RCOG and BGCS policy position: Gynaecological cancers

In the UK, over 22,000 women and people are diagnosed with one of the five gynaecological cancers (womb (uterine), ovarian, cervical, vulval and vaginal) each year.² Symptoms vary between cancers but can include postmenopausal bleeding, bloating, pelvic pain, bleeding between periods, pain or bleeding during sex, itching and unusual vaginal discharge.³ Anyone with female reproductive organs can be at risk of gynaecological cancers, and so trans, non-binary and intersex people with a womb, cervix, ovaries, fallopian tubes, vagina and/or vulva should be aware of symptoms and be able to easily access services.⁴

Prevention and early intervention are at the centre of a life-course approach to women’s health. Better symptom awareness, equitable access to efficient screening, diagnosis and treatment pathways, and action to positively influence social determinants of health, provide significant opportunity to reduce incidence, or even eliminate, some gynaecological cancers.

Providing women and people with a risk of developing gynaecological cancers with high quality screening, diagnosis and treatment for gynaecological cancers requires an adequately staffed, motivated, well-trained and well-supported workforce, and so underpinning all recommendations is the need to address existing pressures within the cancer workforce.

Current numbers of gynaecological cancer specialists and multidisciplinary team members are already well below what is needed to deliver an optimal service, and without action, the gap between workforce capacity and population need will continue to widen.⁵ Services need to be supported to keep pace with demographic changes which are expected to lead to increased demands on gynaecological oncology services within the next 15 years,⁶ and the increasing complexity of some surgeries.⁷

Governments across all four nations of the UK must put in place fully funded, long-term plans for the NHS workforce to address widespread staffing pressures and ensure a future cancer workforce that matches population need.

In the gynaecological oncology subspecialty, there are concerns with both the number and geographical distribution of consultant and trainee posts compared to demographic requirements, and the number of trained doctors available to fill these posts.⁸ For example, there has been a 32% decrease in the number of trainees completing subspecialist training (SST) in gynaecological oncology over the last five years.⁹

The RCOG and British Gynaecological Cancer Society have set out recommendations to support workforce planning in gynaecological oncology services in the UK, including an expansion of SST posts to keep up with projected workforce needs, sub-specialist consultant appointments and training posts more evenly distributed based on population needs, and investment in sub-specialty training centres in regions where there is currently no access to training.¹⁰

Specialist cancer nurses provide clinical and emotional support and personalised information for people with cancer.¹¹ They reduce treatment costs, increase efficiency, drive innovation and provide valuable information for service re-design, and play an important role in multidisciplinary care.¹² We support Macmillan Cancer Support’s recommendation for governments across the UK to invest in specialist cancer nurses and close significant gaps in the workforce.¹³

We would welcome an increase in the number of pathway navigators and administrators, who play a vital role within services, liaising with patients and ensuring clinics remain fully booked and efficient. These pathway navigators and administrators must receive full training for their roles and work over a realistic number of services.

Bed availability, theatre space and staffing are also vital to providing optimum care for those with gynaecological cancers. It is important that services are supported to adapt to clinical developments and the increasing complexity of gynaecological cancer surgery, which may require more theatre time, staff and post-operative management.

We know that that many people want to participate in research trials, and that centres with greater research recruitment can deliver better outcomes for patients.¹⁴ However, a recent Target Ovarian Cancer survey of UK women who had been diagnosed during or after 2016 found that only 23% had been asked if they would like to join a clinical trial, despite 60% reporting that they would like to.¹⁵

Making research participation one of the peer review measures and Quality Performance Indicators for every cancer service provider, as outlined by the British Gynaecological Cancer Society,¹⁶ would improve translation of research into practice and help widen opportunities for those with gynaecological cancers to participate in clinical trials.

In addition, NHS Trusts, Health Boards and wider health systems must ensure clinicians receive the time and flexibility to undertake research alongside their clinical work, ensuring that this is outlined and funded as part of their job plans.

We welcome the commitment of the Women’s Health Strategy for England to encourage research into cancers,¹⁷ and await publication of further plans in relation to encouraging research into areas such as effective interventions for women from deprived areas or with protected characteristics, improving diagnostic tests and treatments, and how treatment will affect overall quality of life.

Further research on rarer gynaecological cancers such as vulval and vaginal cancers is needed, and we welcome the National Cancer Research Unit identification of vulval cancer as a priority area.¹⁸ We would also welcome further research on prevention options for people at risk of hereditary ovarian cancer.

Accurate data sets on all gynaecological cancers must be available in each UK nation to enable meaningful analysis of service performance, inform service improvements, and ultimately help improve outcomes. Data must be disaggregated by cancer, given the differences in diagnosis and treatment between gynaecological cancers. We also support the collection of patient reported outcome measures across all cancers to aid and inform cancer services and policies.

