Underfunded and under-researched: women’s health is left behind in the UK

19 Mins read

Women suffer disproportionately to men when it comes to health issues, yet there is much less funding and research put into women’s health in the UK.

Cigarette packaging is now something you want to avert your eyes from, avoiding staring in the face of blackened toes and yellow teeth.

Books about sobriety and podcasts on meditation are as popular with your mother as they are with your matcha drinking classmates. With life expectancy shooting up around the globe, you could say we have come a long way in terms of health and understanding it.

Yet there is another side to health in the UK which is a bleaker picture. Our healthcare system, the wonderful NHS; one we forget to gloat about being free because it leaves both patients and staff stuck in the mud the majority of the time.

Around 51% of the population face obstacles trying to receive the care they need yet it is women who are the greater sufferers. The UK’s male population has a higher mortality rate, yet it is women who spend a significantly greater proportion of their lives in ill health and disability.

The introduction of the Women’s Health Strategy for England in 2022 signalled that there was some recognition of the fact that there has been a longstanding gap in healthcare when it comes to one gender.

The strategy involves a six point plan which aims to boost health outcomes for all women in the next ten years by improving the way the health and care system engages with women’s health.

Taboos and stigmas surrounding women’s health are part of the disparities between genders within healthcare, and an issue that spreads into the workplace and education settings.

Normalising conversations about periods, menopause, or IBS, to name a few, will ensure that women are better supported and can therefore stay productive within the workplace.

The nation’s largest funder of health and care research, the National Institute for Health and Care Research (NIHR), spends £1 billion from the Department of Health and Social Care budget on research every year.

It’s first Diversity Data Report has outlined benchmarks for promoting equality, diversity and inclusion, and has already set the wheels in motion in some areas by introducing new policies and interventions. Moving forward it aims to promote further opportunities for women in research.

The NIHR has commissioned 20 new policy research units, including one dedicated to reproductive health, to complement the existing unit for pregnancy and maternal health.

“As a woman you are expected to sail through it and not think about the risks you are putting yourself under.”

A RAND Europe review (2014) of research needs and expenditure in pregnancy in the UK found that the NHS pays 50 times more in pregnancy related legal claims than it spends on pregnancy related research.

Despite one in three women reporting a reproductive or gynaecological health problem, just 2% of medical funding is spent on pregnancy, childbirth, and female reproductive health.

Both Lindsey and her daughters were susceptible to blood clotting which they didn’t find out until they had deep vein thrombosis (DVT). This was after being put on the pill which can itself higher the risk of blood clots.

“They don’t tell you about those things, they just put you on the pill. You don’t get any checks to see if you are susceptible.” Lindsey said.

Clotting conditions aren’t investigated until you actually have a clot, which can sometimes be too little, too late.

Lindsay’s eldest daughter Claudia went for blood tests when her sister’s D-dimer came back at a high level, an indicator of having risk of blood clotting and deep vein thrombosis. Claudia’s test flagged up antiphospholipid syndrome, an immunity disorder which causes a high risk of blood clotting and can put a woman at greater risk of a miscarriage.

To get diagnosed you have to have a second blood test, twelve weeks later, however as Claudia didn’t have a clot, she was refused the second blood test.

“The likelihood is that I will get pregnant and potentially have the risk of having a clot and nothing will be followed up until then. This would then affect my pregnancy of course. They don’t investigate clotting issues until you have a clot which is fine for men because there’s no risk to their sperm. The whole idea how it influences your health and fertility is very different for women.” said Claudia.

“Women’s fertility and reproductive health is an economical consideration. If women are choosing not to have children, you are stuck with a population shortage. If there are contraception issues, say due to a bad batch of contraceptive pills, that takes out a lot of people.

“Globally it isn’t a problem though and that is why we don’t see the research and funding we want. If birth rates were dropping drastically across the globe, then we would see a change, we would see an investment and research, but right now it is disregarded as we have population growth.” she said.

“It was very much ‘well babies cry that’s normal put up with it.’ Almost suggesting I was a hormonal, overprotective woman.”

“As a woman you are expected to sail through it and not think about the risks you are putting yourself under. It was all a bit blasé really from our experiences.” said Lindsey, mother of three. Juggling childcare with a career in the corporate world, commuting to and from London every day, Lindsey was dismissed many times by doctors over the years.

