Episode 169 Hyperemesis

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Florence Wilcock (00:00):
Hello, my name's Florence.
Welcome to the OBSpod.
I'm an NHS obstetrician hopingto share some thoughts and
experiences about my workinglife.
Perhaps you enjoy Call theMidwife.
Maybe birth fascinates you, oryou're simply curious about what
exactly an obstetrician is.
You might be pregnant andpreparing for birth.

(00:22):
Perhaps you work in maternityand want to know what makes your
obstetric colleagues tick, oryou want some fresh ideas and
inspiration.
Whichever of these is the caseand, for that matter, anyone
else that's interested, the OBSpod is for you.
Episode 169 hyperemesis.

(00:57):
So today I've got threefantastic guests on the podcast.
So I've got professor katherinenelson piercey and Dr Melanie
Nanner, who have joined mebefore, to talk about obstetric
medicine and maternal medicinenetworks, and in addition we
have Professor CatherineWilliamson, who is also doing a

(01:22):
lot of work in maternal medicinenetworks, and all three of them
are joining us today to talkabout hyperemesis, in particular
, the new nausea and vomiting inpregnancy and hyperemesis
gravidarum.
Green top guideline from theRCOG, which has been written

(01:43):
collaboratively by these threewonderful people, and also a bit
about the implementation ofthat advice and guidance and
also what the future holds,because there's lots of exciting
developments going on in thisarea.
So thank you very much forgiving up your time to join us
today.
I wanted to start a little bitbecause last time we talked a

(02:09):
bit about hyperemesis briefly wetouched on it and, melanie, you
were telling me a bit aboutsome of the work you had done in
what women's experiences wereof nausea and vomiting and
hyperemesis in pregnancy andsome of the quite frankly
horrific stories that you'd kindof unearthed.

(02:32):
So can you tell us a bit aboutthe problem and the sort of
prevalence and how it'saffecting women?

Dr Melanie Nana (02:40):
Thank you, florence.
So, as all of the listeners onthis podcast will know, nausea
and vomiting of pregnancy iscommon it affects around 80% of
patients who are pregnant buthyperemesis gravidarum is less
common.
It affects 2% to 3% of thepregnant population, and it's
essentially a severe form ofnausea and vomiting of pregnancy
.
There was a new definition in2021, which described the

(03:04):
disease as nausea and vomiting,one of which must be severe,
which has started before 16weeks of pregnancy, and it needs
to be severe enough to affectthe patient's daily life or
their ability to eat and drinknormally.
So this form of the diseasewomen can vomit 10, 20 or more

(03:25):
times per day, and typically thesymptoms will stop by sort of
the second trimester, but one infive women who have hyperemesis
gravidarum will vomitthroughout their entire
pregnancy.
So, um a few years ago, weundertook a study of patients in
the uk and we asked them togive a description of their
experience of suffering withhyperemesis gravidarum, and we

(03:46):
were quite struck that just over5,000 women across the UK
replied to this survey, whichasked them questions about how
often did you vomit, had youvomited in previous pregnancy,
had you had any hospitaladmissions, were you able to
access care and I think the keyfindings from the study were
that 5% of the women who repliedhad terminated a wanted

(04:08):
pregnancy because the symptomsof nausea and vomiting were so
severe that they felt this wastheir only option, and 6.6%
experienced regular suicidalideation because their symptoms
were so bad.
We looked to try and understanda little bit about why these
women were going and havingthese poor experiences and

(04:34):
adverse outcomes, and some ofthe risk factors we identified
was severe vomiting, so the moresevere the disease was, which
would make sense if they werebed bound, so they weren't able
to go about their day-to-dayactivity, but also if they felt
that the experience of care thatthey had from health
practitioners was poor.
So that sort of summarizes someof that work and I can talk a
little bit more in detail a bitlater, if you like, about some

(04:57):
of the feedback we hadspecifically about those
outcomes from the women yeah, Ithink those stats are really
striking and I think for me thistopic is quite a lot about.

Back to the thing we talked about before
about not listening to women ornot believing women.
So I've certainly seen womencome and people not really take
seriously how bad their vomitingis or it's just a bit of
vomiting.
And I do recognize what you'resaying about access to care and

(05:37):
we've we've even had women saywell, I'm only going to get
pregnant if I know I can accesscare, pregnant if I now can
access care.
But for 5% of women toterminate a really wanted
pregnancy, that's a reallyshocking statistic, isn't it?

Yeah, Cathy.

Professor Cathy Nelson-Pie (05:54):
Well , I was just going to add that I
think the reason for this, thislack of validation that women
get, is historical and the factthat a little bit of nausea is
viewed as a good thing inpregnancy, and so traditionally,
women have just been sort ofpatted on the head and told to
get on with it, it will pass,this is normal, don't make such

(06:18):
a fuss.
And I think it's difficult forthe lay public and women
themselves and their families tounderstand that in hyperemesis
the extreme form this is notnormal, and when they are told
this is normal, it will getbetter.
Women don't feel validated,they feel dismissed, and it's

(06:41):
those sorts of attitudes thatMelanie and Cath highlighted in
that study.
That feeling dismissed, feelingnot listened to, not having
their symptoms validated,contributes to their perception
of poor care, and so, ashealthcare professionals, we
need to, first and foremost,understand that what women

(07:01):
require is true empathy, whichmeans validating the severity of
their symptoms and how it'smaking them feel.

Professor Cath Williamson (07:08):
I think something else that
healthcare professionals don'talways realise is it is not just
the vomiting that is so awfulfor women, but the nausea, which
can be so debilitating and canresult in people being
effectively bed bound and not togo about activities of daily
living, which can also mean notbeing able to go about
activities of daily living,which can also mean not being
able to go to work, potentiallynot being able to pay their rent

(07:29):
, not being able to look afterother children.
So the effect on people's livesare so great in some cases and
I think there isn't anappreciation of this massive
impact the condition could have.

