Hyperemesis Gravidarum Awareness

Wednesday 19th July 2023 Westminster Hall

16:00

[Sara Britcliffe (Hyndburn) (Con)]

I beg to move,

That this House has considered awareness of hyperemesis gravidarum.

It is a pleasure to serve under your chairmanship, Ms Nokes. The Minister has been very encouraging of this debate, and I thank her for meeting me recently to discuss hyperemesis gravidarum—more commonly referred to as HG—and how we can increase awareness of this cruel condition, reduce stigma around it and improve treatment and care for pregnant women.

I became familiar with the condition because of tragedy. One of my constituents, Jessica Cronshaw, was 28 weeks pregnant with her baby Elsie when she passed away after suffering with HG and being left unable to eat, drink or complete daily tasks. It is a truly horrific story, and before turning to what we need to do to ensure tragedies like that are prevented in the future, I want to thank Jess’s family and her partner Eddie, who are in attendance today, as well as Dr Caitlin Dean and Charlotte Howden from Pregnancy Sickness Support for all the help that they have provided.

I did not know Jess on a personal level. She was the year below me in school back at home. So rather than me talking about Jess, I wanted to use my privileged position of a Member of Parliament to recount the words of Jess’s family about her life and her struggle with HG.

“Our Jessica was a strong and determined 26-year-old woman, whose bright blue eyes lit up any room. Her infectious grin and smile partnered with her clumsy sense of humour was enough to leave people in floods of laughter. Jess's capacity for love and embracing any challenge, no matter how big or small, was admired by us all.

Jess was a dedicated local primary school teacher in Accrington. Her passion for her children shone through in all of her preparation, planning and delivery. She would often spend many hours outside her working day organising and creating school projects to give her pupils the best possible experience. Jess took such pride in her career and her work ethic was unmatched.

Jess also had a passion for her fitness. She without fail would walk up our local hill every morning at 5am come rain or shine. Jess benefited enormously from her exercise routines and this was the reason she was so dedicated to it. She eventually set her own business up as an online coach providing nutrition and exercise plans for many people. Jess inspired and helped so many people feel the benefits she was all so familiar with.

She cherished quality time making memories with her family and friends, and you would often find her hiking up mountains with her Dad, brothers and partner Eddie or enjoying quality time with her Mum and Gran. She was a beloved friend to many, providing endless stories of her adventures which always resulted with everyone crying with laughter.

Jess as a young woman found true happiness in her life. She was content, she was strong and was a fierce, confident, driven woman. She found true love in her partner Eddie and both were overjoyed with the news they were expecting their first baby in May 2022.

Unfortunately, Jess quickly learnt that her pregnancy was going to be far from the smooth pregnancy a lot of other expectant mother’s experience. Jess went from her outgoing and independent self, exercising every day without fail, working full time for her children at school and maintaining her coaching business that ran alongside this, to being completely bed bound from 6 weeks pregnant. Jess could not stop vomiting and when vomiting eased, she continued to feel nauseous. All her usual comforts, whether it was a cup of tea, enjoying a TV series or exercising became far from her reality throughout the duration of her pregnancy.

Jess was admitted to A&E at 6 weeks pregnant due to being completely debilitated with her symptoms of hyperemesis gravidarum. She was unable to eat, unable to keep fluids down and was absolutely floored being left unable to complete basic tasks independently. Jess received the diagnosis a week later and was admitted on one occasion for an IV drip for hydration. Jess’s symptoms, despite being tried on 4 or 5 different medications, continued up until she was 28 weeks pregnant.

These symptoms of HG are often unbearable and incomprehensible for women, not only the physical trauma their bodies endure but also their emotional and psychological health is hugely impacted. There is an impact to the family and friends around sufferers who often feel helpless. Jess at one point said she felt like she was dying due to how severe her symptoms were. If the care around sufferers of HG isn’t good enough, the outcomes can be catastrophic.

For Jess and her beautiful daughter Elsie and for all of Jessica’s family and friends her battle with HG resulted in the most devastating outcome. We are left with a hole in our lives and hearts that can never and will never be filled. We lost our Jess and Elsie tragically when she was 28 weeks pregnant, the severe HG symptoms became unbearable for her. On the 14th November Jess could go on no longer, her and Elsie survived for 5 days on life support and Elsie was christened with the family around them both, before Elsie’s life support was turned off on the 18th and Jess’s on the 19th.

Jess and Elsie’s passing was preventable, Jess wanted her baby girl, and she had her full life ahead of her. If it was not for this incapacitating condition or if there was adequate training, awareness, knowledge, care, and support from professionals who come into contact with any HG sufferer then we as a family would’ve had the chance to see our beautiful Jess become a mother and flourish. We as a family hope and pray that no family must ever see the suffering we saw Jess experience throughout her pregnancy, a time that should have been the happiest time of her life.

