes, I mean I honestly don't know why I had this gut feeling that it needed the research I just did. I think it was Judith and Elwin who I first met, who they were just such I don't know if this is going to sound odd, but such human people. They weren't these mystical doctors. I come from a family where doctors were sort of God-like. What they said went, and maybe that's why I didn't query a lot of things, I don't know. But Judith and Elwin weren't like that. They talked to me like a colleague. I'm thinking, I want a doctor, I'm working with them, sort of started it all, and then I was just so lucky to meet Catherine Williamson in 1997.

Speaker 2: 30:32

Mark Kilby was doing being asked to do presentations on ICP following the paper that I spoke about, and we went to Queen Charlotte's and Chelsea Hospital in the old Goldhawk Road and that was in the late 90s and Mark had said to me Jenny, I know you've done your personal talk for Elwin before, would you do it for me? And what I'd really like to do is if you could set the scene with your talk and then I'll go on and do the clinical bit, the science. Yeah, because we were still in an era where there was a lot of skepticism. I even had a few doctors phone me up on the support line and read me the right act about. What did I think I was doing? Who did I think I was? I was nobody I knew nothing.

Speaker 2: 31:21

I wasn't a doctor. This condition was rubbish, rubbish. I was frightening women and about a condition that couldn't possibly cause stillbirth. Not a lot of doctors, I have to say, god smack. I know, I know, I know. But there were enough to make me think what am I doing? What do I know? Who the hell do I think I am? But I had Judith and Elwin there going. No, keep going, I'm not going to keep going.

Speaker 2: 31:49

This is the one thing you're going to find out about research, and not everyone will always agree with one another. Jenny, it's not black and white. We can do the research and we'll believe it, but not everybody else will, and it's right to critique research. So I hung in there, so I did this talk for Mark and afterwards the organizer said oh, we have somebody who'd like to meet you. She's called Catherine Williamson and she's a doctor at Queen Charlotte, st Chelsea Hospital and she has a special interest in this condition. And that meeting transformed everything. It just transformed everything. Elwin and Judith were amazing, but they had other things they were interested in. I think they did what they did because of the research, but also to support me. They were just amazing. But Judith had a special interest more in diabetes and Elwin in the liver in pregnancy per se, not just ICP. But I met Kath and she shared with me that she was going to spend the next several years of her career dedicated to this condition. I went OK, you're my kind of woman.

Speaker 2: 33:07

I want to try and work with you if you'll have me, and we got on really well. And what we were able to do in those early days well, in the late 90s through to the early 2000s was that if people phoned me on the support line, I would answer the questions as best I could send all their papers out to them, but I would also tell them about the research that was taking place, and particularly Kath's research, and say, if you're interested and you give me permission, I can send your name and contact details to Kath, who will then get in touch with you and tell you about what she's trying to do and what we were trying to do. What she was trying to do then was just to better understand the condition, Just to start to look at the nuts and bolts of it, to look at the genetics, because we knew that it was found in families. And that's when I was introduced to Dr Peter Dixon, who was working with Kath and who is the genetics genius for ICP, and then I was able to sort of say what they were doing. She would contact them and then recruit them to the research and that's how it started and it was so successful that I think we got to about 2005. And Kath said this is no good. We are doing so many referrals for you. You're so passionate about the condition. I'd really like to find a way for you to work with us officially.

Speaker 2: 34:35

And it had just so happened that I'd done my phlebotomy training at my local hospital. I'd done my phlebotomy training because a friend of mine who was a nurse said she saw this advert and she said Jen, you want to get your foot in the door in the NHS, don't you? Yeah, Because you believe that getting inside has been an institution in my health. Yeah, Well, here's a job I think I've been doing, here's a job I think you can do. And she said it's a phlebotomist. And I went awar, what's that? And she said oh, you take blood. I said wait, can I take blood? I'm only just used to having my own blood taken.