Yeah, when I was looking at the guidance I
don't know, maybe I'm a bitignorant because I'm obstetric
so I don't do gynae so I don'tnecessarily see people that
early in pregnancy but the ideaof the scoring system to kind of
monitor the severity andtherefore be able to monitor the

(08:04):
benefit or whether treatment isefficacious, that was kind of
new to me yeah, I, I think thethe scoring systems that the,
particularly the puke score thatis mentioned in in the
guideline florence this is a wayof objectively tracking women's
symptoms, but but you will havenoticed that there is a huge

(08:24):
subjective element to thescoring.

Professor Cathy Nelson-Pierc (08:27):
So it's a way of saying look, it's
about how the woman is feelingand how her symptoms are making
her feel and whether she's ableto function or not.
That is part of the scoringsystem, not just how many times
she vomits or how many hours shefeels nauseous, for it's the
effect on her life and theeffect on her well-being.
And actually the scoring systemhas, if you like, received some

(08:50):
criticism because people saywell, this is a subjective score
, but that is a way ofvalidating what the effect that
we've just been discussing, theeffect on the woman.
And it's particularly usefulfor in the context of research,
for tracking symptoms, for andand, as you said, florence, for
assessing the response totreatment, because it allows you

(09:12):
to put a numerical number ontothe symptoms, including the
subjective feeling of the womanyeah, and the subjective feeling
is that's the kind of bottomline, really, isn't it?

That sort of brings me on to the ketones
issue.
So I don't know how we ended upin this situation where if you
have ketones, you're dehydratedand if you don't have ketones
you're not.
I don't I don't really knowwhere that came from.
It's almost like a myth.
But I was really glad to seethat, because I've certainly

(09:45):
looked after women that have hadhyperemesis throughout their
entire pregnancy and I've madearrangements to give them not
only antiemetics you know,anti-sickness medication but
also intravenous fluids.
And people have said to me well, why is this woman attending
for fluids?
She hasn't got any ketones, sodo you want to?

Professor Cath Williams (10:11):
explode the ketones business.
Cath, you do that bit.
Yes, I think the importantthing to remember, and all of us
have studied basic biochemistryand physiology when we were
students we produce ketones whenwe're breaking down fat, when
we have insufficient glucose,and pregnant women have a
tendency to produce more ketonesanyway, particularly in the

(10:32):
second half of pregnancy butthey represent starvation.
They are not a marker in anyway of dehydration, and a poor
woman with terrible hyperemesis,who is also very dehydrated,
may have managed to just eat onebiscuit for breakfast, which
could bring her ketones back tonormal, but she could be very,
very sick.
So, as you say, florence, it'sthe wrong marker and I applaud

(10:55):
the guideline for bringing thisout.

Yeah, to me that was a big stride, provided
we can get that through toeveryone you know.
Back to what we're saying aboutimplementation, actually,
because to get into the mindsetof all the midwives and doctors
seeing women that ketones chuckit out the window, or you know,
it's not not to do withdehydration people have to

(11:21):
unlearn something that is deeplyinstilled and I take some
responsibility, florence,because I was an author on the
previous iteration of theguideline.

That and previous review articles
that followed fell into the sametrap.
I mean, often the woman isstarving as well as dehydrated.
So often a woman with severehyperemesis will have lots of
ketones because she's unable toeat.
But it becomes a very importantdifferentiation when it's used

(11:52):
as a marker for whether to admitor whether to discharge, and
not letting women go home untilthey've cleared their ketones.
That's as bad as not spittingher just because she doesn't
have ketones.
Yeah, because you know, ketonesare very, very common actually

(12:12):
in normal pregnancy.
If you test women's urine in amorning antenatal clinic and
they've missed breakfast, theywill have ketoneuria almost
always.
But they have no nausea and novomiting.
They've just missed a meal.

As a small aside, I would encourage
people listening do not ignoreketones in late pregnancy if
somebody is vomiting, becausethat could be a marker of them
being very sick, but it is thewrong marker to use for your
women with hyperemesis in earlypregnancy.

Yes, now that makes complete sense and I've
definitely seen exactly whatCathy, you just described.
Well, her ketones have gonegone now so she can go home.
The other thing that was kindof stuck out to me it's a big
no-no was the the ginger, theginger biscuits and ginger and

(12:57):
the fact that there's noevidence for that whatsoever.
Melanie, you want to saysomething about that?

Yes, I just remember when, at the point that
we were talking about takingthis out of the guideline, and I
looked through all of theliterature and there is a small
amount of evidence that if youhave very, very mild disease
that it may be a bit helpful forsome patients.
But in actual fact, thepatients that had moderate or
severe nausea and vomiting ofpregnancy there was a lovely
survey done of patientsexperience of being offered

(13:26):
ginger and not only did it makethem feel as if they weren't
really being listened to becausewe wouldn't offer, for example,
a ginger biscuit if someone hadanother cause of vomiting for
any other reason but it actuallycontributed towards them having
more reflux.
So not only is it not helpful,it probably is doing some harm
to some patients.
So I absolutely agree weshouldn't be using it at all in

(13:48):
patients that have moderate orsevere disease.

Professor Cathy Nelson-Pier (13:51):
The other thing that sufferers will
say, florence, is that by thetime they present to health care
facilities, be it in primarycare or secondary care, they've
normally read on the Internetthat ginger might work.
If they're at their gp surgeryor they're in the early
pregnancy unit, they don't wantto be told to go and eat a
ginger biscuit, that they theywant antiemetics, um, and you

(14:13):
know that that needs to beremembered as well yeah, they do
also say that it is horrendousto bring up if you're vomiting.

So if these poor women are told to
take ginger and then they'revomiting, it's very unpleasant
right.

So big no-no and possibly makes things even
worse.

Adds insult to injury unanimous no from all of
us that's really helpful thatsort of brings me to.