“Women’s fertility and reproductive health is an economical consideration. If women are choosing not to have children, you are stuck with a population shortage. If there are contraception issues, say due to a bad batch of contraceptive pills, that takes out a lot of people. Globally it isn’t a problem though and that is why we don’t see the research and funding we want,” she said.

“If birth rates were dropping drastically across the globe, then we would see a change, we would see an investment and research, but right now it is disregarded as we have population growth.”

“As a woman you are expected to sail through it and not think about the risks you are putting yourself under. It was all a bit blasé really from our experiences.” said Lindsey, a mother of three. Juggling childcare with a career in the corporate world, commuting to and from London every day, Lindsey was dismissed many times by doctors over the years.

“I wouldn’t say I had post-natal depression it was more that it was lack of sleep, dealing with a toddler and then a baby that never slept, on top of trying to work. It was all vert dismissive when I went to the doctors. It was very much ‘well babies cry that’s normal put up with it.’ Almost suggesting I was a hormonal, overprotective woman.”

“Even you saying that is institutionalised internally, the way you say, ‘I wouldn’t say I had post-natal depression it was probably lack of sleep.’ Well actually, you might have had post-natal depression but because the doctors were so dismissive, and you are a crack on and get on with it type of person so that could have been a degree of it.” her daughter Claudia interjected.

“The doctors were telling you ‘Oh it’s probably nothing’ and so you told yourself ‘Oh it’s probably nothing’. That is a massively institutionalised thing. It’s learned behaviour from how you are spoken to and how you get treated over the years as a woman.”

More than one in ten women are affected by post-natal depression within a year of giving birth. Many studies have shown that the pandemic has increased the number of mother’s suffering from post-natal depression.

Most women remain silent sufferers, or perhaps don’t even realise that they are suffering from post-natal depression in the first place. As women, we are wired to put on a brave face, particularly in this era of Instagramming your family weekend like its an at home Hello magazine shoot. No woman wants to be the one to break down at coffee morning and say she isn’t coping well.

One in ten women are affected by postpartum depression within a year of giving birth [Unsplash: Aditya Romansa]

“All the stuff that happens to your body, and your hormones. I remember saying that to a midwife and she almost shut me up, but they were the things I needed to know. No one tells you how crap you feel day to day. They certainly don’t tell you that your hair can fall out and your teeth can fall out, they don’t tell you that you can get diabetes. I mean if they did tell you that then maybe a lot less people would be having children.” she laughed.

“In school they teach you about getting pregnant and having a baby, but they don’t tell you all the stuff that goes on afterwards. Even when you are out of school and having a baby, I remember going to an NCT class and as lovely as they are, they don’t tell you about what you need to know. They give you the mechanics, but they don’t really educate you on what happens.”

In a country where our mental health services are as overrun as the rest of the NHS, women are struggling to get the help they need. Depression affects one in six people in the UK, with women twice as likely to suffer from it. Postpartum and hormonal changes such as the menopause, are major triggers for depression.

There may be 13 million menopausal women in the UK, yet the menopause is still shrouded in silence which creates more of a negative impact on women suffering. Over 63% of working women claim that the menopause has negatively affected their careers, with many leaving jobs due to lack of support alongside the difficulty of divulging their struggle to family and friends, let alone their male boss.

“Do I want to feel like shit everyday or do I take the risk of getting cancer?”

“My last job I was in, I worked for a woman. She was a little bit older than me, and she used to talk to me about things like the menopause, but she would never have talked about that in front of the rest of the team. There were no women in senior positions, so for her to show what she was going through would have been a sign of weakness to her. She paid hundreds of pounds every month for patches and creams, even got Botox done because she wanted to hold her place in the corporate world.” said Lindsey.

The lack of research combined with the limitations of methodology has left those suffering with the menopause in the dark when it comes to symptoms and the side effects of medication given out.

“I guess it’s (the menopause) getting a little bit better as people are speaking about it more, but do they spend any money on that? Probably not. You go to the doctor and say I’m suffering from perimenopause, or the menopause and they just give you an anti-depressant, because studies have shown it helps with menopausal symptoms. It didn’t help me that’s for sure. It’s all very generic due to lack of research and information.” said Lindsey.

“They won’t invest any money in it because it doesn’t actually cause a problem. Most women going through the menopause are at the end of their career, they have given all they can. They aren’t seen as a priority as they aren’t part of the workforce, or the reproductive cycle anymore.”

“A woman gets a period every single month until she’s early fifties and it affects them every single month. It will affect their work output, their risk of losing a job or being put forward for higher roles, there is an emotional impact, and there is no funding for that, no research, no progression there at all. For something that happens to someone every single month.