Speaker 2: 35:13

I can't do that. Yes, you can, don't be a wimp, get in there. So I went and had this interview. The interview? I'm not sure if I should say this. Oh, I'm going to say it anyway. I haven't named the hospital and it is back in the 90s. The interview was. You chatted to them and by then I'd gone back and done my human biology GCSE A Star, may I add. Congratulations, thank you very much. And the chap interviewing me talked about that and said OK, so what we're going to do now is you're going to watch me take some blood samples over the next hour and if you don't faint, you've got past the first bit of the test. Honest, I'm not joking. Right, I thought.

Speaker 2: 35:57

OK, I can do this, so we did that, and then there was a break and he said so the next part of the test is you're going to take a blood sample. Oh yeah.

Speaker 1: 36:10

See one, do one, teach one.

Speaker 2: 36:13

He said if you can't take the blood sample, you don't get the job.

Speaker 1: 36:19

Oh, what pressure.

Speaker 2: 36:22

So he was brilliant. He waited for a nice fat juicy vein. Luckily, the person did what often people do, is they look the other way. My hand had been shaking so much and it was in the old days Neel and syringe, which actually is easier, I think, in some ways, than the vacutain. Anyway, I did it. I did it, off we go. And he said yeah, okay, you've got the job. When do you want to start? That was it. I was in on the wards taking blood. It was scary. It's not like that. I hasten to add that to anyone listening to this now. It's honestly not like that these days.

Speaker 1: 37:10

They have whole simulating plastic arms. Yeah, plastic arms.

Speaker 2: 37:17

So that's so. I was doing some part-time work and I think that was really good for me after having Tim just sort of get out. I'd been in this bubble, hadn't I, of ICP and stillbirth and trying to get a live baby and I think it was really good to go and get this part-time job where I could get back into the real world. But it was with the ulterior motive of trying to get into the NHS and I was working on the wards and then I went out into the community and it was just a fabulous experience but also taught me so much about, you know, listening to patients. We didn't have a lot of time, but it's amazing what patients would tell us, chat to us, especially if they were in hospital for a long time. They saw you as a familiar face and they'd chat to. So I had this skill and so CAH was able to use this skill and get a job for me at Imperial College London as a research phlebotomist, and that's how I started One week, 2005. And 18 years later, I'm still going.

Speaker 2: 38:26

Pete taught me all the skills I needed for lab work, so I was taught how to spin blood, how to extract the buff what they call the Buffy Coat which has the DNA, the genetic material in it, and store it and freeze it, cut up for centres, aliquot urine, and I loved it. I kind of was sort of thinking to myself, ooh, I'm a real scientist now. Well, of course I wasn't at all, but that's not the point. I felt special doing all this work. I just really loved it.

Speaker 2: 39:00

And again, both CAH and Pete were scientists and clinicians that just spoke to me like a colleague. It was lovely and I learned so much alongside CAH. She never thought I was daft, she never blittled me like I'd had with some doctors in the past. She patiently explained when I started to write articles. She was really great with her feedback, always the positive first, followed by how I could improve. And I just learned so much. And the more I learned, the more I wanted to learn and the more I keep wanting to learn now, even at the age of 65, as far as I'm concerned, I'm going to keep going in research.

Speaker 1: 39:51

It's an incredible story. It really is your story. I think I'm sure you won't remember, but I think our paths crossed at one point because I had a patient when I was quite a new consultant who got obstetric anesthetics very early, very early in pregnancy and I was tearing my hair out, literally thinking what am I going to do for this poor woman Because she the itching was so bad she was using a hairbrush. It was horrific and she was second trimester and I'd never, ever seen ICP in the second trimester. And I reached out to Kathy Nelson-Pearsie who gave me Kathy Williamson's name and your name, and then you jointly helped me give this woman some treatment and I definitely remember blood samples and placentas and things. Yes, yes.

