As someone who has eagerly spent many an evening and weekend fashioning together comprehensive grant applications in the pursuit of researching and developing more holistic approaches to women’s health, you may imagine I was intrigued to read the 100-page Women’s Health Strategy. I should add that in all the grants I’ve put in for women’s health research, no matter how good the feedback received from the review panel, how much expertise the team of researchers had, or how much involvement and direction patients and service users had, I’ve not been successful in getting substantial funding. Now maybe it’s because I’m a dud. Or maybe it’s because research funding for women’s health is scarce. A study in the US found that the US National Institutes of Health (NIH) funding body disproportionately allocated its resources towards diseases that predominantly affect men as opposed to women [1]. It is a similar tale in the UK where less than 2.5% of publicly funded research was assigned for reproductive or urogynaecological health despite the fact that roughly 16% of the population experience issues related to this[2].
Bearing all this in mind, I am enthused by the spotlight now being directed toward women’s health. Reading the report[3], I remain enthused. There are some great concepts and directions outlined. Before I highlight the areas I believe have been overlooked, I will summarise some of the key takeaways from the report.
The Women’s Health Strategy in A Nutshell
There are 15 main areas of focus highlighted in the report. These 15 areas can be divided into 3 categories:
· Health-specific areas such as menstrual health, gynaecological conditions, menopause, cancers and fertility-related issues.
· Broader social approaches to improving women’s health in education, the workplace and targeting social disparities.
· Healthcare professional and systemic processes. This includes education and training for healthcare professionals as well as research, the use of data and the development of digital health solutions.
At the end of the report, there is some consideration of how the ambitions and actions will be implemented and monitored. The implementation passage is vague and broad, to say the least, reading much like the business plan of a contestant for The Apprentice. I’m afraid the monitoring progress section isn’t much better, describing a generic implementation framework. That being said, in each chapter, there are more specific outlines of ambitions and action plans. These vary in degree of detail and feasibility but there are some good things in there.
Report Highlights
There were some aspects of the report that got me excited. Just the very fact that it was a whole 100-page document dedicated to women’s health inequality was exciting. We have seen predecessors of this report; The Marmot review[4], finding health gaps widening between sections of our society and that health has generally declined for the poorest 10% of women. More focused yet, was a 2019 King’s Fund scoping review [5] exploring women’s experiences of healthcare for urogynaecological symptoms and in the 2020 Cumberlege report [6]. Both reports clearly identify the dismissal of women by healthcare practitioners as a significant issue amongst other systemic issues culminating in dangerous misdiagnosis and omissions.
More women’s health funding
So as I read this report, a hopeful part of me was thinking “maybe this area is being taken seriously after all”. The present 2022 Women’s Health Strategy pledges funding for both research and clinical and social strategy implementation. As briefly alluded to early, funding is something that has been sorely lacking for a while. A £7.3miilion dedicated fund for policy research in women’s health, based at University College London has been commissioned. Furthermore, the Government are working with the National Institute of Health Research ( the largest research funding body for health and care research in the UK) and the Medical Research Council to prioritise women’s health research. There is a rolling call for researchers to submit applications to address research recommendations identified by NICE guidance, including (but not solely dedicated to) women’s health conditions.
They have already funded a large research trial exploring the experiences of women seeking treatment for urogynaecological conditions and an evaluation of surgical versus non-surgical interventions for the management of chronic pelvic pain in women with endometriosis. Both are incredibly important studies, which will have numerous implications for the further development of women’s healthcare. This really did excite me and I look forward to following the outcomes of both of these studies.
Investment in women’s health hubs
There has already been a trialling of “one-stop shops” for women’s health issues in pilot sites across the UK. These have been aimed to reduce the burden on women to navigate different (and potentially related and interacting) health issues and professionals, to provide it all in one space. This is a great opportunity for increased integration, which can also help improve treatment decisions and outcomes as professionals are able to capture a full picture and tailor treatment appropriately. It’s also an opportunity to potentially ensure that all professionals involved have specialised training in the areas of women’s health. The report points to one specific example of a hub in Liverpool that has provided a range of services including psychosexual services. This is particularly heartening. Many of the women I have worked with who have recurrent or chronic urinary tract infections, interstitial cystitis, vaginismus, vulvodynia, etc, have experienced a negative impact on their sexual function and relationships. I believe working with these things is central to improving not only quality of life, but also overall health outcomes. Sex and intimacy, after all, play an important role in our mental and therefore physical wellbeing.