It is vital that data can be analysed by ethnicity, age, geography, sexual orientation, gender, trans status and socioeconomic background in order to identify and respond to inequalities in outcomes and experience. Sexual orientation and trans status should be collected in line with the NHSE commissioned guidance published by LGBT Foundation,¹⁹ as per government commitments in 2018.²⁰

The potential for national audits on other gynaecological cancers, in addition to ovarian cancer, to provide clear and meaningful data to help improve care and outcomes should be considered by the UK governments. For example, there is a strong case for this with womb cancer as inequalities in incidence and diagnosis are evident.

In 2020, the World Health Organization (WHO) adopted a global strategy to accelerate the elimination of cervical cancer, setting targets for 2030 on vaccination, screening and treatment.²¹ We welcome NHS England’s ambition to eliminate cervical cancer by 2040,²² and urge the governments in Wales, Scotland and Northern Ireland to follow suit.

Cervical screening

Cervical screening currently prevents 70% of cervical cancer deaths in England, but if everyone eligible attended screening regularly, 83% of deaths caused by cervical cancer could be prevented.²³ Cervical screening uptake continues to fall and in 2022-2023 was at its lowest for 20 years, with only 69% of those eligible adequately screened.²⁴ This is well below NHS England’s acceptable performance level of 80% or greater.²⁵ Similar trends are seen in Scotland, Wales and Northern Ireland, with each nation also identifying significant variations in uptake by region.²⁶

Alongside significant regional variations in uptake, some groups are much less likely to attend their cervical screening appointment, including women from ethnic minority backgrounds, disabled women, survivors of sexual violence, those living in more deprived areas, and those from the LGBTQIA+ community including trans and non-binary people with a cervix.²⁷ Women with unofficial immigration status face additional barriers to cervical screening.²⁸

Cervical screening must be easily accessible for everyone who needs it, with barriers to access and acceptability understood and addressed. Across the UK, commissioners of cervical screening services should ensure that women and people with a cervix can easily access screening wherever they access care, including in primary care and sexual and reproductive health services. This includes working with providers to ensure flexible screening times.

In England, women’s health hubs could play a vital role in integrating cervical screening with other aspects of women’s health care, as noted in the Women’s Health Strategy.²⁹ The UK Government must ensure these hubs receive appropriate funding and support to deliver cervical screening. Similarly, trans-specific health clinics that provide cervical screening should be included in national health strategy and commissioning.

Alongside commissioning accessible and holistic screening services, UK governments must focus on understanding and addressing the barriers to screening amongst currently underserved groups. Reasons for non-attendance are variable and complex,³⁰ and services should consider the most effective and acceptable ways of increasing engagement with screening, informed by meaningful engagement with individuals from these groups. Services should also be aware that those who are members of more than one underserved group may be disproportionately disadvantaged, and we encourage greater research and more systematic data collection to address this.

Following the conclusion of the HPValidate study in December 2023, we look forward to a decision on the implementation of HPV self-sampling, which has the potential to increase the number of people undertaking cervical screening, especially from underserved groups.

There is still a need to address and modernise the IT systems that support screening. In England, the long-awaited NHS Cervical Screening Management System must be implemented as a priority.³¹ This will also support the option for a GP or sexual health provider to manually opt in trans and non-binary people with a cervix to receive automatic screening invitations,³² as currently they do not and must request appointments. Data collected on screening uptake should also be better disaggregated to further illuminate where the service is failing to reach those who are eligible for screening.

Awareness of HPV, HPV vaccination and cervical screening

The HPV immunisation programme has hugely reduced the incidence of cervical cancer in younger women following its introduction in 2008, with a large study estimating that it had prevented approximately 450 cancers and 17,200 pre-cancers in England up to mid-2019.³³

However, disruption to the immunisation programme caused by the COVID-19 pandemic led to a decline in HPV vaccination uptake, with 2021/22 coverage in each UK nation improving but yet to return to pre-pandemic levels.³⁴

Public health bodies across the UK must aim to return to pre-pandemic levels of uptake and tackle the disparities in uptake by region and deprivation. Jo’s Cervical Cancer Trust recommends that strategies should include education and awareness about the HPV vaccine in schools and amongst healthcare professionals, more catch-up opportunities, and co-producing communication and outreach for underserved groups.³⁵ Improvements to processes and IT systems recording vaccination status would also help services identify those who have not had the vaccination.³⁶

