Roxanne Stevenson-Brown
Cervical screening is essential to the health of the female reproductive system. The UK’s screening programme is a necessary public health intervention, as of the 3,197 annual diagnoses of cervical cancer, the survival rate is 51%, despite the fact that in 99.8% of cases, this cancer is preventable (Cancer Research UK 2019). Cervical screening involves testing the
health of the cervix by collecting a small sample of cells – a smear test, and then testing these samples for high risk types of the human papillomavirus (HPV) (NHS 2023). Cervical screening is offered to eligible individuals every 3-5 years dependent on location and age (Cancer Research UK 2023). In January 2023, NHS England reported that 4.6 million eligible individuals
did not book in for their cervical screening, making up a third of the eligible population (NHS England 2023). There has been some research into reasons for avoidance, however, sufferers of vaginismus have largely been missed from research and the resulting engagement.
The NHS defines vaginismus as a condition where ‘the vagina suddenly tightens up when you try to insert something into it’, and states that ‘it can be painful and upsetting, but it can be treated’ (NHS 2021). In contrast, the UK’s Vaginismus Network defines the condition as a ‘psychosexual condition involving the brain subconsciously protecting the vagina from penetration by causing the Kegel muscles to spasm or close’, which ‘can cause penetration to be impossible or painful and lead to a phobia of gynaecological examinations’ (Vaginismus Network 2023). The language used in the two definitions clearly differs, and the NHS’ lack of understanding of the condition, is perhaps a contributor to the research and service provision gap for these patients when it comes to cervical screening.
The Vaginismus Network estimates that a minimum of 2 in 1,000 people suffer from the condition (Vaginismus Network 2024). Based on these numbers, therefore, it is possible that 9,200 of the 4.6 million individuals that did not book into their cervical screening appointment, are individuals with vaginismus. Further still, there is evidence from other academic studies that vaginismus prevalence is as high as 5-17% of the eligible population (Lahaie et al. 2010:705). Taking these numbers into account, it is possible that between 230,000-782,000 individuals that did not book in for cervical screening are vaginismus sufferers. This paper acknowledges the huge disparity between 9,200 and 782,000 and will address this in the potential interventions later in the paper.
State of Play
Professor Peter Johnson, the UK’s National Clinical Director for Cancer, stated that ‘there are lots of reasons why somebody might not want to come forward’ for cervical screening, highlighting that individuals may feel embarrassed, that it may be inconvenient, or that they may be uncertain about the importance or practicalities of the test (NHS England 2023).
Although Professor Johnson’s statement is well-meaning, it fails to capture the reality of the cervical screening experience for many individuals, as screening is often considered ‘a big deal’ that has the potential to result in both physical and emotional negative experiences (Chorley
et al. 2016:166), especially for those that suffer from vaginismus.
As stated by the Vaginismus Network, the dominant narrative relating to the condition surrounds penetrative sex (Vaginismus Network 2022). A review of the condition on the NHS website confirms this, although the website does also include some narrative relating to tampon insertion (NHS 2021). However, the absence of penetrative sex or tampon usage from an individual’s life does not have the potential to negatively impact their physical reproductive health in the same way as the absence of cervical screening. Despite this important fact, at present, the NHS provides no resources or support for those with
vaginismus when undertaking a smear test.
Health Equity
The NHS has made efforts to make the national screening programme more accessible and equitable, with specific advice for those from minority ethnic backgrounds, with disabilities, and those that have transitioned from female to male and now identify as trans men (GOV UK 2023). Personalisation of the screening programme for minority ethnic backgrounds, includes cultural training for testers and access to information in a range of languages (GOV
UK 2023). The government website references a study from the British Medical Journal that discusses negative experiences among ethnic minority women in cervical screening. This study interviewed 54 individuals from a range of backgrounds, and found interventions such as raising awareness in communities through training and investment could prove useful in
addressing this gap (Marlow et al. 2015:248). In the case of those with disabilities, the NHS provides access to accessible information and a range of reasonable adjustments including the possibility of a domiciliary visit (GOV UK 2023). A number of these interventions could be adapted to effectively engage the community of vaginismic patients in the screening programme and raise awareness on the importance of testing.
At present, vaginismus is listed as a potential individual circumstance that would lead to withdrawal from the cervical screening programme. The government website states that it ‘may be helpful’ to offer this cohort of patients an ‘appointment to discuss the screening process’ (GOV UK 2019). However, based on the information provided, it does not seem that
this is mandated, nor that the community have been asked about what would be a suitable or effective intervention to address potentially high withdrawal rates. Based on the current provision of reasonable adjustments for other cohorts of patients, as well as guidance from the Vaginismus Network, this paper recommends the exploration of the following interventions.
Interventions
- Study
A study to understand the full extent to which vaginismus is causing cervical screening avoidance is long overdue. In other areas of the NHS, services are mandated to implement improvement projects aimed at increasing attendance rates when the ‘Did Not Attend’ rate is above the national average of 9% (NHS Benchmarking Network 2019). The cervical
screening programme has a 33% rate of non-engagement and therefore is clearly in need of the support that an improvement project can bring.