Mention of multidisciplinary teams and span across sectors
As I was categorising the chapters of this report into themes, I noted that in essence, the report is rather biopsychosocial in nature. It considers the role of various social contexts beyond the healthcare system, including work and education, which is fantastic. Our health, after all, is not siloed. And a common problem people face is having to learn about health and the body for the first time only once they are experiencing difficulties when their capacity for learning and navigating things is already depleted. Things can then feel much scarier and out of control, which is something that can influence people's ability to manage health. The report talks about introducing more education and focusing on women’s health including menstruation and menopause within the schooling system and endeavouring to continue education to the public and healthcare professionals across the lifespan.
The report also acknowledges the importance of the integration of different roles within the effective provision of healthcare for women. It highlights the role of doctors, nurses and more broadly, multidisciplinary teams in addition to the role of educators, stakeholders, community members and patient voices. To ensure truly patient-centred care, it is fundamental that different stakeholders are engaged and that expertise from different domains is considered. This is particularly so as the report acknowledges the role that stigma and taboo plays in the experience of women’s health issues.
Identification of specific conditions like endometriosis and recurrent urinary tract infections
We’ve seen for so long that women with endometriosis await diagnosis for far too long ( 7.5 years according to Endometriosis UK). And yet, for so long there seems to have been little done to change this. Naming endometriosis explicitly will hopefully result in further awareness, prioritisation of research funding and consideration in clinical practice. This is also my hope for other conditions mentioned specifically in the report including recurrent urinary tract infections, urinary incontinence and vaginal prolapse.
When it comes to “recurrent” urinary tract infections, there is some controversy as some patient groups argue for differentiation between “recurrent” and “chronic” urinary tract infections. The reason for this is that the clinical diagnostic criteria for the former can be used to describe women who have a UTI come back a few times in six months but ultimately pass, without issue whereas chronic UTI can distinguish cases where women barely (or never) experience full symptom let up.
Glaring Gaps From A Health Psychology Lens
Although you are currently reading a synopsis on the women’s health strategy, written by a health psychologist, I will make an explicit disclaimer. I am a health psychologist, so I was applying a very specific lens to this report based on my academic, research, clinical and personal experience in this area. As I set out the following points, I acknowledge that there will be other gaps that I am not considering. I also acknowledge that health psychology is not the magic answer to everything! Hopefully, I do, however, make a compelling case, that health psychology is fundamental to reaching some of the ambitions that the report sets out.
Ignoring the importance of terminology and how it relates to “invisible illnesses”
The report highlights what it means by gynaecological and urogynaecological conditions and gives some examples as mentioned above. The issue that is not addressed is how symptomatology of varying conditions is often “invisible” and relies on reporting of internal experiences by women. There is such a huge potential overlap between a whole array of gynaecological, urogynaecological, menopausal and other long-term condition symptoms, that it can be hard for both patients and professionals to get a whole picture [7]. Patients and practitioners alike, rely on diagnostic labels to get clarity and a sense of certainty. Yet when the symptomatology overlaps or is ambiguous, it can cause a lot of distress and fear. It can also be associated with the increased characterisation of an experience as “psychosomatic” (see previous blog post for my difficult relationship with this word) amongst medical practitioners.
Within urogynaecology, there are ongoing debates about the most helpful terminology for an array of conditions including recurrent urinary tract infections and whether this should be distinguished from chronic urinary tract infections or “embedded infections”. Similarly, there are huge consultation papers from working groups of experts as to the best way to approach diagnostic categories for interstitial cystitis (or “bladder pain syndrome”), overactive bladder and a range of other conditions with overlapping symptomatology [8]. I acknowledge that it was beyond the scope of Women’s Health Strategy to address any of this in-depth, however, it seems an important component to acknowledge in the section labelled “menstrual health and gynaecological conditions”. A clear ambition that could have appropriately been set, would be to have cohesion on diagnostic labels and multidisciplinary-informed protocols for overlapping symptomatology.