So I really like appendix 3 because I'm a
very simple person.
I need very basic instructions.
So Appendix 3 seemed to have avery, very clear plan of what
treatment and then escalation interms of what to try if the
first kind of line doesn't workand what next.

(15:06):
And I particularly wanted toask a bit or ondansetron,
because I maybe because I'msecondary care I tend to see the
women that's already tried thefirst line agents and she's
coming to me in antenatal clinic.

(15:26):
Maybe by then she's 12 weeks or16 weeks and it's not gone away
.
Or she's had some admissions tothe early pregnancy unit for
fluids and treatment.
And there's always this issueabout on dancetron whether it's
safe or not in the firsttrimester.
I don't know if you couldexpand a bit on on that

(15:51):
ondansetron is a reallyeffective antiemetic.

The reason it's second line and not
first line is because therehave been some safety signals
published from some papers.
But there have now been threelarge systematic reviews done
and these systematic reviews ofthe literature have variably
shown a very small increase incardiac defects, a very small

(16:16):
increase in oral facial cleftingand no increase in either.
Using the same literature whichalways makes me very interested
, whether you take the sameliterature and you, you dice it
up a different way and you get adifferent conclusion.
But but those are the bigpublished systematic reviews.
When you look at the issue oforal facial clefting, which is
what most people worry about,because there was a ema warning,

(16:40):
which I'll come to in a minutebut but that's, that's the sort
of message that's got down thatfirst trimester exposure to
ondansetron can cause oralfacial clefting, if you believe
the one systematic review thatsuggests that's a risk.
The background risk of cleft lipand cleft palate in women in
pregnancy is 11 per 10,000.

(17:01):
And in this study the risk inwomen taking ondansetron in the
first trimester was 14 per10,000, which gives an
attributable risk of theondansetron of three per 10,000.
Teeny tiny.
So the point being is that, ifthose that one study is true,
the attributable risk ofondansetron is very, very small

(17:25):
and the argument is that nottreating the hyperemesis and
leaving the woman withfirst-line drugs that aren't
working very well, the risk toher fetus from potential
malnutrition and micronutrientdeficiency is arguably greater
than the 4 per 10,000 risk oftaking the ondansetron.

(17:48):
So that's what it's second line, not first line because of the
query.
It's second line use if youneed to, because it's likely to
be safer than not treating.
But if you use ondansetron,which we all believe you should,
then you must co-prescribelaxatives because it nearly
always causes horrendousconstipation.

Right, yes, and the other thing that maybe
I'm a bit dim about was thisissue that actually none of
these, apart from the first linetreatment, nothing else is
actually licensed for use inpregnancy.

Professor Cathy Nelson- (18:27):
Correct .

And maybe I don't think about that because
so many drugs I prescribe areprobably not licensed for use in
pregnancy.
But I know, having been anobstetrician for quite a long
time, what's safe and I know Ican look things up.
But that seemed, if I was awoman, I that might be bothering

(18:50):
me.

Professor Cathy Nelson-Pierc (18:51):
It goes back to the history.
The history relates tothalidomide, and thalidomide was
a drug that was particularlymarketed as an anti-emetic in
the first trimester.
So people subconsciously thinkthat drugs for vomiting in the
first trimester are more likelyto be dangerous, because that's

(19:13):
what thalidomide was.
But actually the first lineantihistamines, particularly
doxilamine and pyridoxine, aresome of the best research drugs.
In pregnancy, over 30 millionwomen have taken doxilamine and
many, many women have takenantihistamines as part of
research studies without anysafety signals whatsoever.

(19:35):
So it's just the sort of legacy, it's the thalidomide legacy,
that leads people to feelanxious about prescribing
antiemetics in the firsttrimester.
But hopefully, as you said,florence, that the Appendix 3,
this stepwise approach will,will help yeah, melanie.

I'm just thinking about what you're
saying about.
You know, we think about thedrugs and the safety and we can
look them up and I think asclinicians or healthcare
professionals we're used toweighing up the the risks and
benefits of the drug and therisks and benefits of untreated
disease.
And I think while we sort ofreally focus on these for
example the EMA warning andthese drugs get a reputation

(20:19):
that we get asked thesequestions over and over again.
I don't think necessarily theunderstanding of the risks of
untreated hyperemesis gravidarumare that well understood and
they're quite significant.
So I think you know, as welearn more about this and more
research is done to talk aboutthe physical complications which
in severe cases, can result invenicose encephalopathy from
thiamine deficiency becausepeople can't eat, women having a

(20:42):
fatal heart rhythm becausetheir potassium is too high or
low.
You know, I think that we needto be kind of educating both
healthcare professionals andpatients about the risks so that
we can let them be involved inmore informed decision making.
So the way that we think aboutthese things I think needs to
have a bit of a change yeah, Ithink you're right.

There definitely needs to be a shift,
and that's a conversation Ioften have in clinic with women.
They're like I'm pregnant, I'mnot taking anything, it's not
safe.
And it's like, well, you're notsafe how you currently are with
whatever it is the, the illnessthat I'm seeing them with.
You know, I guess it perhapswith antibiotics when they've
got a really bad chest infectionor a urine infection and I'm

(21:26):
trying to say you should betaking these because it's bad
for you and bad for your baby,particularly urine infections.
There's a risk of preterm birthas well and they're oh, but
it's taking antibiotics.
That must be bad.

So I think you're right, there needs to be
a shift and I think when youtalk to patients who are
pregnant, rightly or wrongly,they worry about their baby and
the traditional thinking wasthat hyperemesis was protective
because you're vomiting, so thatyou must be having a healthy
pregnancy.
But some of the work that Cathand I are doing focuses on the
long-term child outcomes forthese women and there are very

(22:03):
good data now to suggest that ifa woman who has severe
hyperemesis, their children areat threefold increased risk by
the time they're teenagers ofhaving a form of
neurodevelopmental disorder,whether that's ADHD or autism
spectrum disease.
So again, I think as as we domore work, we'll be able to
clearly delineate the risks ofboth treated and untreated

(22:26):
disease.
That hopefully will help.