However, even prior to the commissioning of this study, further insight is needed to understand the prevalence of the condition in the UK. As stated earlier in the paper, the extent to which the condition affects the population is unknown, with the Vaginismus Network stating a 0.2% prevalence (Vaginismus Network 2024), and other academic studies
stating between 5-17% (Lahaie et al. 2010:705).
Although completing an epidemiological study would be extremely difficult, it is possible for the NHS to engage with the Vaginismus Network as a starting point. The endorsement of the Network by the NHS may also support with the reduction of stigma surrounding the condition,
which in turn has the potential to see more people come forward that require support. - NHS guidance for patients
This paper recommends that, ahead of cervical screening, the NHS provides condition-specific guidance to those with vaginismus. At present, there is no NHS guidance available for vaginismic patients attending their smear test. The government website simply states that it could be ‘helpful’ to offer these patients an ‘appointment to discuss the screening process’
(GOV UK 2019). Although this is well-meaning, many patients will not have been identified as having the condition and therefore may not know to ask for this offer.
The Vaginismus Network has produced a guide that aims to relieve the ‘trauma’ felt by this group when attending smear tests (Vaginismus Network 2023). This would be an excellent starting point for public health professionals to review and discuss. - Tester training
This paper recommends that those conducting cervical screening tests on vaginismic patients complete patient-specific training. An academic study conducted in 2016 found that test attendees’ experiences of screening are greatly influenced by the health professional
conducting the test. Negative experiences have been the result of poor communication, lack of information, and reduction or denial of the ‘emotional significance of the procedure’ (Chorley et al. 2016:167). These stories have also been picked up by the UK media, as vaginismic patients have reported a lack of sympathy from the tester, evident through comments, such as that the test is ‘uncomfortable for everyone’ (Glover 2021). Qualitative evidence such as this demonstrates the inequitability of the cervical screening programme, and the potential for improvement through training. In order to address this skills gap, this paper recommends that testers be mandated to complete appropriate communication and practical skills training, as this has the potential to improve the patient experience. - Service design
There are a number of service-level interventions that have the potential to result in a more positive patient experience in cervical screening. The literature has found that the majority of attendees prefer a female smear taker, as well as continuity of care (Chorley et al. 2016:167).
This paper recommends further exploration of these features and how they can be integrated into the current patient offering.
Furthermore, the NHS could also consider the development of a vaginismus-specific clinic for those that are suffering with the condition. This would include access to the above examples of improvement as well as a staff cohort that is specifically trained in dealing with patients
with this condition. There is precedent to create a clinic of this kind, as there are multiple variations of any given clinic in the majority of NHS healthcare settings. - Self-testing
This paper recommends exploring alternative means of testing, as the use of the speculum is a significant barrier to testing attendance. A recent study found a 17% increase in uptake when patients were offered non-speculum sampling approaches (Landy et al. 2022:26). At present, vaginismic patients can ask for a smaller speculum should they prefer (London Gynaecology 2021), however, this does not address the primary issue of speculum use that prevents many of these patients’ booking their smear test.
In 2021, 31,000 patients engaged in an NHS trial of self-testing smear tests that could be done at home (NHS England 2021). As a result of this study, it was found that 51.4% of patients preferred self-testing, due to the privacy and flexibility associated with being at home (Waller 2022). However, 36.5% of patients reported still preferring to complete the test in a clinical setting with support, due to fears over collecting samples incorrectly (Waller 2022). Looking internationally, Australia offers patients the option to self-test in a clinical setting, as they have found that guidance from a healthcare professional led to higher uptake of testing (Davey 2022). When it comes to the vaginismic patient community, guidance may be beneficial, as the smear test has the potential to be the first interaction with a health professional about their condition. However, these alternative means of testing need to be further explored to determine their viability and their impact on engagement with vaginismic patients. - Conclusion
Cervical cancer is a preventable cancer that only has a survival rate of 51% (Cancer Research UK 2019), and therefore the resolution of the low take up of cervical screening is key for the improvement of female reproductive health. In order to address this and explore the interventions discussed, this paper recommends the set-up of a Vaginismus Working Group,
which would include stakeholders from NHS organisations, as well as patients and representatives from the Vaginismus Network. The unification of these stakeholders will be key in addressing the resource scarcity of the NHS landscape and prioritising the most effective interventions that will reduce stigma, improve patient experience, and ultimately increase testing uptake. Overall, improvement in the offerings to these patients is essential if the NHS wishes to realise its ambition of becoming a preventative healthcare system that effectively provides for female reproductive health.
References
Cancer Research UK (2019) ‘Cervical cancer statistics’ Available at: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-bycancer-type/cervicalcancer#:~:text=There%20are%20around%203%2C200%20new,day%20(2016%2D2018) (Accessed 3rd January 2024).
