The WRISK Project is a collaboration between researchers, advocates, healthcare professionals, and members of the public. Our Oversight Committee members bring their own expertise and experiences to the project- and help keep us on track! As we are nearing the end of the WRISK Project’s funded period we’re reflecting on our personal and professional highlights of the last few years with “WRISK Conversations…”
Our latest conversation is between Caitlin Dean, Chairperson for Pregnancy Sickness Support and Clare Murphy, WRISK Principal Investigator and Chief Executive of BPAS.
Clare Murphy: I’m Clare Murphy and I’m the principal investigator of WRISK and I have known Caitlin for… I’m going to say for six years now and I remember, basically, I read a book by Caitlin about women’s experience of Hyperemesis Gravidarum (HG or hyperemesis) and their inability to access the medications they needed and how sometimes that results in them having to end pregnancies that they wanted and I knew this was something we had seen in the past at BPAS. And so I reached out to Caitlin and I wasn’t quite sure how she would respond because I had a bit of a girl crush on her. She replied immediately, and we decided to put together this report about women’s experience of hyperemesis in in pregnancy and needing to seek abortion care as a result. We met up and Caitlin, literally on the train home, wrote the report and it was a match made in heaven. We were thinking about the issues around women being denied medication because of fears about the impact on their fetus. This then paved the way for the ideas behind the WRISK project: what the consequences are when we get risk messaging wrong and how we can improve it. Do you think that’s a fair summary of our relationship Caitlin?
Caitlin Dean: Yes and the girl crush is totally mutual! So I’ll introduce myself; I’m Caitlin Dean, the chairperson for Pregnancy Sickness Support and a specialist in the condition hyperemesis gravidarum (HG)- which I suffered from myself. Pregnancy Sickness Support is a charity which supports women with all degrees of pregnancy sickness, but realistically women with regular pregnancy sickness, commonly known as morning sickness, don’t generally need our support. It’s more often women at this severe end of the spectrum who get in touch with us and we provide information about treatments available and doctors who provide services in the area. We can also match them for one-to-one peer support with another person who has been through the condition themselves.
A big part of our aim is to support women who feel like they’ve got no other option other than to end a very much wanted and tried for pregnancy and to get through it, without having to resort to termination. The reality is that a lot of women when they contact us are at that point of thinking there’s just nothing else they can do and they’re being denied treatment and denied medication. Occasionally we get someone who actually has been given all the medication possible, and still is so seriously unwell and termination really is the only option to cure the illness for them. Generally, the women who contact us, the pregnancies are very much wanted and often tried for. We’ve had women who conceived through IVF and are considering ending their pregnancy because of hyperemesis, so we support them. We raise awareness and we try to raise education levels amongst healthcare professionals, because it is depressingly low still. It is improving, but it’s amazing how many healthcare professionals don’t know anything about hyperemesis at all. As you said Clare, we did the report to try and shed light on that and we’ve done some more work around termination which has come out in the last few weeks. We collaborated with the BBC on a survey, and it found 5% of women who completed the survey had terminated because of hyperemesis in the last few years. It also showed that a lot of women become suicidal from their symptoms and that’s also massively under appreciated. Considering this research was done after our Support Network was established and after the report we published, I suspect that the reduction in the rate from what we worked out was about 10% down to about 5% now. Part of that is down to the work of our charity and the greater awareness in society and amongst health care professionals.
Clare: I think these are all the really important themes and from my perspective, being pro choice is being able to terminate pregnancies, but also supporting and empowering women to continue wanted pregnancies. I think the worst possible outcome for a woman is not to get the treatment that she needs to continue a wanted pregnancy. It’s brilliant to see things are getting better, but we know how women with severe pregnancy sickness can be treated when they present to their GP and are patted on the head and told “that’s part of being pregnant.” Yes, women expect to feel sick as part of a healthy pregnancy, but actually, if a woman is going to her doctor and saying “I feel so ill I can’t do my day-to-day things, I can’t look after my kids,” then she needs help. I think it’s that first step of taking women’s voices and experiences seriously and not waiting until it’s pervasive.
There’s this huge focus on taking medication being risky, meanwhile there’s a massive under-appreciation of the risk of poorly treated or untreated hyperemesis.
Caitlin: Yeah exactly because if a woman has gone to the effort of getting a GP appointment and seeking help for it then clearly it’s not a normal part of pregnancy. Women don’t generally complain about regular pregnancy sickness. I can tell you that at Pregnancy Sickness Support we do not get calls about regular morning sickness.
That said, there are very occasional cases where women have psychological conditions such as emetophobia (fear of vomiting) where even just a bit nausea can be extremely distressing, and they need proactive help earlier. One of the major barriers to treatment and something that I’ve really enjoyed working with WRISK on is about the way women are presented with “risks.” There’s this huge focus on taking medication being risky, meanwhile there’s a massive under-appreciation of the risk of poorly treated or untreated hyperemesis. Everyone is obsessed with the health of the fetus but they’ve never found any problems caused by the medications used to treat hyperemesis. For example, ondansetron is highly researched now and the only association is with this tiny increased risk of abnormal cleft which is more likely to do with malnutrition than the ondansetron. We know that the medications are not really causing problems, yet if you don’t treat the woman with medication there’s a 5 to 10% chance that the baby will die from termination. There is a significant risk that the mother will end up with severe mental health problems – post traumatic stress disorder and postnatal depression -because of this uncontrolled hyperemesis during the pregnancy.
