The views expressed in this publication are those of the author and do not necessarily represent those of the Agenda 2030 Graduate School or Lund University. The present document is being issued without formal editing.
Sorry I didn’t tell you it was a tumour, we’ve been referring to it as a tumour medically, we just hadn’t told you.
In 2019 Polly gave birth. And had a stroke. And epilepsy. Then she didn’t have epilepsy, she was just stressed. Then she had PTSD. Then she had epileptic auras. Then a bit more stress. And finally, back to epilepsy again.
After giving birth, Polly started having epileptic episodes that nearly killed her. For several days, Polly was having episodes on a daily basis and was unable to leave the hospital. We now know that the cause of these attacks is a tumour on her brain. Despite the tumour and epileptic seizures, the consultants that Polly saw postnatally put this down to anxiety. Sadly, this was a sign of things to come. For the next 18 months, Polly suffered from ongoing attacks but was constantly having her diagnosis changed. Despairingly, the medical staff would consistently return to the idea that she was just a first-time mum struggling to cope.
“My dear I have 3 children of my own, I know how challenging it can be as a parent”… right so, my husband is also a first time parent, I don’t see him having seizures!”@postnatal_equality, 2020
Throughout this period, she has had to fight to be taken seriously and for clinicians to consider the tumour growing on her brain a likely cause of her life-shattering condition. After 18 months of fighting, she has finally been diagnosed with epilepsy and been given a treatment plan that matches her experience.
This article aims to tell Polly’s story and draw attention to the gender biases and structural insufficiencies in UK’s National Healthcare Service (NHS). Drawing on an ethnographic account of Polly’s experience substantiated by contemporary medical research, the article validates that Polly is not alone in her experience; and that there are deeply engrained financial, political and cultural drivers behind her maltreatment.
From Disempowered to Empowering Others
“Women need to hear my story; even if I just help one woman to feel that she is worthy and she is empowered by my story to say to a male professional “no, I don’t think this, I think that”.P. Jones, personal communication, September 28, 2020
Polly has now started a campaign to raise awareness for postnatal equality, recreating her story episodically on social media. With the raw, unfiltered reliving of her experience, she aims to bring attention to the structural gender inequalities within the NHS and give a voice to other women who are undoubtedly going through similar experiences and suffering in silence.
“I’ve been trying to find other women to connect with. Any other woman that has a similar story to me postnatally but I just can’t find it. Maybe there aren’t any and my journey is unique – but I don’t think that’s true. I think women are expected to have a baby and just get on with it.”P. Jones, personal communication, September 28, 2020
Polly argues that, after giving birth, society expects women to “just get on with it” and not complain. Besides the severe lack of healthcare support for postnatal traumas, the everyday reality that women face behind closed doors is drastically under-represented, in part because women are expected to “selflessly and happily attend to infant tasks” (Reshef & Israelashvili, 2020). This absence disempowers, encouraging women to think, “maybe I am crazy, maybe I should just be quiet”. Polly’s campaign sets out to fill this void and empower women to not “just get on with it”.
NHS: An inclusive healthcare system?
Polly’s experience exposes three important failings of the UK’s healthcare system that corroborate leading scientific research in the field: a disconnect between patient and doctor; dismissive attitudes towards women and; a lack of resources. Studies consistently show that women across the UK experience poor levels of postnatal care (Beake et al, 2010) and that postnatal services are under-prioritised and under-funded (Thomson & Garrett, 2019). At the intersection of gender inequalities, unexposed biases and funding restraints, postnatal care risks failing female patients at one of the most important moments in their lives. For the NHS to become an inclusive, equitable healthcare system, it needs to take seriously the concerns and experiences of its patients that go under the radar and suffer in silence.
Disconnect: A lack of compassion
“I’m reliving this trauma all the time and I think ‘just read my notes! Treat me as a human, read something about me.’ “P. Jones, personal communication, September 28, 2020
The NHS tends to adopt a “biomedical model” which sees illness, in purely biochemical terms, as a deviation from the norm (Strickland & Patrick, 2014). This reductionist model is wont to disregard the psychosocial dynamics of health and see the body as a detached object akin to a car that a mechanic/doctor can fix. Favouring technical evidence and measurable progress, this approach enables clinicians to distance themselves emotionally from patients (Jeffrey, 2016). In 2014, The Francis Report found abundant evidence of a system-wide lack of compassion for patients and called for a culture change across the NHS to see patients as human beings. High profile reports like this and their attendant calls to re-humanise healthcare are far too common. This systematic failure is a result of myriad factors: overemphasis on a biomedical model, a blame culture, insipid power dynamics, commercialisation of healthcare, etc. (Zulueta, 2013). In short, patients are viewed more like broken cars than people with psychological and social needs. In case like Polly’s, this neglect merely exacerbates trauma and intensifies an already unbearable situation.