Speaker 1: 40:56

And she came back for another baby and we were like, right, we know it's going to happen, and we know it's going to happen really early, let's start stuff. And she got it at something like 12 weeks and to this day she's the worst case I've ever had. And after she had that second baby she said to me both babies were born early. And after that she said to me love you, florence, but I'm never going to see you again because I'm not doing this again. Yeah, and I kind of think, if that's one story for one obstetrician in one hospital and then you multiply that by everything you've achieved, that's just mind blowing. And then, alongside that, your excitement and interest and enthusiasm that's still there to find the next thing. Like you know, it's a dioxyconic acid and then it's actually so. It's actually useless, so or not useful for most women. Or you know, it's evolving so much through the work that you, you collectively, have done.

Speaker 2: 42:11

Yeah, thank you. Yes, I remember her and I actually met her. I think it was a waterloo station.

Speaker 1: 42:20

Yeah, I was going to say I think it was waterloo station.

Speaker 2: 42:24

And just added to her, bought a coffee and, yes, it was horrendous because the research now was showing that this typically ICP is third trimester, typically itch on hands and feet. But then we were seeing, hang on, this condition does things that are very atypical, like we're getting women getting it at seven weeks, getting women who aren't even itching on the hands and feet, they're itching on the arms and the legs and we were starting to realize this was a much, much, much more complex condition than I think. Well, certainly, I first realized I suspected Kath always knew that it was a complex condition. But, yes, I remember supporting her and it's interesting what you say about a sodium oxycholic acid, because you're right, when we did pitches, the trial, it kind of looked like it was saying that the results did sort of imply that it was a bit of a useless med to take. But this is where Kath is so fantastic, because Kath knew that it wasn't quite like that for us and the things that a lot of people don't realize about the the are. So trial, is that there? I think it's. I can't get this. I might get this wrong. So, kath, if you're listening to this, please forgive me, but I think it was something like 70% of the women who were randomized in placebo did not have severe disease. They did not have, certainly didn't have bile acids in the hundreds, and one of the difficulties with that study, quite naturally, was we couldn't recruit the women with really severe disease, because they wanted the the earth so, because it had been used for years and years and years and and so they wanted that. They didn't want to get a placebo, a dummy drug. So that was one of the things that kind of went against it. But there was no arguing that it didn't do quite what we'd hoped for with bile acids and there was certainly no arguing that it didn't reduce the itch overall as much as we had hoped it would. Nonetheless, we knew from having seen women in clinics for years that for some women it is a miracle drug when it comes to the itch and that some women were responding with their bile acids improving. And so what Kath did was to get the very wonderful and the very brilliant Caroline O Vardia, who's a consultant at St Thomas's, another expert in ICP. She did this meta analysis in 2021. And what she was able to show was pretty much the message came out don't throw a so away just yet, because for women these bile acids are 40 micromoles per liter or more or so can reduce the chances of having mcconium staining, so it's the chances of a spontaneous preterm birth.

Speaker 2: 45:27

It's a hydrophilic med, which means a friendly bile acid. So what it does? It displaces the more toxic bile acids in the bile acid pool and in fact Caroline's work has shown that about 60% of the bile acid pool, when you take it out of the bile, is a so deoxycholic acid. So it's so. Elwin always taught me that it was like a whitewash of the bile acid pool, but the I think the easiest way to understand it is it does make the bile acid pool less toxic. So it does still have a place, but definitely not the med.

Speaker 2: 46:04

I see P and we need a new med and that there are contenders in the background. I can't say very much, but that tenders in the background. That cat will be looking to pilot. There was an initial one that we used in a study called for licks about and it's what they call an, an I bat inhibitor and illy old bile acid transport inhibitor. And really essentially because I'm not scientists I can't explain it properly, florence, but in basic language it makes the person with ICP pull out their excess by. Along with that comes the increased chance of side effects like diarrhea. So it's got to be used carefully and the dosage has to be worked out. But sadly the drug company behind the trial pulled the plug when we just didn't get enough recruits, and I'm not sure why we didn't get enough recruits. I think some of it is following COVID, being seen to have changed from COVID is my perception is it's been a little harder to do research, particularly involving meds. But I think there is also not enough to support for research in pregnancy. We really need to get behind pregnancy research. So that means trialing meds. We need to think about that.