Invisible illnesses, stigma & dismissal: what’s the strategy?
The experience of dismissal is a huge theme coming up in all of the explorations into deficiencies in women’s healthcare in the UK (and beyond), to date. The main way this seems to be addressed in this report is through education and a seemingly “cover-all” role of the women’s health ambassador. While the report commendably sets out an agenda for increasing the education of healthcare professionals and the public about women’s health, it doesn’t directly target a culture of medical misogyny. Medical misogyny goes much deeper than an absence of knowledge about a specific urogynaecological condition and the flagship symptoms. It is an unconscious bias deeply held by many in the medical profession (regardless of gender) that sees women as hysterical and weak and men as brave and stoic. These perceptions cannot simply be undone by a greater knowledge of anatomical physiology and disease processes. In fact, many who hold these attitudes, when explicitly questioned would deny holding such attitudes. Not because they are lying, but because they don’t know.
I have worked with many medical professionals. Consultants, junior doctors, nurses, physios alike. It has never ceased to amaze me how someone I considered to be biopsychosocially cognisant and patient-centred, can demonstrate brash and unhelpful patient categorisations that are way off base and seemingly prompted by what I would consider proportionate distress to very debilitating symptoms. I’ve had patients who have been in agonising pain from ruptured cysts and internal stitches be described as having a personality disorder or Munchausen’s because they were vocalising their agony. So you can see that providing professionals with more biomedical training on specific conditions will go no way to answer such stigmas and lack of patient understanding.
Having had a role in training healthcare professionals in how to handle consultations where patients may benefit from psychological support, but NOT because their physical symptoms are “psychosomatic”, I have witnessed the real difficulty in establishing the right lexicon and interpersonal navigation of such consultations. So many times, I have heard words to the effect of “that doctor really helped me because they finally heard what I was saying and got where I was coming from”. This consultation experience is worth its weight in unnecessary prescriptions (the common alternative to patient-centred and validating care). To summarise, without explicit strategies focussing on unconscious bias training and efforts to improve patient-centred care, my fear is that women will continue to have heart-breaking and unproductive experiences when presenting to healthcare.
Trauma-informed but no mention of psychology
The word “trauma” appears in the report 18 times. And yet the word “psychology” appears 0 times. The word “psychological” appears 3 times and is confined to the area of the report describing perinatal mental health. This demonstrates how systemically biomedical our healthcare model remains. In a report seeking to fundamentally address experiences of dismissal and inequality in the context of healthcare, psychology is neglected. I surely don’t have to convince anyone that trauma is deeply psychological. And yet…
When you consider the three categories that this report can be divided up into- health, social and systemic – you perhaps assume that the psychology integrating these spheres is implicit. In actual fact, it is absent. This is a big issue. When Engel described the biopsychosocial model of health[9], no doubt it felt intuitive and for many, like a piece of a missing puzzle was finally sliding into place. How is it then, that we continue to ignore the role of psychology in health?
How psychology impacts health and physiology
The experience of ill health is a fundamentally psychological one. Not only are people’s emotions affected, but we can also often see big comorbidity with mood disorders like anxiety and depression[10]. The questions people have when seeking healthcare “is this fixable?”, “how will I cope?”, “will this affect my day-to-day life?” are all big questions. These fundamentally affect perceptions of health and the self. Research shows that perceptions of both can impact illness trajectories, symptom severity, presentation to healthcare versus avoidance of healthcare, treatment adherence and so on[11][12][13]. To truly improve health and work towards a more preventative rather than reactive tertiary healthcare approach, there needs to be thorough integration of psychology.