Clare: That’s the crux of WRISK: when it comes to pregnancy, we never think about risk in terms of leaving a condition untreated, we think about it in terms of the risk of the intervention. What we see with pregnancy sickness and denial of treatments you also see with access to other treatments as well, particularly antidepressants. What worries me, and this absolutely came out in in the WRISK findings, is the way in which women are denying themselves treatment. Even women being prescribed treatments for severe pregnancy sickness, but not taking them or coming off their antidepressants or not using their epilepsy medication. They are prepared to put their own health at risk in order to in order to protect their pregnancy.
Caitlin: And all of it’s based on false knowledge. It’s based on this concept that the medications are going to cause harm and that being starved and dehydrated is fine, and that’s not true. There’s a clear association in the literature between malnutrition in the first trimester and a significant increase incidence of autistic spectrum disorders and Cardio metabolic disorders in later life. Women are making these decisions based on half the information. That’s not a balanced decision-making process if you only have half the information. With pregnancy sickness, there is still this old wives’ tale that the fetus will be fine, takes what it needs and you may be starving, but your body will give it what it needs.
Clare: Yeah, I think there’s still the cultural underpinning of maternal sacrifice.
Caitlin: Yeah, it doesn’t matter what happens to you, you should absolutely be willing to suffer and die for your children, but there’s really no need.
Clare: One of the longer-term goals of the WRISK project is recalibrating some of these conversations; the narrative of mother versus fetus. Maternal health is absolutely part of fetal health as well. In meeting women’s health needs and giving women the confidence to take their own health needs seriously during pregnancy they won’t feel that they’re risking the health of their fetus. I think there’s so much work to do. Part of our project has been looking at how scientific studies get turned into newspaper headlines. One of the really interesting findings of our paper is how the focus of research is often on women’s behaviour in pregnancy and how that impacts upon the fetus. For example, how much they drink, whether they’re overweight, and how that impacts upon their baby rather than anything being about women’s own health. I think that’s the cultural shift we still need to push towards.
There’s a huge amount of self-blame around it.
Caitlin: Even the women who come to our charity talk about becoming dehydrated and malnourished like it’s their fault. They don’t recognise that it’s really not their fault that they’re starving and dehydrated. It’s because they’ve got an illness that means that they cannot eat and drink very much and what they do eat and drink comes back up. There’s a huge amount of self-blame around it.
Clare: I suppose healthcare professionals still feel they’re living under the shadow of thalidomide and it’s quite difficult sometimes to make decisions about prescribing medications in pregnancy.
Caitlin: That was a very long time ago and we learned a huge amount from it. Medications such as ondansetron have been so heavily researched with huge datasets, vast numbers of exposures assessed for outcomes, and it has no association with cardiac malformations or congenital malformation or anything even vaguely like we saw with thalidomide. However, there are regulators who use scaremongering language. For example, the European Medicine Agency took it upon themselves to declare that an association with an additional three in 10,000 oral clefts in pregnancies exposed to ondansetron warranted guidance that women using it should be on contraception and it shouldn’t be used in the first trimester. I think it’s massively out of proportion to the actual risk and doesn’t recognise the reason why the population in question are taking ondansetron – severe pregnancy sickness – and therefore will have been a population of women who were predominantly malnourished and dehydrated and not taking their folic acid or any other vitamins, minerals and micronutrients. That’s probably why there’s an increased incidence of oral clefts in the population of women who need ondansetron in pregnancy. When a GP sees that statement from the European Medicine Agency it does put them in a difficult position. We have a major problem with our regulatory authorities, although here in the UK the MRHA have done a decent job on that.
Clare: Yeah, the MHRA have now set up a Safer Medicines in Pregnancy and Breastfeeding Consortium, which is looking at it from both angles, so both the harms medicine can cause and the harms of not enabling women to use the medications they need in pregnancy. I think it speaks to the broader problem, and we’ve seen this with the COVID-19 vaccine; there aren’t the structures to routinely include pregnant women in research. But it feels like the discussion that’s been going on, particularly in the last few months, is going to lead to some change in regard to this. People are increasingly recognising the problem of the routine exclusion of pregnant women from clinical trials.
We need to realise that the exclusion of women from trials on the ethical grounds of unknown harms to the fetus is completely old fashioned and incorrect.
Caitlin: Yeah, I think there’s definitely a turning of the tide about that and that is the legacy from thalidomide. We need to realise that the exclusion of women from trials on the ethical grounds of unknown harms to the fetus is completely old fashioned and incorrect. The MRHA consortium is really pushing ahead with that, but we do need the rest of the world to catch up as well. Like I said the European Medicines Agency is very outdated and uninterested in the topic altogether. So if we can lead the way with that then that would be great.
Clare: We’ve touched on a lot, but what you think is one thing that could be done to improve things for women with HG?
Caitlin: The greatest improvement for women with HG would be if healthcare professionals would start to talk not just about the hypothetical risks of medications for this condition, but if they were to also address the benefits of medication and the risks of not using a medication when you have a very serious medical condition in pregnancy.