Everyone should have appropriate information and awareness across the life course about HPV, and the importance of vaccination and screening. We support the recommendations in the Jo’s Cervical Cancer Trust HPV Stories report, including the inclusion of education about HPV in schools from vaccination age.³⁷ Resources such as The Eve Appeal’s Know Your Body education programme provide resources for teachers to educate young people about what is normal for them, and when to seek help. ³⁸

There must be ongoing investment by the governments of the UK in awareness campaigns about the importance of HPV vaccination for eligible groups, cervical screening participation, and the signs and symptoms of other gynaecological cancers. For example, raising awareness of cancer symptoms is an ambition of the Women’s Health Strategy for England, and the UK Government must commit to continuing awareness-raising campaigns following the evaluation of the Help Us Help You – Cervical Screening Saves Lives campaign.³⁹ These campaigns should make efforts to be representative of underserved groups not only in imagery, but also in approach, access and cultural considerations.

Currently just 33% of women and people with ovaries in England, 43% in Wales, and 46% in Scotland and Northern Ireland, are diagnosed with ovarian cancer at an early stage (stage I or II), when the cancer is easier to treat and chance of survival is higher.⁴⁰

In England, waiting times for ovarian cancer treatment are the second longest of all cancers, taking an average of 69 days from GP referral to starting treatment. ⁴¹ Improvements in primary care and secondary care diagnostic pathways for ovarian cancer are needed to ensure women access care quickly. Insights and best practice identified by the Ovarian Cancer Audit Feasibility Pilot and British Gynaecological Cancer Society must be implemented across all Cancer Alliances to improve diagnostic pathways within secondary care.⁴²

Efforts by Integrated Care Boards or Cancer Alliances to improve pathways must aim to identify and address the causes of disparities in ovarian cancer diagnosis and treatment. Existing disparities include:

• Ethnic disparities in referral to treatment times, with Black and Asian women waiting five to six days longer on average than white women.⁴³
• Disparities in diagnosis by area of deprivation, with women living in the most deprived quintile 50% more likely to die within two months of diagnosis than those in the least deprived.⁴⁴
• Geographical variation in early diagnosis, which in 2015-2017 ranged from 22% to 63% amongst CCGs in England,⁴⁵ and a varying probability of accessing surgery and chemotherapy between regions, even after accounting for differences in patient and tumour characteristics.⁴⁶
• Disparities by age, with women over 70 more likely than younger women to be diagnosed via emergency presentation and less likely to receive treatment. ⁴⁷

NHS England and the Welsh Government have now funded a three-year ovarian cancer audit in England and Wales⁴⁸ – a very welcome move. Responding to insights from the ovarian cancer audit, along with further research and collection of better disaggregated data, is vital to ensure that everyone with ovarian cancer has access to efficient and effective diagnosis and treatment.

There is currently no screening programme for ovarian cancer, and so awareness of key symptoms among women and people with ovaries is important for securing an early diagnosis. However, Target Ovarian Cancer has found that awareness is low, with only one in five UK women knowing to look out for bloating, one in 100 knowing that needing to urinate more often is a symptom, and two in five wrongly believing that cervical screening detects ovarian cancer.⁴⁹

The governments of the UK must commit to continued and sustained investment in awareness campaigns featuring the signs and symptoms of ovarian cancer. We also support Target Ovarian Cancer’s recommendation that information at cervical screening appointments must make it clear that it does not test or screen for other gynaecological cancers, and include the symptoms to look out for.⁵⁰

Womb (uterine) cancer is the most common gynaecological cancer, with around 9,700 new cases diagnosed each year in the UK.⁵¹ Most womb cancers start in the womb lining and are called endometrial cancer.⁵²

Incidence rates have increased by nearly 60% since the early 1990s, due to several factors including reduced hysterectomy rates and increasing prevalence of obesity, and are now expected to remain at this higher rate until at least 2040.⁵³

There is insufficient knowledge surrounding endometrial cancer and awareness of the symptoms remains low. As there is no current screening programme, awareness of symptoms and signs of endometrial cancer, such as post-menopausal bleeding (PMB), is vital to ensure prompt diagnosis. This is why ongoing investment by the governments of the UK in awareness campaigns about the signs and symptoms of gynaecological cancers is so important to support prompt diagnosis and treatment.

PMB and abnormal bleeding are common side effects of hormone replacement therapy (HRT), and the recent rise in HRT use will inevitably lead to increased referrals for investigations to rule out endometrial cancer within secondary care. Additionally, abnormal pre-menopausal vaginal bleeding is a common reason for consultation in primary care, and women under 45 years of age are less likely to be referred on an urgent suspected endometrial cancer pathway and therefore more likely to experience diagnostic delays compared to post-menopausal patients.⁵⁴ More research is needed into acceptable non-invasive tests with the potential to be delivered in primary care and availability of direct access investigations to differentiate who requires further diagnostic assessment in secondary care.