Speaker 2: 47:26

Everybody of my age remembers the lidomite yeah member, that med given for severe sickness in pregnancy that stopped the sickness sickness but then, to everyone's horror, saw that it was leading to limb malformation and everybody is so aware of that. And I think there is still a place for testing medication in pregnancy. And the bottom line is I trusted Elwin when he said to try a so deoxycholic acid and when I asked him would you give it to your wife, he said yes. And when I asked him how early would you give it Back then he said 12 weeks. I actually wouldn't take any medicine till 16 weeks.

Speaker 2: 48:16

That was my own personal preference, but I realize now how safe it was to get it at 12 weeks and I think it's very behind it and I think we've just got to keep pushing the boundaries and I know it's easy for me to sit here and say it because I'm not going to get pregnant again. It's easy to make these statements when you've been through it and I know what an anxiety provoking time pregnancy can be for some people. But, as I said, I trusted Elwin back then. I trust Kath now and as a charity, we would never get behind the work she does and other researchers. There are other researchers out there doing ICP research Bill Hague in Australia, for example but but I trust Kath and if she introduces a med, I feel confident that med is safe to take. I feel confident, as confident as you can be. You can be.

Speaker 1: 49:20

Yeah, because.

Speaker 2: 49:21

I totally appreciate that when a med hasn't been used in pregnancy, you've got to get the data to prove it safety. I know that I'm not daft, yeah, so I know she would never knowingly introduce a medication that she didn't think was safe, and so I'm hoping that over the next 12 months we'll see something else coming in. It's very exciting and, yeah, yeah, sort of a pilot trial to start with and then, if we get enough data from that pilot trial, do the bigger trial and fully enough. That's how pitches worked. We did the first trial you might remember called pitch. That was back in 2009 or 10, I think something like that and then recruited enough people to that for proof of concept to show that we could get.

Speaker 2: 50:14

Women were prepared to take a dummy drug in pregnancy and then couldn't get the funding Right. They just couldn't get the funding to go straight into the larger trial. So there was a gap of about four years before we got pitches and Lucy Chapel was heading that trial and an amazing another amazing clinician and scientist, and so that wasn't incredibly successful trial recruiting just over 600 women. So I think this new med is going to be a little bit similar, yeah, and I think it's very exciting for women, because the great thing about this medication doesn't start working until it gets into the gut. So the word is systemic, isn't it? It's not systemic, it's not going to go elsewhere and then it starts its job when it's in the gut.

Speaker 2: 51:10

So, really, by definition, a safer med almost also would have been, as far as I can see with my limited scientists background. So, yeah, very exciting. Been used in children with really good results, particularly for the itch, and it just may be that we'll end up with different meds. Maybe one med will treat the itch but not the bile acids, yes, but med for the? Who knows? But I think for me, as long as the research keeps going forwards, that's the most important thing. But you'll know yourself, funding for research at the moment is dire.

Speaker 1: 51:51

Yes.

Speaker 2: 51:52

It's so hard.

Speaker 1: 51:53

Yes, and presumably you have to bid for funding because what you've got within the charity is not enough by any means to do that sort of work?

Speaker 2: 52:04

No, absolutely not. We've been able to fund small pockets of research, but it's Kath who has to shoulder, and Pete that shoulder the responsibility for getting those grant applications in, and I really empathize because, as a charity, we've been churning out grant applications over the past 12 months. I'm really not getting anywhere and it's really difficult at the moment for us as a charity, and it really made me feel so good to hear you say that we're your go-to charity and we are the charity that has the most experience and the science behind the condition, but we're also a charity facing not being around next year.

Speaker 1: 52:54

Oh, oh God, that's devastating it is devastating.

Speaker 2: 53:00

It's particularly devastating because it comes at a time when I will also be leaving the charity next year. Wow, that's a big step. It is a big step, florence. I made this decision, worked with the trustees two or three years ago and we've been working hard ever since. We've been what's called succession planning, getting everything in place for someone to come in. We've utilized everything to build up our core staff. We have a lovely small group of staff very dedicated to carrying on the work, providing information once I'm gone. The trustees are there, they're in place, they've got some new trustees, everything is going forwards for us and we know we're needed because we always regularly evaluate whether we think we're needed as a charity.