I don't have much more to say
except I totally concur witheverything you're both saying,
but thinking about the way wepresent it to women in clinic.
As clinicians, something I'lloften say to women with asthma
who don't want to take theirmedicine is your lungs, are your
baby's lungs.
Having healthy lungs for youand taking the safe medicine
means you can give your baby theoxygen they need.
In the same way, the medicinesthat keep her gut functioning.

(22:51):
Her gut is her baby's gut andis the way her baby's gut and
it's the way her baby will getnutrients.
So keeping her gut healthy withmedicines we know are safe will
help her have a healthier baby.
And I think, as you both say,we have to shift the message to
be an easy message that womenunderstand, so they know that
we're all aiming for the bestoutcome for them and their baby,

(23:11):
using the best treatment.

Professor Cathy Nelson-Piercy (23:14):
I just want to come back to the
EMA warning Florence just tomake the point that the MHRA so
the UK authority did not issue asimilar warning.
On the contrary, they have putout a statement with the UK
Territology Information Servicesaying that Ondansetron should
be used if indicated so to thehealthcare practitioners
listening, please don't denywomendansetron should be used if
indicated so.

(23:34):
To the healthcare practitionerslistening, please don't deny
women ondansetron in the firsttrimester if first-line
antihistamines are not working.
It's a very good drug.
Co-prescribe laxatives.
And while we're on the subjectof second-line drugs,
metocopramide is also a gooddrug and also works well and you

(23:54):
can prescribe it for more thanfive days and sometimes you have
to play around a little bit.
Some women will say, well, Ifeel a little bit better on the
antihistamines and if that's thecase, we don't take them away.
We add in a second line drug.
Some women will respond tometoclopramide with an
antihistamine, some womenrespond to ondansetron, some
women need all three andhopefully the.

(24:16):
The new guideline makes itclear that, that you should give
them what they need.
If that's one drug, that's fine.

If that's two, if that's three, if that's four
, you just have to control thesymptoms and that's that's the
important message and that justmade me think about taking these
medications regularly, becausesometimes I have women that I
prescribe stuff and they said,oh yeah, that made me better and

(24:42):
then, because they were better,they then stopped stuff,
whereas I'm suggesting to themmaybe they need to continue,
because it's taking it regularly.
That's potentially having thebenefit.
I don't know if you've got aview about that.

Professor Cathy Nels (24:57):
Absolutely .
I mean, I'm more and moreconvinced that you need to take
whatever it is that's workinguntil such time as the symptoms
would have abatedphysiologically anyway, and in
some women that can be untildelivery.
In most women it abates by 20weeks.
But what women can sometimes dois reduce the frequency as

(25:19):
their symptoms improve.
But you're right, florence, inthose early days women need
regular antiemetics, becauseonce you break the cycle of
therapeutic levels ofantiemetics you then start
vomiting again and then then thedanger is that they vomit up
the antiemetics and then they'rein the early pregnancy unit

(25:40):
again.
So I totally agree with youcounselling and clear
instructions about taking thesedrugs regularly is really
important.
Equally important is givingthem regularly on the gynecology
wards.

Yes, and I really like, kath, your analogy
about this is your baby's gutand this is your baby's lungs.
I'm definitely going to usethat.
I really like that way ofexplaining it to people.
Melanie, do you want to come in?

Yes, I was just going to go back to the study
that we did with the livedexperience of those patients,
and I think that many patientshave significant concerns about
taking medication.
So I was just going to read acouple of the comments that
relate to that.
The first was that one patient,for example, mentioned that
she'd taken medications forsickness and her baby was born
visually impaired and she didn'tknow whether it was

(26:30):
coincidental, but she'll alwaysblame herself.
So we know that there are gooddata that these antiemetics that
are suggested in the green topguidance do not increase the
risk of visual impairment.
But unless we empower women tounderstand the safety, the the
risk, you know we, we acceptthat three percent of the
background population will havesome form of congenital
malformation, and so you know, Ithink we've just got to be

(26:52):
really clear about the safetyevidence and we have a lot of
data now.
But another lady mentioned thather family accused her of
hurting a baby because she wastaking medication.
So I think it's not justeducating the woman, it's
educating those that are aroundher family, her friends, to
understand that that's okay.
So, and I often in clinical say, if someone's had severe

(27:13):
disease or has severe disease,I'll start you on one medication
, but it's very likely you'regoing to need two, three or four
and that you're going to needthem for a long period of time,
so that you're not constantlyadding another medication.
They're becoming increasinglyworried, but they kind of know
what they're going in for.

No, that's definitely true.
I've definitely been outside ofwork asked to speak to someone
with hyperemesis by theirparents as a kind of sort this
person out type thing, and notin a prescription way but in a
kind of yeah, this is normal.

(27:48):
Back to back to your point,kathy, about what is and isn't
normal, and we're talking aboutsomething quite extreme here.
So I wanted to bring in here abit about pregnancy sickness
support, because I know kind ofpeer support and support from
that for women may helpsometimes.

(28:11):
I think as healthcareprofessionals we change better
when women come and ask us forstuff.
So if we educate women and givethem the information, then they
can push us practitioners alonga bit.
So do you want to talk aboutthat?

I think that again, it's down to
validation.
Women sometimes feel that thatthis is worse than any of their
friends, worse than their family, and they feel out on a limb
and they feel they often feellike a failure.
And we sometimes in clinicMelanie and I have done this
we'll sometimes introduce womenwith terrible hyperemesis to
other women and that's a sort ofbuddy peer support mechanism.

