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“I have no faith in the system anymore” – answers sought after damning report into women’s health failings

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The recent Women and Equalities Committee (WEC) report further highlighted how the UK public healthcare system is failing to meet the needs of women—now they want to see solutions.

For many women, the WEC report published late last year revealed little they didn’t already know.

Women are constantly having their symptoms dismissed by healthcare providers, due to stigma, lack of education and ‘medical misogyny’, the committee found, often leaving them undiagnosed and in unnecessary pain for years. 

The report is the latest to highlight how a historical gap in understanding and prioritisation of women’s-health related symptoms, is leaving them without access to appropriate care and treatment.

In November, the Royal College of Obstetricians and Gynaecologists (RCOG) revealed that waiting lists for gynaecology have doubled since 2020, with three quarters of a million now waiting for treatment across the UK.

Almost three years on from the launch of the Women’s Health Strategy, which was set up to address the inequities in women’s healthcare in the NHS, there is a sense that while more awareness is welcome, not enough action is being taken.

“People are now at a point of real frustration,” Gabz Pearson, co-founder of the Menstrual Health Project, a charity which was set up to educate women and girls about their menstrual and reproductive health, tells Femtech World. 

“This isn’t new information, it’s something that people in the community have been advocating and campaigning for, for a long time. We’re now almost three years into the Women’s Health Strategy and I don’t see any real improvement.”

Gabz Pearson, co-founder, The Menstrual Health Project

Provide streamlined and seamless services 

Pearson says reading the report was like reading her own story. From her symptoms starting at the age of 10, it took almost a decade for her to finally be diagnosed with endometriosis and adenomyosis. 

To date she has had five surgeries, the last two of which she paid for privately, and the widespread pain she experiences has left her with mobility issues. At 32, she is planning to undergo a private hysterectomy next year.

“I’m still struggling in the healthcare system,” she says. “I have no faith in the NHS anymore…If anything, it’s just getting worse.”

Pearson is currently under the care of four different hospital trusts, the furthest of which is a two hour drive away. Some of the biggest frustrations for patients, she says, stem from the disparate pathways and lack of communication between services, particularly those operating under different care boards. 

“It creates so much disparity and confusion for people,” she says. “We need to have continuity across the UK when it comes to pathways and treatment.”

While the women’s health hub model has the potential to be a ‘positive step towards providing the joined-up care and commissioning’, the WEC report raises concerns that it exists within a healthcare system which has ‘significant commissioning, funding, workforce and expertise problems, particularly in the area of reproductive health’. 

Improve access to digital information

In 2023, Pearson attended A&E and was forced to wait six hours to see a general doctor, who told her “everything seemed fine”. Despite her diagnosis and insistence that she needed to be referred to a gynaecology specialist, staff weren’t able to access her medical records and refused to triage her to gynaecology. Two months later, a laparoscopy revealed that her bowel and ovary had fused to her pelvis, with adhesions detected from her hip to her ribs.

“Many women don’t want to go to A&E, they would rather suffer at home,” she says. 

“There should be a more seamless system. It should be easier for patients and healthcare professionals to access your information digitally. In Wales patients don’t even have access to the NHS app.”

As well as improving training and education among health professionals, the WEC is calling for the NHS to improve its ‘digital and social media presence’ in relation to reproductive health conditions. It must ensure the NHS website and app are ‘comprehensive, accessible, inclusive, and highly-visible’ to ensure it is a ‘first-port-of-call to prevent misinformation’.

This was already addressed in the Women’s Health Strategy for England, which states that the NHS will transform its website into a “world-class, first port of call for women’s health information” by updating content, adding new content and including third-party content to create a “trusted and comprehensive guide to women’s health”.

Yet many women, the WEC highlights, continue to turn to online spaces and a ‘proliferation of femtech apps’ to self-diagnose and fill the gaps in their knowledge currently left by public health providers. 

Explore collaborations and partnerships

Charities, such as the Menstrual Health Project, have also stepped in to provide the information and resources not currently delivered through the NHS. But these organisations continually face barriers such as access to public funding and a hesitance within the NHS to pursue partnerships and collaborations. 

A big reason why we charities and organisations exist is because the government and the NHS aren’t doing enough in a proactive way, especially when it comes to women’s health,” says Pearson.

“We created our menstrual health toolkits because it was really hard to find all the information in one space. The NHS should be working with organisations, co-production is the way forward. There are so many amazing startups and companies that are really trying to innovate and push the boundaries. It feels like the NHS doesn’t want to approve these resources, but they also aren’t willing to do anything themselves.” 

Last month, Dr Sue Mann, NHS England’s first national clinical director for women’s health, told the WEC that the public sector must “keep pace” with innovation and “understand the [femtech] space better” to help people navigate it in a way which is helpful for their health.

The committee has also recommended the inclusion of an ‘interactive tool’ on the NHS website which can help women determine whether they might have a reproductive health condition. 