“Would it be different if it was a male? In people’s minds I guess there is an element of thinking with women that they will go off and have a baby and fall out of the workplace environment, fall out of that system. That’s also why they don’t spend the money on the research.” said Lindsey.

The UK’s Women’s Health Strategy introduced the UK Menopause Taskforce, making us believe menopause is a top priority within women’s health moving forward. In the last year, the costs of hormone replacement therapy (HRT) were reduced to £19.30 for a year’s supply via the low cost pre-payment scheme (PPC). The number of HRT treatments purchased has risen by 47% since 2021/2022.

“They have developed things a bit more, I guess. They have improved, now you can have patches and less aggressive HRT because before it gave you a high risk of cancer, meaning you had to weigh up ‘do I want to feel like shit everyday or do I take the risk of getting cancer?’ those are the options you are still faced with, just at a different level.” said Lindsey.

“For me personally, going on HRT gives me a much higher risk of DVT but I will take the risk. I am putting my life at risk as I have already had a blood clot. You can say that it is ridiculous but what are my options? They wouldn’t give a man a choice like that. They wouldn’t say ‘take this drug it might have these side effects which could kill you but just take it to help your symptoms now’. If you weren’t a woman, there wouldn’t be this attitude.” she said.

“It is a personal choice, and I am aware of the risks. I just can’t function and would rather have this to help me right now.”

he number of HRT treatments purchased has risen by 47% since 2021/2022 [Unsplash: Christina Victoria Craft]

Marie Stanley is a lead clinical nurse specialist for breast cancer, who has worked in the sector for twenty five years.

“In terms of women’s health as a whole of course there has been improvement with things like breast screening, but that’s because it has come through the cancer pathway, the research into cancer, not the research into women’s health.” she said.

Breast cancer is a well-funded part of the health care system, and predominately women. Each year 550,000 women are diagnosed with breast cancer in the UK, in comparison to just 400 men. There may be a huge amount of research and funding, yet the majority of this stems from charity. For every £1 spent by the NHS caring for cancer, it spends 12p on research: for every £1 spent by the NHS caring for reproductive issues, just 1p is spent on research.

The Women’s Health Strategy sets out to ensure that there is greater representation of women at all levels of the health and care system, as well as in clinical trials. The strategy aims to address the lack of research into women’s health and improve the representation of women of all demographics in research. It should ensure that existing data is broken down by sex.

“When you look at research in general, so little research is done with women involved, especially things to do with fertility and childbirth. They eliminate women out of research because there are too many variables such as hormonal changes and your period. They would need to repeat the study over the course of your period cycle. If you look at medical research, even say cardiovascular, it is so limited in terms of the depth it goes into for women.” she said.

Cardiovascular nurse, Hayley McCrone, 24 years old, deals with patients awaiting heart transplants.

“I see transplant patients and the medication they are given influences their period and fertility. They just carry on with this medication because they don’t know how much it influences all of those things. Other medication affects your kidneys, that can then affect your pregnancy, there is just a lack of information on all of this.” she said.

“Even the symptoms for a heart attack are completely different for women. It can show up as stomach or breast pain, or even flu like symptoms. It can present completely and utterly differently to men and a lot of people are unaware of that.

At work we talk about not overloading the heart with fluid, yet that can be different for a woman at different stages of her life. The concept of holding fluid when you are on your period versus off your period, when you hit the menopause, then once you are going through the menopause, it varies for every woman.” said Hayley.

The lack of information surrounding women’s health stems from childhood and education. As part of the Women’s Health Strategy, there is the aim to enable women as well as wider society to equip themselves with accurate information about women’s health. It sets out the emphasis to provide healthcare professionals to have both initial and ongoing training needed to treat patients knowledgeably and empathetically.

“I notice with patients that there is a difference in how the genders present, such as women typically present a lot later and a lot sicker. I don’t know if that is part to do with how women are raised, we are told to crack on and not worry about things, so we let it go, let it go. You’re dismissed so many times you just get on with it and live with it and then by the time you realise it is more than perhaps giving it credit for, you are much sicker.

I have even had a lot of discussions with male patients where their wives have died and they always say, ‘I think she knew something was wrong, but she just carried on’ or ‘I told her to go to the doctor’, but we as women are bad at that.”

“There is a whole generation of women who are suffering in silence.”