(28:54):
So I mean there is a very goodcharity called pregnancy
sickness support that is run bywomen for women.
That's about education and alsohas a fantastic helpline when
women just feel desperate andthey.
What this charity does in myexperience, is it empowers the
women to go back to the healthcare professional and say you

(29:18):
know, I I need some drugs or Ineed more drugs or I can take
this drug for longer.
But also, some of these womenhave had recurrent, severe
hyperemesis and speaking towomen that have actually gone
through it again with support isenormously powerful to women
who might be in their firstpregnancy.

(29:39):
They sort of can see a way outand with all these you know,
third sector, hearing it fromanother sufferer is often more
powerful than hearing it from ahealthcare professional.
I think we as healthcareprofessionals think that we're
the, you know, the oracle andthat everyone's going to listen
to us, but actually we're not,and getting peer support is

(30:03):
phenomenally important in acondition such as this, I think.

Yeah, I agree, and the Pregnancy Sickness
Support have a lot of volunteerswho have suffered themselves
who provide peer support.
But I think that PregnancySickness Support have a lot of
volunteers who have sufferedthemselves who provide peer
support.
But I think that PregnancySickness Support is the UK's
largest Pregnancy SicknessSupport charity, but there are a
couple of others and I thinkwe're becoming more clear that,
depending on a woman'sbackground cultural background

(30:30):
depends on how acceptable it isto take medications and seek
seek help.
So I think there's a brilliantcharity called HG Help which
supports women from the Jewishcommunity, and there's a charity
called Mummy's Day Out whichsupports women of black
ethnicity with medicalcomplications.
So there are increasing numbersof charities which serve

(30:53):
different populations which Ithink we can be aware of.

I just want to make the point,
florence, that if we ashealthcare professionals had got
this right, then we wouldn'tneed these charities, and I'm
sort of embarrassed that womenhave to turn to the charitable
sector.
I'm not saying the charitiesare bad, that they're wonderful,
but they have been born out ofnecessity because of the

(31:20):
reluctance of healthcareprofessionals to help these
women, take them seriously and,as I said at the beginning, to
validate their symptoms andoffer them.
You know, the other thing thatthe Green Top Guideline now
stresses is the need for mentalhealth support and a mental
health assessment as part of the, as Melanie explained at the

(31:41):
beginning.
You know a lot of these women.
When I was starting out, it wasstill written in articles that
hyperemesis was because womenhad an unwanted pregnancy, they
didn't want to be pregnant, theywere rejecting the pregnancy,
and to be told that by a womanwho has no previous mental

(32:02):
health disorder is verydistressing and that, again,
that's a mindset that needs tochange.
It is the severity of thesymptoms, it is the desperation
that women feel that causes thesecondary mental health problems
, and we are.
We must know that, accept thatand ask women okay, you know,
we've prescribed this, we'veprescribed that, but you know

(32:24):
you're having a tough time.
How are you feeling?
What support do you have?
And and ask about their mentalhealth, because there are sadly
cases of suicide related to thiscondition, uh, which is a
tragedy, a preventable tragedyyeah, I.

I think that's partly why I tend to see some
of these women, because I have amental health clinic and
because there is that overlap.
But I think what you're sayingabout the mental health being a
secondary effect of having hadsuch severe hyperemesis is
really important to kind ofstate clearly rather than I

(33:08):
agree, early on in my career itwas very much.

Well , this is psychological issue in
the first place which reallyreally needs kind of a line
drawing through it now and youknow, given that what we know
about how mental health canaffect the pregnancy and later
bonding is another argument forearly and aggressive treatment
of hyperemesis.
These women go on to havesubsequent mental health

(33:34):
problems.
They have problems, fear ofvomiting, they have eating
problems, disorders of varioussorts.
So we must treat it properlyand aggressively and any mental
health issues that come out ofit that may also need treating
Just to come on partly ofrelevance to all the wonderful

(33:55):
charities that support women.

They also they signpost women to
where they can go if they're notmanaging to obtain the care
that they may need, and theyhave also supported research and
they're aiming to improve carethrough research as well, and
PSS supported the work thatMelanie and I did in
collaboration with them with thesurvey and some shocking

(34:20):
statistics that came out of that.
Just under 7% of the women thatwe surveyed had regular
suicidal thoughts and a thirdhad occasional suicidal thoughts
.
So the impact of HG to causesevere mental health problems is
massive and we all see in ourclinics women with
post-traumatic stress and wherethere are ongoing both physical

(34:43):
and mental health problems as aconsequence of having had the
condition.
So it really is very, veryimportant and the charities
helped us to identify thisbecause they really are
investing well thank you, Ithink that's really helpful and
also I take, melanie, your pointabout the cultural issues that

(35:06):
it's difficult.

You need to find the right, the right
support for for that particularindividual woman, because it's
not going to suit everybody.
So that's made me curious.
So I have an assumption and Idon't know if this is correct.
So I'd like you to tell me Isthere an ethnic difference in

(35:32):
prevalence or not?

Yes, there is.
A number of studies have shownthat HG is commoner in women
from non-white ethnic groups.
Some have shown that it'scommoner in women of both Asian
ancestry and African or Blackbackgrounds.
Melanie and I have been doingsome work in South London where

(35:57):
it is quite striking that HGseems to be commoner in women of
African ancestry and yet wedon't see considerably more
women from these groups in ourclinics.
So this raises additionalissues that we have to delve
into further.
Are we listening to women fromdifferent, different ethnic
groups?
Equally?

(36:17):
Do they have the same access tosecondary care?
So I think there is animportant piece of work to be
done there.
And then also thinking aboutsusceptibility is there a
biological reason for this?
Is it more social communicationbeing listened to?

maybe a bit of both there's so much to do in
this area and I think it's justbecoming more and more evident.
But I think and Kathy mightwant to comment but we also do
some pre-pregnancy counsellingfor patients who've had very
severe disease Florence and theycome back and we go through
some of the options and waysthat we can plan future
pregnancies, which perhaps wecan touch on in a moment.