Speaker 2: 53:56

The most recent survey highlighted that, unfortunately, there's still a lot of misinformation being given to women about ICP out there in the clinical space. I think, off the top of my head, it was something like 92% of women were given misinformation about the diagnosis and investigations needed for ICP, and that was a bit of a shock to us. Yes, I bet. Yes, there's other areas that the statistics aren't so alarming, but we know we're needed. We know if we go, there is no one that can replace us. There's no specialized charity that can replace us, and so we've been working on an end of year appeal to try and drum some money out. We're in the middle of putting together a big grant application which is looking hopeful but which isn't guaranteed, so we really need financial support to keep going, and at the time I made the decision to go, it was absolutely, for me, the right decision.

Speaker 2: 55:07

I honestly don't feel and this is my personal opinion, it's not a criticism of anyone else who does this, but I'm not sure that founders of charities small charities should stay in place until they pop their clocks. I think it's good to get a fresh perspective, to get new people coming in, apart from Alex Ferguson, who stayed in his post for a long time. Get football managers staying as the football manager for 30 years, would you? I mean, at home? So it is the right time to go, but I had to wait until we got the staff in place who have been taken over the work that I've always done. Yes, and because you're not gonna attract a new CEO, who's gotta come in and be an all singing, all dancing CEO, can you no? So that's what we've been focusing on, and that bit's gone brilliantly.

Speaker 2: 56:02

It's just that the money hasn't come in this year as we hope. So we're going to be having this appeal end of year appeal where we're hoping that anyone over the past 30 years that's been supported by the charity can make a donation to us and we're keeping everything crossed for the application that we're making for more funding and I will go on the 29th of March 2024, but that's just the charity and running it. I will remain as an ambassador for ICP support. I will remain working, being the bridge between the charity and the researchers, which I'm really excited about, which the trustees are very excited about. I'll continue to give my presentations to Student Midwives on ICP, which has gone really successfully this year. So I'll continue all that work and, hopefully, funding willing, I'll be staying at Imperial College working two days a week for them, but I am a bit cream crackered, florence.

Speaker 2: 57:11

Not gonna lie Like a few days to me to be me? Yes, because sometimes there is this. I'm ICP seven days a week. Yes, every day of the year, and I think I want a little bit more time back to explore other things that I can get involved in.

Speaker 1: 57:39

Definitely Having a bit of balance is no bad thing, and then you've got energy to do the bits that absolutely I can see you're so excited about, but you don't have to do absolutely everything for everybody, yeah.

Speaker 2: 57:55

Yeah, running charities these days is such hard work. I really hope we can keep going, because I've written a piece for our appeal page and there is a little bit of me that's thinking, if this charity goes, it's gonna be like another bereavement. Yeah, it's already tricky for me and it's over my baby. Yes, yeah, and it is our charity. It's everybody who supports us. It is a collective charity, but deep in my heart it is still my baby.

Speaker 2: 58:38

Yes, my baby, it's very much so I can see that and so to think that it could go is a bit of a blur, but I'm remaining very positive that that's not going to happen. Yeah, yeah, and that, hooker by Crook, this time next year I'll be having a day off. Yeah, and doing something nice. Yeah, and King, king. Isn't it great that I support this here.

Speaker 1: 59:08

Yeah, yeah. So I think we're kind of coming to the end. So you've mentioned the appeal, the end of year appeal, so we will put a link in the show notes and it'd be fantastic if people can give whatever they're able to give to support you. Thank you, but I usually end with a sort of zesty bit, the bit I want people to remember from the end of the episode. I was thinking maybe in terms of do you have any advice for people who are not in the best position to be a part of the show? Yeah, I think it's a bit of a challenge for women with ICP that you'd like to say this is my key thing, and then sort of similarly for professionals looking after them.