As a nurse, Hayley may have a better insight into the health and care system, yet she has faced similar issues with her own health being a woman.

“As a young woman I have found for myself and my friends, that a big experience is when we women go to healthcare professionals who are male, about female problems. There isn’t that understanding or knowledge.” she said.

“I went to the doctors about a problem with my cervix and the doctor said, ‘oh well it is probably just cancer or chlamydia.’ I did a test and was negative for chlamydia so instantly I thought I have cancer. I went back to the doctors; this time a female doctor and she actually did an inspection and it turned out it was something completely different.

However, it needed a minor procedure but couldn’t be dealt with as it didn’t fit the requirements for the procedure, so I had no choice but to deal with the effects until it got worse. I ended up going private to have it sorted and spending crazy money. It’s just a textbook example of being told to wait until it gets worse to get it sorted, which is insane. It was something that could have developed into something much worse. It majorly affected my life; it had a big impact.”  

In the NHS, most senior roles are filled by men, with most consultants being male. Medical research and clinical trials are conducted by men, and the dominating participants are men. The world of health and care is a man’s one.

“I would say the majority of selected individuals for clinical trials are male. Even if you find trials which are quite equally fifty-fifty male and female, you can’t just say those fifty women are all the same. Of course, that then brings the debate of how do you encapsulate a full population of women? You can’t, but if you attempt to it would make a difference.” said Hayley.

Sarah Tyler has been practicing as a women’s health physio for the past eleven years. “I got into women’s health because it was so needed, especially eleven years ago, no one really talked about it.”

When Sarah started her career at Queens in Romford there were little to no roles specific to women’s health. ‘I had to take a job in muscular skeletal physio and then I joined the bladder and bowel team at Herts and Essex hospital. After that I ended up going down the private route just because there were no jobs in women’s health.”

From pregnant women, to those post-natal, to women struggling with IBS, endometriosis and menopause, Sarah helps to educate women on their pelvic floor health. A third of women don’t seek help for pelvic floor dysfunction which Sarah says can lead to even worse health issues further down the line.

“Why do we go to the dentist every year and are told to go floss, yet we don’t go check our pelvic health?”

After a giving birth, one in three women will “leak” and one in two women suffer from pelvic organ prolapse. A prolapse can also be associated with the menopause due to lack of oestrogen thinning the vagina, as well women suffering from bowel conditions. Having a prolapse majorly affects the quality of life, whether you struggle pushing your baby along in the pram to suffering discomfort during sex.

Sarah explains that although women are greater sufferers from ill health, they are less inclined to tell family and friends, let alone go and see a professional. Menopausal women take approximately seven years from when they start to show symptoms to begin the journey of seeking help.

“There is a whole generation of women who are suffering in silence. It is better to have these conversations early, which is where my job comes in, to help push these conversations.” she said.

After making it through those awkward teenage years, and before faced with pregnancy or menopause, many young females are facing a growing challenge into their twenties. I noticed as my friends entered a new chapter of womanhood, many begin to suffer with “stomach issues”.

After feeling anxious every time they picked from a restaurant menu, they tried cutting out different foods. Hangovers became a different type of discomfort for them, so they tried cutting out alcohol. Some even went for allergen tests. Yet still the same discomfort and pain in the arse issue. It became apparent they were all sufferers of irritable bowel syndrome, commonly known as IBS. 

Bloated and constipated or suffering from bouts of diarrhoea, IBS leaves women feeling anxious in social settings.

Isabella Darke, 23 years old, was first diagnosed with IBS in 2018 after an endoscopy and colonoscopy. “I remember doing GCSEs and having a bad stomach all the time and not understanding what it was. I started going to the doctors and they said you’re just anxious.” Isabella said.

“The IBS as I know of it now is linked to having hyper mobility, where your joints and muscles are weaker. My muscles ache really easily and really quickly, which means my stomach muscles are weaker which causes the IBS.”

Like most sufferers of IBS, Isabella finds herself trapped in a vicious cycle. “Part of it is my anxious belly which worsens my IBS symptoms. The worse my IBS symptoms are, the worse my anxiety is. I guess it affects my life as I have to plan more. When I was at uni and when it got really bad, I was awake so many nights. I felt exhausted and trying to do uni work on top of that was a lot. Having to plan so much and feeling frustrated you don’t have a normal stomach; people can eat what they like and feel absolutely fine whereas you feel like you have barely eaten, and you don’t go to sleep all night cos you’re on the toilet. That is something I really struggled with.”