(36:53):
But I think, anecdotally, allof us would agree that we see
women of white ethnicitytypically and all patients who
can advocate for themselves tobe able to access what are quite
rare pre-pregnancy counsellingclinics.
So I think you know, beyond thebiological aspects there's
there's a lot of work to be donein making sure that all women

(37:13):
are accessing like equal careyeah, I think I'm picking that.

I mean, we're doing a lot of work about
equality and equity and you know, it really strikes me that this
is a general condition whichhas been not ignored but not
properly dealt with, and thenfor it also to be more prevalent
in a population that we knowwe're not serving.

(37:44):
Well, it's, it's um, yeah,there's a lot of work to do,
like you say.
So we've talked a bit aboutkind of the negative impact on
women's health and the baby, butI don't know if you want to
expand a bit on that.
So, within the guideline, ittalks about things like preterm

(38:06):
birth and birth weight andweight loss for women and their
mental health.
And, melanie, you touched on Wwhen it goes in cephalopathy,
but I think there's also thatperhaps much longer term impact.
You know even things likefamily size.
I don't know if you want totalk a bit about the impact

(38:31):
women have talked to you aboutor that you've observed in your
research.

So essentially, when we did the study, we asked
, we asked quantitativequestions.
So we said you know, how manytimes are you vomiting?
How many of the pregnancies doyou have this vomiting in?
But we also had an open box,feedback comment at the bottom,
where people could just describe, or patients could describe,
their previous experience.
And we were surprised that over5 000 of the 5071 patients
wrote about their experience andkath and I felt that, having

(39:00):
had so many women share theirexperience, we only did them
justice if we were toqualitatively analyze those,
those data.
And so we went through andlooked for common themes and
this was um.
One of the themes that came upwas future pregnancy.
386 women mentionedspecifically that they would um,
had changed their plans for forfuture pregnancy but but even

(39:23):
worse than that, had beensterilized because they couldn't
have thought of a futurepregnancy.
And I think we do.
We do hear this in our clinics.
So I think, yes, family size isreduced, but patients going to
clear efforts to make sure thatthat doesn't happen.
And I think you know I feelenthusiastic and positive about

(39:44):
how we can offer pre-pregnancycounselling to these patients
and actually see patients havingbetter pregnancies.
So it seems very sad when womendon't always know the options
available to them in the futurepregnancy.

I have an anecdotal story to
follow on from that.
Melanie, a lady who I gavepre-pregnancy counselling to,
has recently got pregnant again,but with a sort of recipe for
what to take, and I suggestedthat she take pre-emptive Zonvia
, because that's the only drug,that for which there's data that
pre-emptively the symptoms canbe less severe if if you take it
at the time for positivepregnancy tests instead of
waiting for symptoms.

(40:25):
And she's taking that and anantihistamine in addition.
So she's taking effectively twoantihistamines.
But she messaged me today tosay you know, I thank you so
much because at this stage she'sonly six weeks, seven weeks,
pregnant at this stage.
In my last pregnancy I was bedbound and now I can function by

(40:47):
taking these two drugs.
And so it does preemptivetreatment and appropriate
treatment.
It works.
It works to change theexperience of women and I'm not
saying she's completelyasymptomatic, but she is able to
manage her condition and she'sable to, she's empowered now to
advocate for herself, to to getmore of the drugs, to to have

(41:11):
second drug, to have differentformulations of drug, because
she's information is power right.
So that's what all womendeserve and you know it's like
any aspect of medicine, we don'toperate in a sort of
patriarchal system.
Take these tablets, you'll getbetter.
It's educating women about whatto do for themselves and this

(41:34):
is just a nice recent example ofbecause normally you counsel
people and you don't often getto hear what happens.
So it was just nice of her toemail me and say you know, and
she's only got you know, she'sonly just pregnant, but already
she's having a very, verydifferent pregnancy and she's
not been admitted that's really,really lovely to have that.

Yeah, that feedback directly, which sort of
brings me to kath.
You talked briefly before westarted recording about the
implementation of guidance andI'm just listening to that,
thinking how many women actuallyhave access to that sort of
pre-pregnancy counselling andadvice that you're clearly

(42:18):
offering women on on your patch.
So is there some way that wecan get a better standard of
care or pre-pregnancy so thatthe woman knows from the get-go
what she needs and how to get it?

from the get-go what she needs and
how to get it.
Well, in terms ofimplementation, I'll start with
pre-pregnancy care, but I mightmove on to a bit more, if you'll
allow me so, for pre-pregnancycounselling, kathy, melanie and
I and a number of othercolleagues around the country
provide pre-pregnancycounselling and would welcome
anyone who is referred to comefor advice.
But hopefully we can improveimplementation of guidelines so

(42:59):
we don't have to be providingthis for everyone, and something
we felt after the survey studythat we'd put out and also
Melanie then designed anotherstudy that was very important,
where we studied the confidenceof GPs and GP trainees in one
country in Wales to prescribeguideline-recommended drugs for

(43:23):
hyperemesis, and the resultswere quite striking.
Many GPs were not confidentusing most of the drugs in the
guidelines.
The slight exception wascyclizine, but even thiamine
some were worried about beingharmful.
But when we asked them abouthow much education they'd had
and would they like more, theoverwhelming answer was we would

(43:46):
like more education about this.
So they acknowledged theydidn't know enough and on the
back of this and our ownexperiences, cathy, melanie and
I decided to run a policy lab.
We worked with King's PolicyInstitute and invited a lot of
stakeholders to address thequestion why, when we have
really good guidelines, are theynot being followed and how can

(44:07):
we progress implementation?
It was a phenomenal day.
It was a phenomenal day.
Some very impactful peopleattended, including Dame Leslie
Regan, lucy Chappell and manyand we came up almost with a
roadmap of what we felt we hadto do to shift this.

