Treatments are available, but clinicians and women need sufficient information to make shared decisions about care. High quality evidence comparing the benefits and risks of different treatments, alongside women’s preferences, values and beliefs, can help women receive the care that is right for them.

At the NIHR Evidence webinar (November 2024), researchers presented their findings on the long-term effects of treatments for heavy periods, endometriosis and fibroids. Attendees included clinicians, members of the public, and NHS decision makers, highlighting broad interest in women’s health, and the need for information.

The webinar asked: 

• how do treatments for heavy periods compare after 10 years?
• which hormonal treatment best prevents pain 3 years after endometriosis surgery?
• which fibroid procedure has better outcomes after 4 years?

This Collection summarises the 3 research projects presented at the webinar and includes video clips from the speakers.

• Pervasive stigma associated with gynaecological and urogynaecological health, a lack of education and “medical misogyny” has contributed to poor awareness of these conditions.
• Diagnosis is slow not only because reproductive health conditions often have non-specific symptoms, but because of a lack of expertise and resource.
• Women continue to undergo harrowing experiences of painful procedures such as hysteroscopy and having a contraceptive coil fitted. This includes not being informed of the potential pain, feeling they cannot stop procedures and not having access to sufficient pain relief. This is against medical best practice and guidelines.
• Women’s health hubs are being established across integrated care boards as part of the previous Government’s Women’s Health Strategy for England. The model has the potential to be a positive step towards providing the joined-up care and commissioning needed to support women with reproductive health conditions but it requires funding to do so effectively.
• Research into women’s reproductive health conditions lags behind other, similarly prevalent conditions. It is not adequately prioritised by funders or commissioners and is not incentivised enough in clinical academia.
• Although there are patches of progress since the Women’s Health Strategy for England published in 2022, it has been too slow. The strategy lacks an implementation plan and resource, yet studies show that increases in funding for gynaecology services for early diagnosis and treatment provide a significant return on investment, reduces the burden on primary and secondary care settings and helps reduce sick leave and unemployment.

The report makes a wide range of recommendations relating to the following areas:

• Public understanding of reproductive health conditions.
• Accessing diagnosis.
• Accessing treatment and support.
• Training and standards.
• Research into women’s reproductive health conditions.

In relation to the Women’s Health Strategy for England, it recommends that:

• This should be updated to include priorities for specific, common conditions. The Government commits to reducing waiting times for an endometriosis diagnosis to less than two years by the end of this Parliament and to improved understanding, diagnosis and treatment of heavy menstrual bleeding over the same period.
• The Government should allocate increased, ringfenced funding to support research into the causes, diagnosis and treatment of women’s reproductive health conditions. While increased funding will in itself attract more researchers to this area, NHS England and research bodies should also consider what steps they can take to increase interest among clinical academia.
• The Government should publish an implementation plan for the Women’s Health Strategy for England detailing timelines, costs and resource.

Related reading

• Failures of informed consent and the impact on women’s health: a Patient Safety Learning blog
• Hysteroscopy: 6 calls for action to prevent avoidable harm
• Medicines, research and female hormones: a dangerous knowledge gap
• One hour with a women's health expert and finally I felt seen
• The normalisation of women’s pain
• Sex bias in pain management decisions
• Misogyny is a safety issue: a blog by Saira Sundar
• Dangerous exclusions: The risk to patient safety of sex and gender bias
• Unconscious bias: gynaecological pain, the elephant in the womb!
• Pain bias: The health inequality rarely discussed

Westminster Hall debates give Members of Parliament (MPs) an opportunity to raise local or national issues and receive a response from a government minister. Any MP can take part in a Westminster Hall debate.

Independent Medicines and Medical Devices Safety (IMMDS) Review

The IMMDS Review examined the response of the healthcare system in England to the harmful side effects of three medical interventions: hormone pregnancy tests, sodium valproate and pelvic mesh implants.

Its final report, First Do No Harm, published in July 2020, found that these interventions have resulted in a truly shocking degree of avoidable harm to patients over a period of decades. The Review describing the healthcare system’s response to this as “disjointed, siloed, unresponsive and defensive”. The Review made nine over-arching safety recommendations following on from its findings.