IBS affects one in twenty people in the United Kingdom. Women are the main sufferers; twice as many women are affected by IBS as men [Unsplash: Jonathan Borba]

“I struggled with understanding it; at the beginning I had horrible stomach pains and kept going to the toilet, it was all a bit weird. There were all these horror stories around about IBS, everyone you speak to would say that’s not normal that’s weird and that gets in your head. Someone who had Crohn’s told me I definitely have Crohn’s, go see someone else, it must be colitis this is not normal. It really gets in your head.”

Isabella’s experience with the NHS led her down the private route as she struggled to find help and advice: “For the first couple of years, I was dismissed a lot. They just kept saying yeah IBS, sort of get on with it but if I had been seen back then things might be different. I wasn’t as bad then as I am now so it’s definitely got much worse and I think if they had dealt with the problem properly then, then it might not have got as bad as it did. The thing with stomach problems Is that things can get worse. My dairy intolerance and IBS were so bad, but no one was listening to me and then it escalated a lot more.

“I sort of had to lie in the end. I was getting up more times to go to the toilet, sometimes I would go for a poo six times a day which of course isn’t normal yet when I said that to the doctors, they just brushed it off like oh that can happen. When I told them I would get up in the night and go to the toilet, and I exaggerated how many times a week it was, they eventually put me through for a scan. Even still they just said oh you have hiatus hernia; we will refer you to a dietician.”

IBS affects one in twenty people in the United Kingdom. Women are the main sufferers; twice as many women are affected by IBS as men. Although IBS is very common these days, the cause is still unknown. Understanding the condition better would lead to more rapid diagnosis for women.

“It’s affected my mental health a lot, particularly during my time at university. I feel there should be more advice around it. It feels like if you have stomach problems its bowel cancer or its just IBS, and they can’t look into it more. I now know from going private that I have hypermobility and IBS is more a mixture of things such as intolerances, sensitive stomach, and anxiety. I feel there needs to be more advice and also testing earlier, rather than just sending people away.

“I would say to any other woman having a similar experience to push for tests, even though it can make you feel more anxious. It does open things up and its much better to know what’s going on so you can deal with it. Don’t be embarrassed about your suffering, you should be completely open. If you don’t feel well don’t go through with plans or force yourself to do things. Be open with your friends and family.”

This common cycle in women’s health of being too nervous to approach healthcare professionals, then being dismissed after finally speaking up is a major problem besides lack of funding and research into women’s health.

This is where the internet has been a saving grace for many women. Social media platforms such as TikTok and Instagram have opened up discourse surrounding many health issues women face and have created a safe space for women to share their own experiences, to find people to relate to as well as educate further audiences.

“Social media is the only way people learn about things. TikTok and Instagram gives such an awareness of women’s health, and it has created a space for women to figure stuff out and talk to each other. The only way things are changing in terms of awareness is due to these platforms, not because scientific research or a change in the women’s health in medical terms.” said Millie, a 25 year old student, who has recently been diagnosed with ADHD.

“There is a lot of new research into women with autism and masking, as women are diagnosed so much later in life. I know lots of girls who have reached their twenties and been diagnosed with autism, like me, but that’s affected us growing up because there wasn’t enough information about how symptoms present in women, compared to men.” she said.

“Areas such as eating disorders, are dismissed as much as menopause, and I guess it is something that typically affects more women than men statistically. What they provide as a support network is limited and that’s where social media helps.

“A lot of health disparity comes from what class you’re in and what race you are, especially in women. Culture is also a massive influence on health education. Most of your health education comes from your childhood. If you’re not taught how your body works as a woman then you don’t know,” said Millie.

“It’s down to women talking to each other and being like ‘right we should do something about this’.”

Featured image by Luke Jones on Unsplash

Related posts

AI is set to revolutionise cancer treatment, but at what cost?

6 Mins read
In 2023, new forms of AI out-performed human radiologists but medical professionals warn the use of new technologies could pose…

The best tonic is chronic; self-medicating with cannabis

9 Mins read
There are almost two million people illicitly self-medicating for chronic pain in the UK – a 65-year-old pensioner, who’s suffered from migraines for 40 years, is one of them.

'Claps don’t pay the bills'— NHS staff strike for fair pay

2 Mins read
On the three-year anniversary of Covid-19 front-line workers protested poor pay and growing workloads in the NHS.

Leave a Reply

Your email address will not be published. Required fields are marked *