NICE recommends testing for Lynch syndrome, an inherited condition that carries an increased risk of some cancers, be offered to those diagnosed with endometrial cancer.⁵⁵ Those who have Lynch syndrome can be offered increased surveillance for other cancer types, and relatives may also be offered testing. We welcome NHS England’s commitment to roll out a national programme of testing for everyone diagnosed with bowel or endometrial cancer⁵⁶ – it is imperative that women have equitable access to testing for Lynch syndrome throughout the UK and that units are supported to offer this service.

Some risk factors for gynaecological cancers could be reduced with greater attention to addressing health inequities and social determinants of health. For example, it is estimated that around a third of endometrial cancer diagnoses are caused by overweight and obesity,⁵⁷ with rates of obesity and overweight strongly associated with socioeconomic deprivation and wider health inequalities within the UK.⁵⁸ With endometrial cancer incidence rates in England 17% higher in the most deprived quintile compared with the least, action to support people to maintain good health is relevant for addressing inequalities in cancer incidence.

Cross-government strategies to reduce health inequities and improve the social, economic and environmental determinants of health, alongside population-level actions such as those recommended by the Obesity Health Alliance, should be adopted to support women and people with a risk of developing gynaecological cancers to maintain a good general health, and a healthy weight.⁵⁹

1. RCOG, Progress in Cervical Screening in the UK (Scientific Impact Paper No. 7) (2016) ↩
2. Cancer Research UK, Cancer statistics for the UK (2016-2018); The Eve Appeal, Gynae Cancers: A Brief Explainer ↩︎
3. The Eve Appeal, Gynae Cancers: A Brief Explainer ↩︎
4. The Eve Appeal, Info for the Transgender, Non-binary and Intersex Communities ↩︎
5. Macmillan Cancer Support, Cancer nursing on the line: why we need urgent investment across the UK (2021); RCOG, O&G Workforce Report 2022 (2022) ↩︎
6. RCOG, O&G Workforce Report 2022 (2022); Cancer Research UK, Common cancers mortality projection ↩︎
7. BGCS, BGCS Workforce Survey 2022 (2022) ↩︎
8. RCOG, O&G Workforce Report 2022 (2022); BGCS, BGCS Workforce Survey 2022 (2022) ↩︎
9. RCOG, O&G Workforce Report 2022 (2022) ↩︎
10. RCOG, O&G Workforce Report 2022 (2022); BGCS, BGCS Workforce Survey 2022 (2022) ↩︎
11. Macmillan Cancer Support, Addressing the gap (2020) ↩︎
12. Macmillan Cancer Support, Addressing the gap (2020) ↩︎
13. Macmillan Cancer Support, Cancer nursing on the line: why we need urgent investment across the UK (2021); Macmillan Cancer Support, What Are We Waiting For? Act now on long cancer waiting lists (2023) ↩︎
14. BGCS, Response to findings from National Ovarian Cancer Audit Feasibility Pilot (2021); Target Ovarian Cancer, Pathfinder 2022: Faster, further, and fairer (2022) ↩︎
15. Target Ovarian Cancer, Pathfinder 2022: Faster, further, and fairer (2022) ↩︎
16. British Gynaecological Cancer Society, BGCS Call to Action – Response to findings from National Ovarian Cancer Audit Feasibility Pilot (2021) ↩︎
17. GOV.UK, Women's Health Strategy for England (2022) ↩︎
18. NCRI, Gynaecological Group strategic priorities ↩︎
19. LGBT Foundation, Monitoring sexual orientation and trans status ↩︎
20. GOV.UK, LGBT Action Plan: Improving the lives of Lesbian, Gay, Bisexual and Transgender people (2018) ↩︎
21. WHO, Global strategy to accelerate the elimination of cervical cancer as a public health problem (2020) ↩︎
22. NHS England, NHS sets ambition to eliminate cervical cancer by 2040 (2023) ↩︎
23. GOV.UK, Cervical screening: helping you decide (2022) ↩︎
24. NHS Digital, Cervical Screening Programme, England - 2022-2023 (2023) ↩︎
25. NHS Digital, Cervical Screening Programme, England - 2022-2023 (2023) ↩︎
26. Public Health Scotland, Scottish cervical screening programme statistics (2023); Public Health Agency, Programme Performance and Standards; Public Health Wales, COVID-19 Recovery Profile – cervical screening (2022) ↩︎