(44:28):
Melanie has been amazing atworking, at implementing a lot
of it and we really hope we willmake a difference with this.
We're working with thedifferent Royal Colleges having
standardised guidance which isbeing circulated alongside the
RCOG guideline and Cathy andMelanie may want to say more
that is approved by, for example, the College of Emergency

(44:49):
Medicine, so a simple flowchartfor people to follow from
different specialties.
We're working with theDepartment of Health to have HG
hopefully mentioned in theWomen's Health Strategy.
We're working with the RoyalCollege to ensure there are
questions about the condition inthe exam, so everyone will be
reading and up to date, and soon.

(45:10):
Melanie or Cathy, would youlike to say any more about the
steps to implementation?
Melanie or Cathy, would youlike to say any?

more about the steps to
implementation.
Firstly, to congratulateMelanie for having the idea to
have the different appendicesfocused on the different
healthcare practitioner groups.
So there's one for emergencygynae units, one for inpatients,
one specifically aimed at GPs,one for emergency medicine.
They're all subtly differentbased on the perspective of

(45:37):
those healthcare practitioners.
But I do think it's not asecret that the biggest barrier
to accessing care, I think forhyperemesis, is primary care and
the GPs, and that's not theGP's fault, it's because they
follow a guideline that is wrong, and so we decided very early

(46:01):
in the policy lab that everyonemust follow the same guideline.
So instead of writing aguideline under the auspices of
the RCOG and then watchingeveryone else write another
guideline, we thought, well, whydon't we have it?
Everyone else must follow thisguideline, so that.
Hence the appendices thatMelanie developed.

(46:21):
But the Royal College of GeneralPractitioners really rely on
something called clinicalknowledge summaries CKSs they're
called which are synthesis of,or syntheses of, nice guidelines
or Syntheses of NICE guidelines, and one of the aims of the
Policy Lab is to engage withNICE to change that clinical

(46:41):
knowledge summary and allow themto use either the appendix or
write another clinical knowledgesummary that says the same as
the appendix, because when youread that clinical knowledge
summary you realise why GPs arereluctant to prescribe on
Danstron, prescribe recurrentcourses of metoclopramide.
So I'm not GP bashing here, I'msimply saying that we have to.

(47:04):
This is a policy implementationissue.
Yes, and most women willapproach their general
practitioners before they go toan emergency gynae unit, their
general practitioners beforethey go to an emergency gynae
unit.
So we need to imagine all thegynae time that would be freed
up if this condition wasproperly treated in primary care
it's.
You know we plan to docost-effective analyses to

(47:27):
demonstrate that it's reallyworthwhile prescribing
antiemetics according to theguideline to prevent visits to
early gynae unit, preventadmissions, prevent lost time of
work, as kath was sayingearlier.
Yes, sorry, I forgot what thequestion was.

Now, that's fine, melanie I?

um, I was just going to say I mean, gps have
have such wide knowledge, don'tthey?
And I think the thing that cameout of that study that we did on
in the gps in wales was thatthey they wanted access to
evidence-based guidance, theywanted to be signposted to the
right thing so that that theycould do the right thing.
Um, and just to kind ofreiterate Cathy's point about

(48:05):
people go to primary care first.
We did a service evaluation ofthe patients that came to St
Thomas's and in our obstetricunit the most severe hyperemesis
patients come to us.
So we looked at the 30 patientsthat had been referred most
recently and between 30 patientsthey bounced between 206
appointments, whether that be inprimary or secondary care

(48:27):
between them, and for themajority it was only once they
were prescribed an antiemeticthat they stopped moving between
the different services.
So we watched, we kind ofplotted every single place that
they went and over half of those206 appointments was in primary
care and most patients for thefirst three, four, five visits

(48:49):
didn't actually receive anantiemetic.
So I think that by implementingthe guidelines as we're
discussing will reduce not onlythe patient burden but the
burden on the wider NHS.

That sounds such a valuable piece of work.
I mean, I know women arebouncing around, but that's
that's really quitedisproportionate amount.
That's that's really useful.

And these are patients that are largely
bed-bound.

It's because they're desperate and
they don't get what they want.

Yes, I can see that.

Professor Cath Williams (49:22):
Another outcome that I'm just so
delighted Melanie has achievedis to obtain some funding so we
can do a health economicevaluation of models of care for
HG and, if nothing else, willchange practice.
Hopefully, if we do showobjectively with proper health
economists, that managing womenwell will save money as well as

(49:44):
improving outcomes, we hope thatwill make a difference.

Yeah, I can see that that, plus what Cathy
was saying earlier about makingit easy for the GPs, so they've
got this clear summary of thisis the go-to making it easy,
implementation and saving money.
You're you're definitely kindof on the right tracks there.
I wanted to talk a little bitabout the future, because

(50:07):
there's been such an incrediblerecent development or certainly
for me, recent the advent of, ordiscovery of, the impact of,
gdf 15, the hope that that mightbring to women in terms of a
people appreciating this is aphysiological, physical issue

(50:30):
again, like we've been talkingabout with um, a hormonal basis,
so that we can actuallyunderstand what it is and why
it's happening, but also hope interms of, therefore, potential
future ideas for treatment.
I didn't know if you wanted totalk about that a bit.

I could tell you a little bit
about this beautiful piece ofwork that has recently been
highlighted.
The person who really broughtour GDF-15 to our attention in
the context of HG was MarlenaFascio, who works in the States.
She's a scientist who had HG inher own pregnancy and
subsequently did some reallylovely work, including genetic

(51:14):
studies.
Where she did.
She looked at all the potentialmarkers across all the genome
and found a couple of main hits.
One of them was GDF-15.
And she did this with a reallysmart idea.
She worked with 23andMe.
They had a question aboutvomiting in pregnancy and then
looked at all the data that hadbeen collected.
So it was a very smart way totry to understand whether

(51:37):
there's anything geneticunderlying HG, and she found
this.
In a sense, one of the toppeople in the world working on
GDF-15 is Steve O'Reilly fromthe UK, who's based in Cambridge
.
So his team and they gottogether and their collaborators
looked at this in a number ofways and they showed a variety
of things, but essentially whatthey showed was that GDF-15

(52:00):
concentrations in the blood area bit higher in people who have
HG compared to those that don't.
And then Marlena did anotherstudy of almost 1,000 women
where she confirmed theassociation with GDF-15.
And she found 10 people with agenetic change that was almost
certainly disease-causing inGDF15.

