Hyperemesis Gravidarum Awareness

Caroline Nokes Excerpts

Wednesday 19th July 2023 Westminster Hall

[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.

Eating Disorders Awareness Week

Caroline Nokes Excerpts

Tuesday 28th February 2023 Westminster Hall

[Caroline Nokes (Romsey and Southampton North) (Con)]

It is a pleasure to serve under your chairmanship, Ms Harris. I congratulate the hon. Member for Bath (Wera Hobhouse) on having secured this important debate and thank the Backbench Business Committee for having agreed to it.

I will not repeat the statistics, because the hon. Member for Bath covered them brilliantly. She highlighted the scale of the problem and the fact that it is growing more among young men; of course, Eating Disorders Awareness Week 2023 particularly highlights the challenge for young men. I will focus on some constituency cases that I have come across recently, and on some areas where we can do better to raise awareness in order to start to tackle the root causes, thereby hopefully helping future generations of young people.

I say young people, and we all know that eating disorders are most likely to impact on 17-year-old girls, but the stark reality is that they can endure into much later life. I remember meeting groups of women in this place who were well into their 40s and still suffering from eating disorders. That is not to paint too negative a picture, because we know that people can recover from eating disorders. With the right support and, crucially, early intervention, eating disorders can be tackled successfully. However, we also know that more and more people are suffering from eating disorders in this country today and that covid exacerbated that. Being locked down in our own homes, confronted with image after image on social media, undoubtedly contributed to the problem.

[Margaret Ferrier]

Social media algorithms will serve to those with eating disorders more and more content that encourages harmful and dangerous behaviours. That is particularly worrying for younger and adolescent sufferers. Does the right hon. Member agree that platforms cannot be allowed to continue to profit from that via advertisements, and that the Online Safety Bill provides the perfect opportunity to address that?

[Caroline Nokes]

That was exactly what I was going to ask the Minister: can we please make sure that the online safety legislation is used as a tool to oblige social media platforms to clean up their acts when it comes to profiting from legal but undoubtedly extremely harmful forms of advertising to people who are already suffering from very serious medical conditions? When it comes to eating disorders—specifically anorexia nervosa, which is the most lethal mental health condition there is—we have to make sure that we do not trivialising or dismiss them, regarding them as something that happens only to young girls and they get over it. The stark reality is that eating disorders kill more people than any other psychiatric illness.

We have seen from the evidence provided to all Members by the Royal College of Psychiatrists the increase in incidence, but we also know that waiting times are up hugely. I return to my initial point: early intervention is crucial. When somebody with an eating disorder asks for help, that is the time to give it to them, not 12, 24 or even more weeks later. We know there is a huge challenge with transfers from children’s to adult services. Too often, sufferers will fall through the cracks and be forced to go back to the beginning of a waiting list.

I want to highlight the case of one of my constituents— I will not give her name—who is currently suffering from a severe eating disorder and has been for years. She had been in children’s services for years but recently turned 18, which brought with it the challenge of finding her appropriate support. She is currently in an adult mental health bed in a secure ward. The stark reality is that she and two other girls in the area covered by the Southern Health NHS Foundation Trust were competing for the one bed available at Leigh House, which is the Hampshire-based specialist support unit for eating disorders. There we have it: an 18-year-old in an adult secure mental health unit, and a real challenge among clinicians to decide whether they will try to treat the physical symptoms of the eating disorder or the mental health conditions, and whether a mental health condition should take precedence over the physical problems.

I then heard from the trust that my constituent was having to be transferred every single day to be force fed with a tube because staff in the mental health unit were not able and did not want to do that. I believe that at just 18 someone is still a child. We know that with eating disorder sufferers development is often slower and young people are more childlike. Yet they are effectively forced to live in an adult mental health ward while suffering from a severe eating disorder and needing specialist help. Furthermore, training is crucial and support for staff who treat people with eating disorders is equally so. It is incredibly gruelling and, in no uncertain terms, a hideous process to have to force feed someone. We cannot imagine the impact that has on staff.

On social media content and algorithms, what does the Minister believe we can do to better protect young people? What can we do to give them the tools they need to be more resilient and to understand, when they are being pushed social media content, what is good and what is not—what is harmful and what is less harmful? I am proud to have stood repeatedly in this Chamber and called for personal, social, health and economic education to be a mandatory part of the curriculum, and proud that a Conservative Government have achieved that, but we also need to ensure that teachers are better equipped to teach PSHE, and I repeat my call for it to be mandatory up to the age of 18. It is not good enough to say that young people have to stay in education—school or college—or training until they are 18 but not to equip them with crucial life skills between 16 and 18. I get that the good colleges will do that, but many will not, so I ask the Minister to work with her colleagues in the Department for Education to ensure that the highest possible quality PSHE is delivered by teachers who feel and, indeed, are equipped to deliver it.

I want to talk briefly about stigma. I am conscious that this Eating Disorders Awareness Week we are highlighting eating disorders in boys and men. Stigma is still a huge challenge and it is undoubtedly worse for men and boys. When we look at the statistics, we see that one in five does not ever even say to anybody else that they think they might be suffering from an eating disorder. How on earth can someone get help if they cannot even talk about it?

It is incredibly difficult for young men to find their way in the world. They are under massive pressures through body dysmorphia or through the images they see, which are wholly unrealistic and unachievable. There are fitness apps on which the proponents will be taking significant amounts of steroids to achieve a physique that is, to be frank, virtually impossible for the ordinary person—the ordinary man—to achieve, and we know that over-exercising is every bit as much a part of eating disorders as not consuming calories. I am particularly aware that we need to find mechanisms to support young men, through the education system, so that they recognise the challenges around over-exercising, the dangers of steroid abuse and, frankly, the wholly unrealistic male body image that is being promoted to them.