Cancer Research UK (2023) ‘About cervical screening’ Available at: https://www.cancerresearchuk.org/about-cancer/cervical-cancer/gettingdiagnosed/screening/about#:~:text=This%20has%20changed%20from%203,from%203%20t o%205%20years (Accessed 27th December 2023).
Davey, M. (2022) ‘New self-test makes it easier than ever to screen for cervical cancer. So how does it work?’ Available at: https://www.theguardian.com/australianews/2022/jul/01/new-self-test-makes-it-easier-than-ever-to-screen-for-cervical-cancer-sohow-does-it-work (Accessed 15th December 2023).
Glover, E. (2021) ‘‘Absolute agony’: Why getting a smear test with vaginismus isn’t as simple as ‘just relaxing’’ Available at: https://metro.co.uk/2021/11/26/the-pain-of-getting-asmear-test-when-you-have-vaginismus-15665353/ (Accessed 21st December 2023).
GOV UK (2019) ‘Ceasing and deferring women from the NHS Cervical Screening Programme’ Available at: https://www.gov.uk/government/publications/cervical-screening-removingwomen-from-routine-invitations/ceasing-and-deferring-women-from-the-nhs-cervicalscreeningprogramme#:~:text=Vaginismus,environment%2C%20procedure%20and%20instruments%2 0used (Accessed 2nd January 2024).
GOV UK (2023) ‘Topic 4: equality of access to cervical screening’ Available at: https://www.gov.uk/government/publications/cervical-screening-cervical-sample-takertraining/4-equality-of-access-to-cervical-screening (Accessed 18th January 2023
Lahaie, M. A., Boyer, S. C., Amsel, R. Khalife, S. and Binik, Y. M. (2010) ‘Vaginismus: a review of the literature on the classification/diagnosis, etiology and treatment’, Women’s Health, 6:5, pp. 705-719.
Landy, R., Hollingworth, T., Waller, J., Marlow, L. A. V., Rigney, J., Round, T., Sasieni, P. D. and Lim, A. W. W. (2022) ‘Non-speculum sampling approaches for cervical screening in older women: randomised controlled trial’ British Journal of General Practice, 72:714, pp. 26-33.
London Gynaecology (2021) ‘Tips to make your smear test more comfortable’ Available at: https://www.london-gynaecology.com/smear-test-tips/ (Accessed 30th December 2023).
Marlow, L. A. V., Waller, J. and Wardle, J. (2015) ‘Barriers to cervical cancer screening among ethnic minority women: a qualitative study’, The Journal of Family Planning and Reproductive Health Care, 41:4, pp. 248-254.
NHS (2021) ‘Vaginismus’ Available at: https://www.nhs.uk/conditions/vaginismus/#:~:text=What%20is%20vaginismus%3F,have% 20no%20control%20over%20it (Accessed 20th December 2023).
NHS (2023) ‘What is cervical screening?’ Available at: https://www.nhs.uk/conditions/cervical-screening/what-is-cervical-screening/ (Accessed 21st December 2023).
NHS Benchmarking Network (2019) ‘2019 Outpatients project – Results published’ Available at: https://www.nhsbenchmarking.nhs.uk/news/2019-outpatients-project-resultspublished#:~:text=Key%20findings%20from%20the%202019%20project%20include%3A&te xt=The%20average%20DNA%20rate%20was,8.4%25%20in%202017%2F18. (Accessed 3rd January 2024).
NHS England (2021) ‘NHS gives women Human Papillomavirus Virus (HPV) home testing kits to cut cancer deaths’ Available at: https://www.england.nhs.uk/2021/02/nhs-gives-womenhpv-home-testing-kits-to-cut-cancer-deaths/ (Accessed 5th January 2024).
NHS England (2023) ‘NHS urges women to book a cervical screening as a third don’t take up vital offer’ Available at: https://www.england.nhs.uk/2023/01/nhs-urges-women-to-book-acervical-screening-as-a-third-dont-take-up-vital-offer/ (Accessed 1st January 2024).
Vaginismus Network (2022) ‘Smear Tests’ Available at: https://www.thevaginismusnetwork.com/smear-tests (Accessed 18th December 2023).
Vaginismus Network (2023) ‘The Vaginismus Network’s Guide to Smear Tests’ Available at: https://static1.squarespace.com/static/59c5638df9a61e78fd5e0713/t/5c5d9532085229cff8 237d7c/1549636914700/VN+Smear+Test+Guide+.pdf (Accessed 4th January 2024).
Vaginismus Network (2024) ‘What is Vaginismus?’ Available at: https://www.thevaginismusnetwork.com/what-is-vaginismus (Accessed 30th December 2023).
Waller, J. (2022) ‘Research suggests over half of eligible women would prefer self-sampling for cervical screening’ Available at: https://www.kcl.ac.uk/news/research-suggests-overhalf-of-eligible-women-would-prefer-self-sampling-for-cervical-screening (Accessed 3rd January 2024).
The Heather Trickey Essay Prize 