Speaker 2: 1:00:04

Yeah, there's kind of a two-parter to that first question. I think the first thing I would say is trust your gut and stand your ground so that people listen. It's hard, but do that To women with ICP. It's a similar thing, one of the things we do as a charity. We don't advise women what they must do. We give them the information, the research behind what we tell them to take to their health professionals if they're not getting what's perceived to be the best current care for ICP. And so I would say to any woman with ICP take that information along, take someone with you and just sit there until you get someone to listen.

Speaker 2: 1:00:56

I'd also say if you're listening to this in the middle of the night and you're scratching, it will go. I promise the itch will go and it will be so much better once you've had your baby and it will be worth it. But it's hard at the time, but hang in there. And then to clinicians, I think I would just say listen and if you have someone with ICP, think ICP support. We're not aiming to replace you, we're not aiming to replace you. Couldn't possibly do that, not in a million years. You're the health professionals, the doctors and the midwives that we trust look after us during pregnancy. But we can. The charity can just help a little bit. Support what you do outside the clinical care space.

Speaker 1: 1:02:05

I think that's brilliant advice, I think the listening thing I mean that just is comes up again and again and again Listen, listen properly and understand why that woman's telling you what she's telling you.

Speaker 2: 1:02:20

Yeah, it's so important but it's so hard in a busy clinic space. I've been in the day assessment unit at work. I see how frantic it is. I see people suddenly turning up or with appointments that are understaffed. Everybody's overworked in the NHS. We all know this and we want to support you all in the NHS. But if you can find that nanosecond of time just to listen a bit longer, I think that can make a world of difference to the person that you're talking with. I've reared to be heard, as I've been heard by Katherine, by Judith and by Elwyn and others. That makes such a difference. Stacking you cope with what's happening to you. Such a difference, such an important skill, but it's not an easy one.

Speaker 1: 1:03:18

Yeah, Thank you. I think that's a perfect place to leave it. It's been so wonderful to talk to you and thank you so much for sharing such a kind of very personal, very difficult but also very uplifting in places journey. So thank you so much for coming on.

Speaker 2: 1:03:43

Oh, florence, thank you. You know you were one of the first consultants who contacted me to sort of see how I might support your patient. I can't tell you back then the impact that had on me. I was going what?

Speaker 2: 1:04:00

what they want, florence wants me to try and help with her patient. That's just amazing and it really boosted me at the time knowing that another clinician other than Kat and the ones that I knew had that faith, that they felt they could trust me with their patient and you, that it wouldn't be like a loose cannon. So thank you, florence, thank you so much.

Speaker 1: 1:04:30

Oh, my pleasure. You were an amazing help. You know, like I said, I remember it to this day, and it's quite a long time ago. I think the children are probably teenagers now.

Speaker 2: 1:04:39

Yes, they will be, they will be.

Speaker 1: 1:04:41

Fantastic. Thank you very much. I very much hope you found this episode of the OBS pod interesting. If you have, it'd be fantastic If you could subscribe, rate and review, on whatever platform you find, your podcasts, as well as recommending the OBS pod to anyone you think might find it interesting. There's also tons of episodes to explore in my back catalog from clinical topics, my career and journey as an obstetrician and life in the NHS more generally.

Speaker 1: 1:05:19

I'd like to assure women I care for that I take confidentiality very seriously and take great care not to use any patient identifiable information unless I have expressly asked the permission of the person involved on that rare occasion when it's been absolutely necessary.

Speaker 1: 1:05:43

If you found this episode interesting and want to explore the subject a little more deeply, don't forget to take a look at the programme notes, where I've attached some links. If you want to get in touch to suggest topics for future episodes, you can find me at the OBS pod on Twitter and Instagram and you can email me at theobspodcom. Finally, it's very important to me to keep the OBS pod free and accessible to as many people as possible, but it does cost me a very small amount to keep it going and keep it live on the internet. So if you've enjoyed my episodes and, by chance, you do have a tiny bit to spare, you can now contribute to keep the podcast going and keep it free via my link to buy me a coffee. Don't feel under any obligation, but if you'd like to contribute, you now can. Thank you for listening.