Every day we all have to wake up with ‘what if…what could we have done more’ and we end our days with the same thoughts. This is our reality now. Jess, even when bed bound, found the strength to lift her head up from the pillow and use her platform on social media to raise essential awareness of HG. Jess made the courageous start of her legacy and now as her family, friends and local community it is time for us to ensure essential change starts now to the care every HG sufferer receives when they need it the most.”

I am sure that you will agree with me, Ms Nokes, that this is incredibly moving. It is a real-life example of why we need to enact change. Even in their darkest moments, the family were incredibly grateful for the care provided by the nurses at the Royal Blackburn Teaching Hospital on the critical care ward, including nurse Danielle Turner, who changed all her shifts to be with the family in Jess’s final moments. They were also grateful to the staff at the neonatal intensive care unit at Burnley General Teaching Hospital, who brought Elsie to Blackburn Hospital so that she could be christened among family and friends.

For those not well versed in this condition, HG occurs only during pregnancy, and was—and, to a large extent, still is—stigmatised. If women suffering from the condition cannot be rehydrated, they could die of starvation or dehydration. HG is still a severe and potentially life-threatening condition that can have profound effects on the sufferer’s health and wellbeing. Clinical manifestations of HG can include loss of 5% or more of pre-pregnancy weight. While there are more modern treatments, such as IV fluids, HG can be seen as a mental health problem; people might deem the sufferer to be making it up, or think that it is all in their head. That misses the point. Mental health struggles may be a symptom of HG, but they are not the cause. A lack of awareness, and stigma towards those seeking support, is sadly all too common. There can be a dismissive attitude to women’s suffering during a first pregnancy, and notions in some quarters that sufferers simply were not prepared for the trials and tribulations of morning sickness.

The term “morning sickness” is harmful; pregnancy sickness, the correct terminology that we should move to, does not occur only in the morning. That is an unhelpful perception that impacts on women’s suffering. If we are to have meaningful change, we need to look at the support required from the outset by those suffering from HG. Many women with HG who have not suffered from it before will understandably be vulnerable, and will struggle to come to terms with their condition and what it means. They should have access to better perinatal mental health support, so they have someone to talk to who understands HG. In addition, many suffering from HG need proper nutritional advice. An inability to keep down food and water means that both mother and child can be at risk of malnutrition. Proper nutritional advice is sparse for the women suffering from HG. I have heard reports of women going all day on a single biscuit, or half a can of flat Diet Coke. That is not a sustainable situation.

Several of Jess’s interactions with medical professionals were over the phone, and not in person. This, again, is not uncommon, and reflects missed opportunities for those professionals to see for themselves how HG is impacting a woman going about her day-to-day life. Face-to-face appointments should take place as home visits; for women suffering with HG, driving any distance, let alone to a hospital, can seriously exacerbate their health condition.

Given these three issues—the lack of proper mental health support, proper nutritional advice and face-to-face time with medical professionals—I am sure the Minister will agree that the fact that there is no compulsory training on HG for midwives surely needs to change. An appointment with a midwife tends to come in week nine of pregnancy or later, so many women suffering from HG will see their GPs first, who do not receive basic diagnostic training. That compounds the issue. Around 1% of the pregnant population suffers with HG. That alone is thousands of women at any one time, but the figure does not account for those women who remain undiagnosed because midwives simply are not aware of HG and how it can present in pregnant women, or because GPs do not have the relevant diagnostic training. I am aware that midwives have compulsory training on dementia, which prompts the question: how often do midwives treat people with dementia? I suspect they do so very infrequently—much less frequently than they treat people with HG, which occurs only during pregnancy.

Moving on from diagnosis and early intervention, many women require medical treatment and drugs to help ease their symptoms, but the system is complicated and inconsistent; the responsibility is often left to the woman, and there is an attitude of “on her head be it” after prescription. In any other situation, if a person was vomiting continuously, there would be extensive medical testing, but with HG the usual response sadly seems to be, “It’s just bad morning sickness”, even though HG is the most common reason for hospitalisation in early pregnancy. Furthermore, the rate of therapeutic termination of a pregnancy because of HG is estimated to be 10% in the UK, and that accounts for further morbidity and admissions.

We have licensed drugs to help ease symptoms of HG, such as Xonvea. However, it is not accessible to many women, and its availability is something of a postcode lottery. Several hospitals have banned the use of the drug Ondansetron in the first trimester of a pregnancy due to historical stigma, and without hard medical evidence. Ondansetron can prevent malnutrition in early pregnancy, which can be harmful to not only the woman, but the foetus.