(52:20):
So there are certainly asubgroup of people where there
could be mutations in the geneand where the concentrations are
different.
But the strange thing whichthey demonstrated very elegantly
, the genetic change that theyidentified in those 10 cases
actually causes less to be inthe blood.
But Steve's work incollaboration with the team in

(52:43):
Cambridge had shown higherconcentrations in the blood, so
they went on to show that itcomes from the baby and the
placenta.
So what they're proposing isthat women who have genetic
changes in GDF-15 may have lowerlevels when they're not
pregnant, so then they're moresensitive to the higher levels
when they are.
And the other interesting thingabout GDF-15, it binds one

(53:05):
receptor in the brain thatmediates aversion responses and
also nausea and vomiting fromchemotherapy agents.
So it almost certainly is atrigger zone for clinical
features of HG and this raisesthe possibility of designing new
treatments.
But of course there's a lot ofwork to do because GDF-15 is up

(53:27):
in all pregnancies, so it needsto be established how necessary
it is, whether it would matterblocking it.
But we've got the right peopleworking on it.
They've done beautiful work todelineate this so far, so I
think it's very positive, as yousay, firstly, women with HG
know that there's a biologicalexplanation for why this can
happen and there's the potentialfor new medicines.

(53:49):
One or two other things peoplemight be interested in the work
that they've done has primarilyused samples from women of
European background.
So we do have to do more worklooking at other ethnicities and
other possible causes because,as with all conditions in
pregnancy that I'm sure you talkabout a lot, there isn't just
one cause and it's very likelythat there will be other causes

(54:11):
genetically found, and we allknow there are other clinical
conditions associated with hg aswell.
But if we individualize what weunderstand about causes, we can
individualize treatments andthat can only make the treatment
better yeah, thank you.

It did seem to me like a massive stride
forward very much so yeah, soand there to be applauded for
that.
Yeah yeah, really incredible.
And I listened to him uh, talkon it on another podcast um, the
midwife's cauldron, which isfantastic, and he talked about
that fact that it's the samereceptor for vomiting after

(54:52):
chemotherapy, and that was likea light bulb for me.
You know, we're telling womenon the one hand, oh, man up,
it's just a bit of sickness, andthen we're telling people on
the other hand, oh, you'rehaving chemotherapy, you need
lots and lots of drugs, and thatmassive disparity that actually
they're identical.
It's just it really kind ofbrought it home to me.

(55:13):
It's just it really kind ofbrought it home to me.
So I'm conscious we're comingup to an hour and whether we
should think about what's ourtake home message.
So I normally end the podcastwith a kind of zesty bit a bit.
If you remember this one thingwhat do you want people to

(55:35):
remember from our conversation?

Any thoughts?
Listen to the women.
Listen to the women and takethem seriously.
And I guess what I?

want to say is follow the guideline.
You took the words out of mymouth, Cathy.
Those were the two comments Iwas going to make.
Listen to the women and followthe guideline.

It has been written by Cathy and Melanie,
amongst others, and is fantastic.
Yeah, I think that's verysimple and very straightforward
Listen to and believe the womenand follow the guideline.
I don't think you could sayanything better than that,
really, so, yeah, thank you very, very much.
It's been absolutely brilliantto have the three of you share
your wisdom on this topic and Ireally hope that by doing this

(56:27):
today, hopefully we can get theword out to a few more people
and a few more women who canadvocate for the right treatment
as well as hopefully steeringsome can advocate for the right
treatment as well as hopefullysteering some health
professionals in the right way.
So, thank you, so so much.
Thank you.
Thanks, florence.
Thank you.
Florence, I very much hope youfound this episode of the OBSPod

(56:49):
interesting.
If you have, it'd be fantasticif you could subscribe, rate and
review, on whatever platformyou find your podcasts, as well
as recommending the OBS pod toanyone you think might find it
interesting.
There's also tons of episodesto explore in my back catalogue,

(57:12):
from clinical topics, my careerand journey as an obstetrician
and life in the NHS moregenerally.
I'd like to assure women I carefor that I take confidentiality
very seriously and take greatcare not to use any patient
identifiable information unlessI have expressly asked the

(57:37):
permission of the personinvolved on that rare occasion
when it's been absolutelynecessary.
If you found this episodeinteresting and want to explore
the subject a little more deeply, don't forget to take a look at
the programme notes, where I'veattached some links.

(57:58):
If you want to get in touch tosuggest topics for future
episodes, you can find me attheobspod, on Twitter and
Instagram, and you can email metheobspod at gmailcom.
Finally, it's very important tome to keep the Obst Pod free

(58:21):
and accessible to as many peopleas possible, but it does cost
me a very small amount to keepit going and keep it live on the
internet.
So if you've enjoyed myepisodes and, by chance, you do
have a tiny bit to spare.
You can now contribute to keepthe podcast going and keep it

(58:44):
free via my link to buy me acoffee.
Don't feel under any obligation, but if you'd like to
contribute, you now can.
Thank you for listening.

All Episodes

Episode Transcript

Popular Podcasts

Bookmarked by Reese's Book Club

On Purpose with Jay Shetty

Dateline NBC

.css-15opob5{left:0;position:absolute;top:0.8rem;} All Episodes

.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}Episode 169 Hyperemesis

Episode Transcript

Popular Podcasts

.css-r6mb8g{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:1;overflow:hidden;}Bookmarked by Reese's Book Club

On Purpose with Jay Shetty

Dateline NBC

All Episodes

Episode 169 Hyperemesis

Bookmarked by Reese's Book Club