House of Commons debate

In the discussion MPs highlighted individual cases from their constituents relating to pelvic mesh, and also raised broader issues including:

• Concerns relating to specialist mesh centres, intended to offer comprehensive treatment, care and advice, including removal surgery, to patients harmed by pelvic mesh implants.
• Points around the above point included the small number of these facilities (9 in England), questions about the suitability of some professionals working in these (who in some case may be surgeons who inserted mesh implants), concerns about length waits when patients ask for second opinion, and lack readily available mental health support and counselling.
• Lack of progress in acting on recommendations set out in the Hughes Report, published by the Patient Safety Commissioner, considering options for redress.
• Questions about the suitability of the Yellow Card scheme, run by the Medicines and Healthcare products Regulatory Agency to monitor the safety of healthcare products, and whether reporting to this should be mandatory.

In his comments in response at the end of the debate, Government Minister Andrew Gywnne MP (Parliamentary Under-Secretary of State for Public Health and Prevention), stated that:

• The 10-year health plan that the Government are consulting on will ensure a better health service for everyone, regardless of their condition or service area. A core part of the development of the 10-year plan, including its approach to women’s health, will be an extensive engagement exercise with the public, NHS staff and stakeholders.
• The IMMDS review made nine recommendations, and the then Government accepted seven. Of those seven, four have been delivered, including the appointment of Dr Henrietta Hughes as the first Patient Safety Commissioner in England, the establishment of nine specialist mesh centres across England and the establishment of a patient reference group. The Government are committed to delivering on the remaining three recommendations.
• The Government are still considering the recommendations of the Hughes Report and are committed to providing an update at the earliest opportunity.

You can watch the full debate here.

Related reading

• Redress, research and regulatory reform are still needed: An overview of patient safety issues related to surgical mesh (Patient Safety Learning, 1 May 2023)
• Reflections on The Hughes Report: Pelvic mesh, sodium valproate, hormone pregnancy tests and options for redress (Patient Safety Learning, 20 February 2024)

• Continue to promote or expand schemes so that women can access free products to manage symptoms such as heavy menstrual bleeding and incontinence.
• Urgently prioritise improving communication with women waiting for gynaecology care and treatment, including giving women clarity on how long they should expect to wait. This work must include national, system and local leads from across the UK to ensure this is addressed at every level of operational delivery.
• Expand the accessible information and advice that is available at a national level which can be accessed on relevant NHS websites in England, Wales, Scotland and Northern Ireland. This should be co-produced with service users.
• Direct relevant system and local leads to urgently produce easy-to-read accessible bespoke summaries of what local networks and resources are available to women waiting on gynaecology lists so they can access additional support in their local communities, close to home.

To support professionals, the report recommends that governments across the UK:

• Provide health services with the resources they need so they can protect gynaecology services against operational pressures, ensuring greater theatre and diagnostic capacity for gynaecology.
• Build, enable, and incentivise protected training time in gynaecology as part of any elective recovery plan, to future-proof care provision.
• Develop accessible professional guidance about supporting women on waiting lists, ensuring it is easily accessible nationally.
• Consider targeted funding at a national level to expedite the longest waits, to ensure equity.
• Work with leads at all levels of the system to develop or consolidate strategic support networks and partnerships, particularly those between primary and secondary care, to improve delivery of care.
• Thank all professionals at every part of the pathway working in women’s health, acknowledging the specific challenges in the wider system that are unique to women’s health.

The UK Government must also act now to deliver for the future to ensure high-quality gynaecology care for every woman in the UK:

• Commit to expanding Women’s Health Hubs in an equitable and sustainable way so that they can be established, to ensure all women, wherever they live, can access care and support to manage their health across their whole life course.
• Set out how it plans to deliver, with sustainable funding attached, the future demand and supply requirements outlined in the Long Term Workforce Plan.

This should include plans to recruit professionals and deliver retention measures to encourage professionals to stay in the NHS.

• Increase the levels of funding allocated to health across UK, including increased funding in devolved nations.
• Implement measures to improve education and awareness of gynaecology in wider society and create better access to education and training for professionals in gynaecology care.
• Consider how to build on existing digital initiatives, commit to expanding data collection in gynaecology and commit to ringfenced funding to enable research, patient participation, innovation and pilots to improve understanding and experiences of gynaecology.