Although the report talks of trauma, its generic answer to this issue within the healthcare context is for practitioners to be “trauma-informed”, without giving a definition of what that means. Being trauma-informed is important, but ultimately part of the aim of this approach is to identify when individuals need to receive further support or intervention due to trauma. Without adequate mention of the integration of psychology within the healthcare system, it is not clear how healthcare practitioners would ensure that patients receive trauma interventions such as EMDR or trauma-focussed CBT.
To conclude
While the report is no doubt a promising step in the right direction, tackling some serious systemic issues, there are some fundamental omissions. These omissions will make the many ambitions set out in the report hard to realise, as there are some key ingredients missing. One of them being psychology. The other potentially is funding. These are big ambitions aiming to fundamentally change a culture, systemic processes and societal taboos about women’s health. In reading the report, it is unclear what budget has been set aside for the healthcare and educational ambitions. In fact, the report often mentions money that has already been spent. Although it may be premature to do a full-scale analysis on whether anything has changed, my inkling is that if the money has already been spent, it hasn’t garnered a whole amount of change. We, therefore, need quite a bit more to foot the bill.
The report is lengthy and there are lots of aspects that could be further explored including a more in-depth analysis of how psychology is considered in the context of healthcare, the lack of mention of burnout of NHS staff which will most definitely have an impact on the feasibility of this plan and the role of the women’s health ambassador, but I’ll leave that for a part II.
References
[1] Mirin, A. A. (2021). Gender disparity in the funding of diseases by the US National Institutes of Health. Journal of Women's Health, 30(7), 956-963.
[2] https://theconversation.com/gender-bias-in-medicine-and-medical-research-is-still-putting-womens-health-at-risk-156495#:~:text=But%20the%20lack%20of%20funding,reproductive%20or%20gynaecological%20health%20issue.
[3] https://www.gov.uk/government/publications/womens-health-strategy-for-england/womens-health-strategy-for-england#implementation-and-monitoring-progress
[4] https://www.health.org.uk/publications/reports/the-marmot-review-10-years-on?gclid=Cj0KCQjwuuKXBhCRARIsAC-gM0gQK0ysZn9xr7o2guA5DrGgpJEnye90eGhWGGQ5HtL5zGNlpPuydtAaAvXzEALw_wcB
[5] Ross, S. & Baird, B. Women’s experience of gynaecological and urogynaecological services in primary and secondary care. https://www.york.ac.uk/media/healthsciences/documents/research/Womens-experience-final.pdf (2019).
[6] Cumberlege, J. First do no harm: the report of the Independent Medicines and Medical Devices Safety Review. https://www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf (2020)
[7] Sant, G. R., & Hanno, P. M. (2001). Interstitial cystitis: current issues and controversies in diagnosis. Urology, 57(6), 82-88.
[8] Doggweiler, R., Whitmore, K. E., Meijlink, J. M., Drake, M. J., Frawley, H., Nordling, J., ... & Tomoe, H. (2017). A standard for terminology in chronic pelvic pain syndromes: a report from the chronic pelvic pain working group of the international continence society. Neurourology and urodynamics, 36(4), 984-1008.
[9] Engel, G. L. (1981, January). The clinical application of the biopsychosocial model. In The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine (Vol. 6, No. 2, pp. 101-124). Oxford University Press.
[10] Trick, L., Watkins, E., Windeatt, S., & Dickens, C. (2016). The association of perseverative negative thinking with depression, anxiety and emotional distress in people with long term conditions: A systematic review. Journal of psychosomatic research, 91, 89-101.
[11] Dempster, M., Howell, D., & McCorry, N. K. (2015). Illness perceptions and coping in physical health conditions: A meta-analysis. Journal of psychosomatic research, 79(6), 506-513.
[12] Baines, T., & Wittkowski, A. (2013). A systematic review of the literature exploring illness perceptions in mental health utilising the self-regulation model. Journal of clinical psychology in medical settings, 20(3), 263-274
[13] Rijken, M., Valderas, J. M., Heins, M., Schellevis, F., & Korevaar, J. (2020). Identifying high-need patients with multimorbidity from their illness perceptions and personal resources to manage their health and care: a longitudinal study. BMC family practice, 21(1), 1-14.
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