We need a much more evidence-led focus on medications to treat HG—one that neither denies women access to valuable treatment nor, when medication is prescribed, makes women feel that they are taking a risk with their baby’s wellbeing, and taking their baby’s life into their own hands. Research from the US and the UK has found that women with pregnancy sickness tend to have much higher levels of the appetite protein growth/differentiation factor 15, or GDF15; their placentas make incredible levels of it during pregnancy. Researchers believe that that may be a genetic cause of HG. I know that there are significant challenges associated with testing new medications on pregnant women. However, if the issue is approached carefully, new GDF15-based drugs could improve treatment options for HG and definitively prove that GDF15 causes the condition. I am told that the Medicines and Healthcare products Regulatory Agency is keen to do more work on in-pregnancy trials to improve treatment for pregnant women, and that is something that the UK should consider.

On a societal level, we need to look at this through the prism of women’s health. Young mothers are often stigmatised for struggling with HG, due to outdated notions that they are simply being soft. In addition, women whose first language is not English will struggle to advocate for themselves. It is hard enough for a woman who does speak fluent English to do so when suffering with HG; navigating the complex system is incredibly difficult for those who do not. Although there are protections in law for women with pregnancy-related conditions, there may be issues with maternity pay for those with HG. Women suffering from HG may face acute symptoms both in the qualifying week for maternity pay and before. That means that calculations for maternity pay can be based on statutory sick pay, rather than their actual salary. That is an added stress that no woman needs when going through such a traumatic experience.

I will conclude by again mentioning Jess and Elsie. Their story is sadly typical of that of many women who suffer from HG, who may face a lack of mental health support and nutritional advice; seemingly no knowledge of the condition among midwives; and a reluctance to prescribe medication. Jess and Elsie died because, put simply, there is still not enough awareness of the condition in the medical community. There is a lack of formalised support at diagnosis, and treatment with medication is often not based on science, but on stigma. I hope that Jess and Elsie’s story will be a starting point for change. We need to advocate for a more harmonised approach to HG across the country, which incorporates training, support for women and medication. We need that to prevent more tragedies, and to get better outcomes for pregnant women across the United Kingdom. I hope that with the Minister’s help, we can prevent anybody from feeling as helpless as Jess did, and can ensure that her memory lives on by getting the right support for women in the future.

[Caroline Nokes (in the Chair)]

I thank the hon. Member for bringing this issue to the attention of the House.

16:16

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

It is a pleasure to serve under your chairmanship, Ms Nokes. I begin by thanking my hon. Friend the Member for Hyndburn (Sara Britcliffe) for a very moving speech. I express my condolences to Jess’s family and to Eddie, her partner, and let us also remember baby Elsie. My hon. Friend could not have expressed any better the impact on a whole family, a community and an individual, and I agree with every word she said. We met recently to discuss Jess’s case, and I am happy to continue to work with my hon. Friend on this issue.

Unfortunately, there are many women like Jess going through this. They are probably watching or listening to the debate, and will take comfort from the fact that they are not on their own, and that there are many others who feel like this. Every pregnant woman who is living or has lived with hyperemesis gravidarum or a difficult pregnancy—particularly those like Jess, who had such an active life before becoming pregnant—will recognise that isolation and loneliness. It is an all-encompassing feeling of not being physically well, which takes a toll on mental health as well.

To echo my hon. Friend’s words, hyperemesis gravidarum is a severe form of nausea and vomiting. She is right that we need to move away from the term “morning sickness” and to instead use the term “pregnancy sickness”, and we should also be aware that HG is very different from pregnancy sickness. Any woman who has experienced nausea or vomiting during the early stages of pregnancy knows how debilitating that is. However, when that continues week after week, and they see other pregnant mothers glowing and thriving in pregnancy, and sharing photos on Instagram and social media, it adds to the difficulty, and the feeling of isolation because they are not dealing with pregnancy in the same way as many others.

Hyperemesis gravidarum can affect between one and three in every 100 pregnancies, so it is not a small number. Thousands of women are affected. It can affect an individual’s mood and their ability to work. Many mums are keen to work for as long as they can, because they want to take as much maternity leave as possible after they have given birth. The effect of not being able to work, and the effect of HG on home life, particularly if mums have other children for whom they care, cannot be overestimated.

Although most women can be treated at home or as an out-patient, some need to be admitted to hospital. As my hon. Friend said, if they are not able to eat or keep fluids down, it is vital that medical care is there when they need it. Too many women are left feeling isolated and unsupported. There is stigma and a taboo; there is little understanding that this condition is very different from morning sickness, and that it affects women’s mental health, as well as their physical ability to cope with their pregnancy.