Attitudes: First-time mum
“As a first time mum, that was the first question I was asked a lot of the time: ‘is this your first baby?’ “P. Jones, personal communication, September 28, 2020
Women-predominant conditions are more likely to be underdiagnosed than men-predominant ones (Horsfall, 2001); due, in part, to clinician sexism. Older, predominantly male clinicians diagnosing young women comes with obvious power inequalities that can easily lead to inaccurate diagnoses (Eriksen & Kress, 2011). Being a first-time mother is a notoriously difficult and unsettling time, so it’s not surprising that consultants assume that first-time mothers like Polly are suffering from the burden of motherhood and struggling to cope. However, when this attitude clouds a clinician’s judgement, leading him to overlook scar tissue on an MRI scan and diagnosis his patient with stress, this is an alarming indicator that something is wrong.
“My dear we can only measure what is happening in the hardware of your brain, we can’t measure the software… I know how challenging it can be as a parent.”@postnatal_equality, 2020
It is crucial for clinicians to be more reflexive of their own pre-conscious prejudices and how they could be potentially altering the livelihoods of patients. In a case like Polly’s, condescension and blatant sexism can be life-threatening.
Structure: Lack of resources for women’s issues
“You go through so much trauma. I think that if it was men it would be completely different. Men wouldn’t be expected to just get on with that trauma.”P. Jones, personal communication, September 28, 2020
It’s widely acknowledged that women’s care is underfunded. Less than 3% of the NHS budget goes to maternity care, of which only 8.5% – or £237 per woman – goes to postnatal care. In the most complex cases, this will rise to a woeful £805 (RCM, 2014).
Postnatal care providers in the NHS are unable to adapt their services to the needs of women or take a more holistic approach to care because funding is limited or precarious (Thomson & Garrett, 2019). Budget restraints and high case-loads are stretching clinicians to the point they cannot dedicate sufficient time to patients, sometimes reducing consultations to as little as 10 minutes. For patients like Polly, this is clearly not enough time to establish a care plan:
“You’re so conscious that you’ve only got 10 minutes with this person who is deciding the fate of your life so you’re focusing on that and then when you walk out of the room you think ‘ah, I didn’t mention that, I didn’t ask that…’ “P. Jones, personal communication, September 28, 2020
More often than not, healthcare staff and postnatal care units find creative solutions to provide the best quality care they can. But they can only do so much: their efforts are being suffocated by staffing restraints and funding cuts – to the point that 57% of midwives report neglecting tasks and 63% don’t even have time to go to the toilet on a shift (Bourke, 2013). The result of this systemic lack of resources is that women are left alone with their trauma with no choice other than to “just get on with it”.
Time to not just get on with it
“The nurses were unbelievable… [they] treated me as a human, as that person there and then that was suffering… [The problem] is the system. They don’t have enough time. No one has ever had time for me.”P. Jones, personal communication, September 28, 2020
Despite the almost heroic efforts of staff on the hospital floor, women experiencing postnatal trauma are overwhelmingly neglected and under-prioritised. The noxious combination of gendered bias, lack of resources and societal expectations is severely handicapping postnatal care and putting women’s lives at risk. For Polly, this is not acceptable. She hopes her awareness campaign will inspire women to stop “just getting on with it” and demand care that meets their needs.
Follow Polly’s campaign @postnatal_equality and engage with her on-going conversation on Instagram.
- P. Jones, (September 2020). Personal Communication [Personal Interview].
- Jones, P. [@postnatal_equality]. (September 2020). Posts [Instagram profile]. Retrieved from https://www.instagram.com/postnatal_equality/
- Beake, S., Rose, V., Bick, D., Weavers, A., & Wray, J. (2010). A qualitative study of the experiences and expectations of women receiving in-patient postnatal care in one English maternity unit. BMC Pregnancy and Childbirth, 10(1), 1-9.
- Eriksen, K., & Kress, V. E. (2008). Gender and diagnosis: Struggles and suggestions for counselors. Journal of Counseling & Development, 86(2), 152-162.
- Francis, R. (2013). Report of the Mid Staffordshire NHS Foundation Trust public inquiry: executive summary (Vol. 947). The Stationery Office.
- Horsfall, J. (2001). Gender and mental illness: An Australian overview. Issues in mental health nursing, 22(4), 421-438.
- Jeffrey, D. (2016). Empathy, sympathy and compassion in healthcare: Is there a problem? Is there a difference? Does it matter?. Journal of the Royal Society of Medicine, 109(12), 446-452.
- Reshef, P., & Israelashvili, M. (2020). Between Selflessness and Differentiation in Postnatal Adjustment: Exploration of a Combined Model. Journal of Adult Development, 1-12.
- Royal College of Midwives. 2014. Postnatal care funding: The case for better resourced maternity care. Retrieved from: https://www.rcm.org.uk/media/2357/pressure-points-postnatal-care-funding.pdf
- Strickland, C. M., & Patrick, C. J. (2014). Biomedical model. The Encyclopedia of Clinical Psychology, 1-3.
- Thomson, G., & Garrett, C. (2019). Afterbirth support provision for women following a traumatic/distressing birth: Survey of NHS hospital trusts in England. Midwifery, 71, 63-70.
- Zulueta, P. D. (2013). Compassion in 21st century medicine: Is it sustainable?. Clinical Ethics, 8(4), 119-128.