Respondents to the Women’s Health Strategy for England’s call for evidence suggested a need for further research into digital technologies that help women understand their bodies better and to consider how the femtech sector could collaborate with the NHS. Meanwhile earlier this year, the Small Business Research Initiative (SBRI) Healthcare issued a funding call for proposals from femtech companies.

However there remains concerns in the public health system that the femtech sector ‘may present a risk to women, especially in areas of data protection’.

Build a strong evidence base for innovative solutions

Dr Michael Watts, co-founder of Blum Health is an NHS clinician who now supports public and private sector organisations to bring innovative technologies to the NHS and international healthcare. Blum Health is now the software manufacturer for several NHS trusts across the UK, supporting them to build new technologies within the public sector ecosystem. 

He says for companies looking to target this market, it is crucial to build a strong evidence base. 

“Companies often overlook this,” he tells Femtech World. “They just look at the big, shiny end-solution, but they haven’t got a foundational evidence base to structure a fundamental solution roadmap.

“There’s two problems you have to tackle as a tech company; the clinical problem that you’re trying to solve and the patient experience (regardless of whether they are a direct user or indirect beneficiary). You have to demonstrate that it’s as safe as the current state-of-the-art, that it provides the same level of clinical care without compromising safety, and an equally, if not, better experience for the patient. 

“If you can reduce resources, without compromising safety, and with a better patient experience, you’re much more likely to succeed as an innovation.”

He continues: “Someone’s only going to use something if it’s less painful than the pain of staying the same. For example, an eLeaflet mobile app has to be easier than having to trawl public health websites to learn about (for example) endometriosis. It has to be a better user experience, it has to be faster (by delivering information in a more digestible way) and more easily accessible (for example, delivered in the patients first language), and it has to deliver clinical grade information in a meaningful way, based on that patient’s age and demographic.”

Invest in people, as well as tech

Watts believes tech can play an important role in helping improve the support and information available to patients, and that the NHS could better utilise tools for telemedicine consultations, digital screening, self-referrals and access to content. But he’s wary of relying too heavily on certain technologies, especially for those seeking an initial diagnosis. 

“It comes down to what information that solution has been built upon, and if that’s a non-representative data set, it could be subject to bias,” he adds. 

“Whatever the solution is, at least for now – it will likely require a human in the loop, because you can never remove women’s access to a human clinician.”

Pearson agrees that while she will always welcome a telephone appointment if it means she gets seen quicker, she wants to see more investment in people, as well as technology.

“We need more women’s health nurses within GPs and hospitals. There are so few endometriosis specialists, but there also needs to be women’s health nurses who know about conditions like adenomyosis, PCOS, and fibroids,” she adds. 

“There’s not enough resources or incentive for people to go down those specialist routes.”

Diagnosis

AI may help accelerate breast cancer diagnosis for high-risk women – study

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AI may help speed breast cancer diagnosis for high-risk women after abnormal mammograms, a study suggests.

Women with abnormal mammograms often wait weeks to learn whether they have breast cancer.

Researchers at UC San Francisco and UC Berkeley said an AI-guided workflow could help reduce that wait by quickly identifying those most likely to have the disease. Some women could move from imaging to evaluation, and sometimes biopsy, in a single day.

Dr Maggie Chung, first author of the study, said: “This is a really an exciting time.

“This moves us closer to personalised care, where we can tailor a plan so that each patient gets the right intervention at the right time.”

The study used an open-source AI model called Mirai.

The model was trained on hundreds of thousands of mammograms linked to patients’ cancer outcomes.

A mammogram is an X-ray scan of the breast used to look for signs of cancer. A biopsy involves taking a small tissue sample to test for disease.

The AI tool is designed to detect subtle patterns in screening mammograms and predict a woman’s cancer risk.

Researchers at UC San Francisco and UC Berkeley applied the model to more than 4,100 screening mammograms at Zuckerberg San Francisco General Hospital and Trauma Center.

Mirai identified 525 women, about 12.7 per cent of screened patients, as high risk.

Those patients could receive an interpretation of their mammograms immediately after the scan and have additional diagnostic imaging for suspicious areas on the same day.

Some women who needed biopsies were also able to have them on the same day.

The researchers said Mirai reduced the wait time for diagnostic evaluation from several weeks to about an hour.

For women who were ultimately diagnosed with breast cancer, it reduced the average wait for biopsy from more than two months to fewer than 10 days.

The researchers stressed that Mirai does not replace radiologists or make diagnoses on its own.

Instead, it acts as a triage tool to help physicians identify the patients who can benefit most from accelerated care.

The team analysed more than 114,000 archival mammograms before launching the programme, to ensure the model would capture enough high-risk patients without overloading the clinic with too many expedited evaluations.

The researchers said they hope AI will support a more personalised approach to breast cancer screening tailored to each patient’s breast cancer risk.