Further reading on the hub:

• One hour with a women's health expert and finally I felt seen
• The normalisation of women’s pain
• Sex bias in pain management decisions
• Misogyny is a safety issue: a blog by Saira Sundar

I have just got off a call with a GP and women's health expert, and after more than 20 years worth of symptoms and events I finally feel seen and heard. 

I am 41 years old and have never received any private healthcare treatment before today. During my life, I have been seen by some of the most compassionate, skilled and effective NHS healthcare professionals. My closest friends and family work for the NHS and are brilliantly determined and patient-focused. I have however also been seen by some of the most dismissive and ineffective healthcare professionals, many of these during appointments relating to gynaecological or female-focused issues. 

As I relayed my full history via video call to the GP today, I became quite emotional. The experiences I recounted of the healthcare' provided to me during teenage years, early postpartum hours, an IUD insertion, perimenopausal symptoms, concerning and debilitating gynaecological symptoms, and a year-long-wait for a gynaecological referral, all carried a level of trauma. Talking about them made me realise how I had been repeatedly let down, dismissed or inappropriately treated. 

Key points: looking back at my history

• I had not been offered local anaesthetic for an IUD procedure where I should have been, and I went on to feel extremely high levels of pain (which had not been recorded in my notes).
•  Going by my description, it was likely after giving birth that I had experienced a postpartum haemorrhage, which had not been recorded or treated appropriately. 
• A internal scan that had been deemed unnecessary and cancelled, should have been done to investigate key causal factors for some of my gynaecological symptoms. 

I had made the private appointment because I knew this woman was a well known expert in the full spectrum of women's health issues. I wanted guidance that came from a place of knowledge and passion. I wanted the next steps I took to be the right ones for my health. I wanted to understand what my array of symptoms meant and the role my medical history had to play. I wanted to make sure I, and my regular GP weren't missing something important. I wanted to feel better. 

Can most people afford to access this service? No. Can I afford to do it again? No. Was it worth every penny? Absolutely for me personally, but the NHS will benefit too.  

Key points: looking at next steps

• She gave me advice for which investigations and blood tests were needed to be able to determine the causal factors of my gynaecological symptoms.
• She confirmed many of my symptoms related to perimenopause and provided an explanation as to how this was affecting my body. 
• I was given a breakdown of options for HRT and advice on which to try first - explaining carefully which element of the treatment addressed which of my symptoms. 

I came away with so much support, guidance and knowledge that I can honestly say this appointment, which had taken at least 6 times as long as an NHS slot, would undoubtedly save the system money in the long run (considering the multiple appointments I'd had over the years). And more importantly, I am confident it has set me on the path to receive the right investigations, symptom management and treatment options. These two points obviously go hand-in-hand when striving for an efficient health care system that gives value for money and leads to improved outcomes. 

Was it because she is a private doctor and provides a better service? Of course not. She simply had the right expertise, attitude and, crucially, time to properly navigate my health needs. She works for the NHS too.

While she spent much longer with me than an NHS GP would have been able to, I do feel this sort of approach could actually save the NHS time and money if they were to offer longer consultations for women's health issues. I came away understanding my health better, armed with knowledge that would help guide the next steps of my health journey in a way that would be more efficient for the healthcare professionals I would be communicating to. 

In just 40 minutes...

In just 40 minutes (it took far less time than we had allotted) she had done 6 key things:

1. listened to my summary of 30 years worth of events and relevant history (I had put this in writing for her to read at the start, which I felt would aid us to use the time efficiently)
2. asked many questions to gain further detail...and listened
3. found time to medically explain my symptoms and likely causes, in plain English
4. offered next steps advice
5. communicated with compassion and respect
6. made notes that would form the basis of a letter for my GP. 

I am an assertive and confident person, but reflecting on my appointment and the events I retold, I realised there was a common and surprising theme running through. Whenever something hadn't felt right with my body, I had felt uncomfortable speaking up. Or I had very quickly accepted a poorly executed follow-up or a dismissal of my concerns entirely. This resulted in long-lasting symptoms and traumatic healthcare experiences being accepted. Two things that I had learnt to endure, to the detriment of my health. 

We have got to help girls and women of all ages feel confident and enabled to speak up about their health. From an early age they need to hear us all (men and women) using the right language, with no shame. Only then can we set girls up to confidently advocate for themselves and their own health. 