I visited April House in Southampton, a specialist over-18 eating disorder unit, years ago now. That is to my shame: I should go back and say hello again. What was striking was that in a room of women, there was one man, and his particular problem was running. Every single day, he was running a marathon, and he could not rest mentally unless he had run those 26 miles every single day. Let us all just imagine what that was doing to his body and how incredibly weak and damaged he was by it. If we do nothing else today, let us encourage more men to speak up, encourage people to be braver, and ensure that we speak with a united voice from this Chamber. This is not a party political issue; it is absolutely a cross-party issue that we have to do more to support eating disorder sufferers.

--- Later in debate ---

[Tim Farron (Westmorland and Lonsdale) (LD)]

It is a genuine pleasure to serve under your guidance this morning, Ms Harris. I congratulate my hon. Friend the Member for Bath (Wera Hobhouse) on securing this debate, which she has led very well. It has been a helpful debate, and I associate myself with the comments that everyone has made. I also add my thanks to Beat, Hope Virgo and all the others leading the campaign to increase awareness and improve provision for people suffering with eating disorders.

Eating disorders are, of course, a range of mental health conditions that have a physical consequence, with maybe two thirds of those suffering from them having a physical illness as a consequence of their mental health condition. It is a privilege, and deeply moving, to work alongside, support and serve sufferers and their families in my communities in Cumbria. I feel deeply affected by not just their struggle with their condition but, sometimes, their struggle to access the services they need.

As has been mentioned, covid has had an impact on the prevalence of eating disorders, with something like a 55% increase in referrals during that period, and an increase of more than 80% in the number of hospital admissions, and I want to remark on what we do in response to those admissions. In our communities in Westmorland, anybody needing tier 4 hospitalisation for an eating disorder will be placed in a bed in Manchester, Edinburgh or Darlington if they are lucky and there are sufficient beds in those places. In many cases, as the hon. Member for Sheffield, Hallam (Olivia Blake) mentioned, people—often young people—end up hospitalised on the wrong kind of wards, where they are supported by lovely, wonderful people who are just not trained to support them. Therefore, the experience not just of that person in their suffering, but of the people caring for them and the other people—often young people—on those wards, is harrowing, deeply distressing and inappropriate.

As has also been noted, it is worth mentioning that the use of BMI as a measure to decide whether someone can access services is dangerous and foolish. We would not say to a person with cancer, “Come back when you have more cancer”—we would treat them.

[Caroline Nokes]

This will be a very brief intervention. The hon. Gentleman is absolutely right about BMI—we really have to move away from it. It gives a misleading impression of wellbeing. Can we please remember that it is designed for a Caucasian male’s body type? We know that the majority of sufferers of eating disorders are women.

[Tim Farron]

I am grateful to the right hon. Lady for a helpful intervention. That is absolutely true. We would not say to a person who presented with cancer, “Come back when your tumours have spread.” If someone is presenting with an eating disorder, we need to believe them and allow them to access the right support immediately. That needs to be changed urgently.

At the other end of the spectrum, at tier 1, and particularly for young people, what are we doing to build resilience so that people do not develop eating disorders in the first place? In Cumbria, there is nearly nothing in terms of provision for adults, while we spend a grand total, through our public health, of 75p per child and young person on tier 1 resilience support, and that is for all mental health conditions, not just eating disorders. We need to prevent people from getting into these circumstances in the first place—for their sake and for everyone else’s.

Let us be positive: it is important to welcome the access waiting time standards. They are a good thing. However, they are mostly not being met. In north Cumbria, 26% of routine referrals of young people and 11% of urgent referrals of young people are not being treated in that timescale. In south Cumbria, 23% of routine referrals are not being seen within the four-week standard. While there is better news for those meeting the standards for urgent referrals, the total declared for Morecambe Bay hospitals trust is 12 individuals with an urgent eating disorder need. That is baloney. I personally know more people than that who are struggling, which tells us either that the data is faulty or that it is hard to get into the system because BMI is used as a gateway to access those services.

More generally, this speaks of a lack of parity when it comes to care, treatment and taking seriously issues relating to mental health, particularly where young people and eating disorders are concerned. If one of our young people were to break their leg on a football pitch on a Saturday afternoon, they would be straight into hospital and the healing process would begin that day. If something invisible in them breaks, it could be weeks or months before they get support, or it could never come. It may come dangerously, or even fatally, too late, and that is wrong.

What are our collective asks? We need increased awareness. It is right that we focus on men, who are less likely to come forward and yet make up a huge proportion of those in need, but help should be there for everyone, and I urge people to come forward and access it. We also need more support for families, who are massively hit by the consequences of eating disorders for their loved ones.

We mentioned the waiting time standards for young people and children—I am glad we have them, although I wish we met them—but there are no standards for adults, and it is about time that there were. Research funding needs to be increased so that we can understand the causes and cures and tackle this range of diseases head on. We need to be utterly intolerant of dangerous images and things that lead people into this dangerous area and cause such ill health.

Medical training needs to be improved so that we can refer our referred accurately. We need to tackle the BMI gateway. When tackling obesity, for example, we need to remember that there is a danger of things such as like calorie references being well-intentioned but counter- productive. We need to ensure that money allocated to integrated care boards for eating disorder support is actually spent on that. Finally, services must be commissioned adequately and close to home.