Chung said: “Right now, many women follow the same screening schedule but their individual risk can be very different.

“AI risk assessment gives us the chance to identify the women most likely to benefit from expedited care and get them what they need.”

Adam Yala, senior author of the study and a data scientist at UC Berkeley, said: “This is a powerful example of how AI can be a collaborative partner for physicians.

“It shows how we can improve care when we bring clinicians and data scientists together to design these systems.”

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Fertility

Infertility may be risk factor for early menopause, study suggests

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Women with primary infertility may face a higher risk of early menopause and reach it about a year earlier, a study suggests.

The findings suggest women with primary infertility may be more likely to enter menopause before the age of 45.

The increased risk appeared most notable among women with unexplained infertility or a history of endometriosis.

Dr Stephanie Faubion, medical director for The Menopause Society, said: “This study shows that women with primary infertility, specifically those with unexplained infertility or a history of endometriosis, were at risk for early menopause.

“Given that early menopause is linked to adverse long-term health consequences, these women may benefit from counselling that they are at risk of early menopause.

“This will allow them to monitor for early menopause and to seek treatment with hormone therapy, if indicated.”

Early menopause is usually defined as menopause before age 45, while premature menopause is menopause before age 40.

Women who experience menopause earlier may face symptoms for longer and have a higher risk of long-term health problems.

These can include cardiovascular disease, osteoporosis and neurocognitive disorders. Osteoporosis weakens bones, while neurocognitive disorders affect memory, thinking or brain function.

The study, highlighted by The Menopause Society, involved nearly 700 people, roughly half of whom had been diagnosed with primary infertility.

It found that women with a history of primary infertility underwent natural menopause about one year earlier than those without such a history.

Researchers found no association between infertility and premature menopause.

Infertility affects around one in six people globally and can have consequences beyond family planning.

Previous research has linked infertility with higher rates of cancer and cardiovascular disease, although causes vary and may involve genetic, hormonal, in-utero or lifestyle factors.

In-utero factors are influences that occur while a baby is developing in the womb.

Earlier studies looking at links between infertility and early or premature menopause have produced mixed results, with some not accounting for different types of infertility.

The new study suggested that women with unexplained infertility or a history of endometriosis may have an increased risk of early menopause.

Endometriosis is a condition where tissue similar to the lining of the womb grows elsewhere in the body. It can cause pain, heavy periods and fertility problems.

Known risk factors for early or premature menopause include tobacco use, low body mass index, not having given birth and starting periods at a younger age.

Women who have had more childbirths and those with a history of oral contraceptive use have previously been linked to later menopause.

The researchers said women with primary infertility may benefit from additional counselling because of the systemic and long-term health effects of early menopause.

They also said women should be encouraged to seek evaluation and treatment if they experience a new loss of menstrual cycles.

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Endometriosis documentary profiles stars including Marilyn Monroe and Amy Schumer

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A non-profit has launched an endometriosis documentary featuring Amy Schumer and Marilyn Monroe as it pushes for changes in how the condition is treated and understood.

The Endometriosis Collective has launched to change how endometriosis is researched, treated and understood, starting with a documentary featuring stories from people including Amy Schumer and Marilyn Monroe.

The feature-length documentary, “End of the Cycle”, will premiere in New York on Tuesday, and The Endometriosis Collective is making the film free to stream online.

Schumer, a comedian, writer and actor, has previously spoken of how endometriosis left her “on the floor in pain, vomiting from the pain, the pain that nobody can see.”

Schumer is one of several celebrities featured in the documentary. Other contributors include dancer Julianne Hough, Olympic medallist Brittany Brown and actors Janel Parrish and Folake Olowofoyeku.

The Endometriosis Collective timed the documentary premiere to coincide with the 100th anniversary of Marilyn Monroe’s birth.

Monroe, who died in 1962, starred in films such as “Some Like It Hot” and “Gentlemen Prefer Blondes.”

According to a biography published in 1985, Monroe’s endometriosis was so severe that it destroyed her marriages, her wish for children, her career and ultimately her life.

The Endometriosis Collective said the documentary shares newly uncovered information about Monroe’s experience with endometriosis.

The non-profit said the information connects Monroe’s story to the experiences of women across generations, highlighting how far awareness, research and care still have to go.

A representative of the Marilyn Monroe Estate said: “By sharing this part of her story through ‘End of the Cycle,’ we hope to honour her legacy in a way that brings visibility to endometriosis, encourages more open dialogue and helps inspire the research needed to create change.”

As part of the premiere, The Endometriosis Collective is holding a panel discussion.

Schumer, Brown and Olowofoyeku, the documentary’s co-directors Sammy Jaye and Soraya Simi, and medical experts are due to be part of the premiere.

AbbVie’s Orilissa and Sumitomo Pharma’s Myfembree are among the approved drugs for endometriosis pain.

Hough, one of the participants in the documentary, starred in an Orilissa campaign in 2017.

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