27. Richards, M et al. Report of The Independent Review of Adult Screening Programme in England (2019); Jo’s Cervical Cancer Trust, We can end cervical cancer: The opportunities and challenges to eliminating cervical cancer in the UK (2023); Berner A et al, Attitudes of transgender men and non-binary people to cervical screening: a cross-sectional mixed-methods study in the UK (2021); Light B et al, Lesbian, Gay and Bisexual Women in the North West : A Multi-Method Study of Cervical Screening Attitudes, Experiences and Uptake (2011); B Serrano et al, Worldwide use of HPV self-sampling for cervical cancer screening (2022) ↩︎
28. NHSEI, Service specification no.25: NHS Cervical Screening Programme (2019) ↩︎
29. GOV.UK, Women's Health Strategy for England (2022) ↩︎
30. RCOG, Progress in Cervical Screening in the UK (Scientific Impact Paper No. 7) (2016) ↩︎
31. NHS Digital, New NHS Cervical Screening Management System ↩︎
32. GOV.UK, Women's Health Strategy for England (2022) ↩︎
33. Falcaro M et al, The effects of the national HPV vaccination programme in England, UK, on cervical cancer and grade 3 cervical intraepithelial neoplasia incidence: a register-based observational study (2021); GOV.UK, Concern over drop in HPV vaccine coverage among secondary school pupils (2023) ↩︎
34. GOV.UK, Human papillomavirus (HPV) vaccine coverage estimates in England: 2021 to 2022 (2022); Public Health Scotland, HPV immunisation statistics Scotland school year 2021/22 (2022) Public Health Wales, Vaccine Uptake in Children in Wales – COVER Annual Report 2022 (2022); HSC Public Health Agency, Annual Immunisation Report for Northern Ireland 2020-21 ↩︎
35. Jo’s Cervical Cancer Trust, We can end cervical cancer: The opportunities and challenges to eliminating cervical cancer in the UK (2023) ↩︎
36. Jo’s Cervical Cancer Trust, We can end cervical cancer: The opportunities and challenges to eliminating cervical cancer in the UK (2023) ↩︎
37. Jo’s Cervical Cancer Trust, HPV Stories (2021) ↩︎
38. The Eve Appeal, Know Your Body Education Programme ↩︎
39. GOV.UK, New national cervical screening campaign launches – as nearly 1 in 3 don’t take up screening offer (2022) ↩︎
40. Target Ovarian Cancer, Key facts and figures ↩︎
41. Target Ovarian Cancer, Data briefing 2022: Achieving excellence in ovarian cancer care (2022) ↩︎
42. BGCS, Call to action – Response to findings from National Ovarian Cancer Audit Feasibility Pilot (2021) ↩︎
43. Target Ovarian Cancer, Data briefing 2022: Achieving excellence in ovarian cancer care (2022) ↩︎
44. Ovarian Cancer Audit Feasibility Pilot, Short-term mortality in ovarian, fallopian tube and primary peritoneal carcinomas across England (2022) ↩︎
45. Ovarian Cancer Audit Feasibility Pilot, Disease Profile in England: Incidence, mortality, stage and survival for ovary, fallopian tube and primary peritoneal carcinomas (2020) ↩︎
46. Ovarian Cancer Audit Feasibility Pilot, Geographic variation in ovarian, fallopian tube and primary peritoneal cancer treatment in England (2020) ↩︎
47. Target Ovarian Cancer, Data briefing 2022: Achieving excellence in ovarian cancer care (2022) ↩︎
48. HQIP, National Cancer Audit Collaborating Centre ↩︎
49. Target Ovarian Cancer, Do enough of us know the symptoms? We investigate (2022) ↩︎
50. Target Ovarian Cancer, Pathfinder 2022: Faster, further, and fairer (2022) ↩︎
51. Cancer Research UK, Uterine cancer statistics ↩︎
52. Cancer Research UK, What is womb cancer? ↩︎
53. Cancer Research UK, Uterine cancer statistics; The Lancet, Seminar: Endometrial cancer (2022) ↩︎
54. Y Zhou et al. Variation in 'fast-track' referrals for suspected cancer by patient characteristic and cancer diagnosis: evidence from 670 000 patients with cancers of 35 different sites (2018) ↩︎
55. NICE, Diagnostics guidance [DG42] Testing strategies for Lynch syndrome in people with endometrial cancer (2020) ↩︎
56. NHS England, Life-saving NHS test helping to diagnose thousands with cancer-causing syndrome (2023) ↩︎
57. Cancer Research UK, Uterine cancer risk ↩︎
58. Obesity Health Alliance, Health Inequalities Position Statement (2023) ↩︎
59. Obesity Health Alliance, Campaign priorities ↩︎