But confidently speaking up isn't enough if no one listens. We need to really listen to girls and women. Not just for the obvious reasons of humane and compassionate treatment, but also because it is more efficient for the system. And let's be honest, medical history somewhat shafted us, so the data that lies within women's experiences should be welcomed and encouraged if we are to have any chance of catching up.  

Only by genuinely hearing, respecting and responding to their voices and their experiences relating to their bodies, can women be enabled to influence the diagnostic and care planning process.

A process that surely we should be central to?

Related reading

• The normalisation of women’s pain
• Sex bias in pain management decisions
• Misogyny is a safety issue: a blog by Saira Sundar
• Medicines, research and female hormones: a dangerous knowledge gap
• Dangerous exclusions: The risk to patient safety of sex and gender bias
• Unconscious bias: gynaecological pain, the elephant in the womb!
• Pain bias: The health inequality rarely discussed

Women's views on self-testing kits 

• The research showed that when asked about the benefits of a self-testing kit, over half of respondents, 53%, chose "privacy", followed by "avoiding discomfort", 52%, and "easier to find time", 47%. 
• The findings also show that women's concerns about the accuracy of home testing would have to be addressed if it was rolled out.  

What else would encourage women to take up cervical screening? 

Women were also asked to choose out of 11 factors that would encourage them to take up cervical screening in the future. The most important for them were:

• Sensitivity from healthcare staff about worries women might have about the examination and previous experiences, 62%;  
•  A healthcare professional carrying out the screening being the same gender, 61%;  
• Ease of travelling to the screening appointment location, 53%; and  
• A wider choice of appointment times, for instance, in the morning or over weekends, 52%.  

• Girls born in the North East, North West and Yorkshire and the Humber in 2018-2020 can only expect to live in good health to 59.7, 62.4 and 62.1 years, respectively. This is up to four years less than the national average and up to six years less than girls born in the South East.
• Lower levels of HRT prescribing in the North suggest some women may not be receiving adequate treatment for menopause symptoms, a concern as these affect employment, wellbeing and health.
• Cuts to public health budgets have disproportionately affected the Midlands and North of England, with the North enduring per-person cuts 15% higher than the average for England, and the worst affected area in the country being the North East, with a cut of £23.24 per person.
•  Outside London, the three northern regions had the highest rates of new diagnoses of STIs and Gonorrhoea among people accessing sexual health services in 2022. The exception is Chlamydia in under 25s.
• The proportion of women with a diagnosis of mental illness who were receiving a treatment for their mental illness was lower in the North West and North East than in the South and Yorkshire and the Humber, likely indicating a treatment gap between regions
• For severe mental illness, such as bipolar disorder and schizophrenia the North West and North East have higher prevalence rates compared to the South and Yorkshire and Humber; eating disorders are the only low prevalence mental illness occurring in a higher proportion of women in the South.

Since the publication of Left for too Long report in 2022, the RCOG has consistently been calling for more action from Government and the NHS to improve the long waits for hospital gynaecology services. Waits in gynaecology are some of the highest in absolute terms of all the elective specialties, and have consistently outstripped other specialties in percentage growth since before the pandemic.

The majority of those currently on a waiting list for hospital gynaecology services are waiting for outpatient care, with many still waiting for an initial outpatient appointment. It is therefore important that this work listens to and incorporates the voices and experiences of general practice clinicians who are almost always the first port of call for patients with gynaecological symptoms, and who tend to make decisions around referring into specialist care.

RCOG and the Royal College of General Practitioners want to hear from all general practice clinicians involved in the care and support of patients with gynaecological and urogynaecological symptoms and conditions that could be referred into elective (planned) care. This work is not about cancer care on the two-week wait pathway, or urgent referrals. They would like to hear from all clinicians working in general practice, and not only those with an interest or expertise in women’s health.

If you want to hear more about the project, you can contact the project team on GynaecologyProject@rcog.org.uk.

The closing date for this survey is Wednesday 11 September 2024.

Elneil might have angered many professional colleagues with her outspokenness, but she has found vindication in the findings of a national inquiry that led to sweeping changes in women’s care. She speaks to The BMJ as she took up her post as the first professor of urogynaecology at University College London (UCL).