I absolutely agree that more needs to be done to address this issue. The National Institute for Health and Care Research is awarding funds for research on the causes of the condition, the way it can be managed and the nutritional impact on pregnancy. The women’s health ambassador, Professor Dame Lesley Regan, who is an obstetrician, is keen to look at hyperemesis gravidarum, because in her clinical practice she has seen its effect on women. She will host a webinar on hyperemesis gravidarum on 27 September in her role as chair of Wellbeing of Women, which is a leading women’s health charity. That public webinar, which is free for people to sign up to and attend, will explore the experience of patients with this condition and provide options for treatment, support and self-care. I encourage anyone who has been affected by it or has an interest in it to sign up. The details will be published on the Wellbeing of Women website. If the women’s health ambassador is championing improvements in this area, that is the start of the conversation. It will start Jess’s legacy, in terms of raising awareness for other women.

Mental health support is often not accessible. This is not the only case of women not being listened to when it comes to women’s health. Ahead of the women’s health strategy, we issued a call for evidence, to which we received more than 100,000 responses. Whether it was on endometriosis, the menopause or fertility issues, the overwhelming response was that women are often not listened to when they ask for help, either because healthcare professionals were not aware of the conditions that women were raising, or because the attitude of healthcare professionals, whether to pregnancy, the menopause or puberty, was, “This is part of a woman’s cycle, and you just have to get on with it.” We want to end that stigma.

There are so many interventions that can help women throughout their life course, regardless of their condition or the life change that they are going through. Through the women’s health strategy, we want to change that attitude, so that when women ask for help, they have a positive experience and feel supported.

We are looking at perinatal mental health. Tragically, the most common cause of death in new mums is suicide; that is absolutely extraordinary. It is tragic to hear that Jess died by suicide because she felt so isolated and helpless in dealing with her condition. We will hopefully publish the suicide prevention strategy very soon, and new mums—indeed, mums in general—will be a priority group in it. We recognise that there is not support for mums during and after pregnancy. We want to address the fact that suicide is the leading cause of death.

We are doing that already. Mental health services around England are expanding to include new mental health hubs for new, expectant or bereaved mums. We are opening up 33 of them, which will provide psychological therapy, maternity services and reproductive healthcare for women with mental health needs following trauma or loss, or directly related to their experience of pregnancy or birth. Those will be available in England from March 2024. I know that is no consolation to Jess’s family, but we are absolutely addressing that as quickly as we can.

We also recognise the importance of supporting women’s health in the workplace. My hon. Friend is quite right that there are laws in place to protect women when it comes to maternity leave and discrimination around pregnancy. I am happy to work with the Under-Secretary of State for Work and Pensions, my hon. Friend the Member for Mid Sussex (Mims Davies), on raising awareness of this condition, because employers are not aware that it is very different from early-stage morning sickness or pregnancy sickness, and that female employees will need help, support and understanding. They should not be afraid that the situation will eat into their maternity leave or, as my hon. Friend the Member for Hyndburn said, statutory sick pay. I am happy to have discussions with my hon. Friend the Under-Secretary of State for Work and Pensions. We have been working closely on the menopause in the workplace, so I am happy to take that up.

Hyperemesis gravidarum is not included in the women’s health strategy, which looks at the priority areas of women’s health, although pregnancy is. I would like to address that, because I have heard clearly from my hon. Friend, through what she said about Jess’s tragic experience and the outcome for her family, how difficult this issue is. I take on board that many healthcare professionals, particularly those whom a woman will see before she sees a midwife, will not have had training or support in understanding the extent of this condition. As my hon. Friend said, even midwives do not get specific training on HG.

I suggest that, following the webinar in September that the women’s health ambassador is leading, we organise a roundtable with her to discuss the findings, and see how we can take some of this forward. Through the National Institute for Health and Care Research, we have money for research, which could be on managing the condition; psychologically supporting women who are struggling with its devastating and debilitating effects; or the use of drugs such as Ondansetron. We need an evidence base, so that we can support primary care teams and midwives in giving medication safely to pregnant women. There could be research on hydration and nutrition support for those not able to keep down food and fluids; on the training and education of medical staff and midwives; on removing the stigma and taboo; or on raising awareness among healthcare professionals, the public and pregnant women. They may not realise that HG is a condition for which they should be able to get help and support, and that it is not just them being unable to cope with morning sickness. Some women do feel that, when they actually have a condition that makes their experience different from what many women go through.

The offer is on the table; I can meet my hon. Friend to see if we can draw some findings from Jess’s terrible experience, so that we can eliminate the chance of that happening to other women. In the minutes that I have left, I extend my thanks to my hon. Friend, and say to Jess’s family that I am so sorry to hear of their experience. I am happy to support Jess’s legacy, so that we change the experience for pregnant women who suffer with hyperemesis gravidarum, and never again hear such a tragic story.

Question put and agreed to.

16:28

Sitting suspended.